1 Pound 11 Ounces

A New Journey as well as a New Curriculum

noreply@blogger.com (Sweet B's Mom) — Wed, 16 Sep 2015 15:26:00 +0000

It's been almost a year since I have written, but the time has come for me to begin blogging again and sharing about our new life.

I certainly have so much to tell you, but meantime, I will tell you what I can that won't take a million pages to post about. But those posts are coming soon, so not to worry...

In about a week or so, you will see this blog get a makeover, for Sweet B is no longer the baby who is pictured on the banner, OR you will see me start a completely new blog. The new blog design and topics will reflect our new lives. I had wanted to wait to do this particular blog post until I had written about the turns that our lives have taken in the last year, but those posts are going to take a while, and as the saying goes, "The show must go on!"

And what is this show you ask?....

Because of reasons which I won't explain in this post, Sweet B is in need a transitional kindergarten curriculum that not only teaches the academics necessary to flourish in kindergarten, but also teaches the whole child. She was set to go into kindergarten this year due to her age. Being born so early meant that it put her into kinder now instead of next year, unfortunately. After SO MUCH PRAYER and talking to people and listening to God, and other circumstances which I haven't shared yet (don't you just love it when people allude to things but then don't explain them?) she gets to have an extra year of transitional kindergarten, which is really just another name for preschool or Pre-K. I am doing a hybrid homeschool program through a public charter school. While they do provide the curriculum, I was drawn to Mother Goose Time curriculum because it teaches so much more than just academics. I was given the amazing God-given opportunity to blog for them and receive the curriculum in return.

I have an educational specialist whom I meet with every six weeks to provide proof that I'm indeed homeschooling. According to her, this year is "gift" for Sweet B, and I might as well use the curriculum that does indeed feel like a gift!

I signed on with Mother Goose Time as a blog ambassador, and therefore will be sharing my experiences with this curriculum through this blog. I am SO EXCITED about this opportunity! The beginning of our new lives coupled with this curriculum has got me confident and looking forward to this year in ways that I haven't ever looked forward to something before.

This year Sweet B needs relaxation and time to teach herself the skills that will be necessary for living. (See how allusive I'm being...Isn't it driving you crazy??) She also needs to play a lot and learn at her own pace. She needs more than worksheet after worksheet. She needs extra practice with her fine motor skills, especially since that is her greatest struggle. And wait until you see the fine motor activities in this curriculum. I'm talking lots of gluing, cutting, coloring, beading, etc. She also needs gross motor activities being that her left side is weak due to her mild cerebral palsy diagnosis. I can't wait to tell you about Dance N Beats, a DVD, an add-on to the regular curriculum which teaches her 21 dance moves and features several cute songs (that she plays over and over and over and over). She most definitely needs bible study, which is also included as an add-on and doubles as teaching reading comprehension as well as fine motor skills through the crafts.

She loves this program. We've been doing it for a week and a half so far, and she is so in love with it that when we aren't doing the curriculum, she's either playing one of the many games that were included with the program, pretending that she is being the teacher, practicing her letters, or playing the Circle Time CD. Over and over and over. And then over again. She literally cannot get enough.

I will be showing you specific activities and lessons, but I wanted to do an overview at first so that you can see just how perfect this matches Sweet B's needs, as well as Strong B (her 3 year-old little brother)

Stay tuned as I take you on an adventure through our new normal and show you glimpses of what and how I am teaching her and her little brother! I also hope to write about my other interests and another area of importance in Sweet B's life. If I switch blogs, I will be letting you know so that you can join me there!

Sadness

noreply@blogger.com (Sweet B's Mom) — Fri, 14 Nov 2014 04:34:00 +0000

Tonight a sadness engulfs me as I cry in my bedroom. Today's meeting did not go as I wanted, and in fact, I've got a lot of things to work out in my head, dealing from anger to sadness, to just being more overwhelmed than I have ever been in my life.

I went in today to the meeting with the full expectation that they would see that she can eat small bites, and would immediately book her into the hospital to begin the tube-weaning program. Well, first of all, insurance only covers four days of these programs, and second of all, she is nowhere near being ready to be admitted to an intensive tube-weaning program.

In front of the one sided mirror today, she ate a few bites of macaroni and cheese, half of her smoothie, and a few bites of an apple. We were thrilled. Surely they would notice just how awesome she was eating and see that she is ready.

We were wrong. Soooo wrong. I was wrong in how I thought they would want to wean her. I was wrong in everything.

This is what we learned: No matter how much you starve a child, if they don't have the skills to eat, they won't eat. We knew this before we got her g-tube, we knew this when people would say, "Just get her really hungry! She'll eat! A kid won't let themselves starve!" I knew how wrong they were, and somehow I thought that she had the skills now. As they began telling me that her little bites of only four foods that she will eat is not skillful enough to eat when they starve her, I began seeing that they were right. She pockets her food. Every bite takes such energy. It scares her.

So they gave us OUR NEW PLAN. I hate it. I hate everything about it. I hate that it is going to run our lives. It brings me back to days before Sweet B was on a feeding tube, and we spent hours and hours trying to feed her by bottle, and when she went on the feeding tube, we continued to try to get her to eat orally at every meal. And did therapies. And doctor visits. And basically I lived my life holed up in our little rental home, devoting my soul to getting her to eat, and roll over, and keep her from getting sick, etc...I gained weight. I had no activities that I enjoyed. I didn't leave the house. I had no friends.

These days I have taken up my health as a big hobby. I cook healthy meals and I exercise and it keeps me sane and happy. I go to Weight Watchers meetings and I'm seven pounds from my goal weight. I have friends. I go to church. I am a part of two moms groups. I take my son to tumbling and Sweet B goes to dance. Sure, she still goes to the doctor often and I still tube-feed her three times a day and offer her food several times a day and feed her overnight through her pump. But it's doable. With OUR NEW PLAN, I'm afraid that I will lose myself, that I will lose the relationship with my toddler boy, and that that I will see my husband even less.

OUR NEW PLAN (summarized...really, it is four typed pages)

-They want her off of her overnight feed as it is not natural to eat while you are sleeping and supposedly keeps you from getting hungry throughout the day. So we must slowly add ounces from her overnight feed to her day feeds. The problem with this is that she gets 30 ounces of formula. I do not know if we can put 30 ounces in her tummy over 12 hours without her going into a retching fit and killing off any desire to eat orally. Other feeding teams believe in keeping the overnight feeds to supplement, but not ours. I don't know what I believe. I suppose it's different for every child.
-I will be doing FIVE separate g-tube feedings throughout the day, as well as FIVE FULL MEALS consisting of one preferred food and one new food. Then the 6th g-tube feeding is to be her overnight pump until we get her off of that. *I also have a toddler son. He will of course be in on the five meals, but the g-tube feeding and all of the venting that that requires for each one, will require him to be able to entertain himself, which is impossibly difficult.
-They want me to subtract some of the calories she eats orally from her tube-feeds, but not all, since they want her to grow even more and get a bit chunky.
-I will be taking her to her doctor for WEEKLY weigh-ins. What will I do with my son during this time? I don't know.
-I am to only let her eat the same food once a day, the rest has to be slightly different. A different brand of mac and cheese, a different flavor of yogurt, etc. The goal is to get her to eat a wider variety of foods so that when she is ready to go into the intensive feeding program, she will have a list of foods to eat. They said a large part of wanting to eat is knowing variety and getting excited about different foods.

I understand what they are trying to do. I understand why they no longer want me to talk to her about coming off of her tube. I understand why this must go slowly. I understand. But it still makes me cry.

I wonder when I'll see my friends, when we'll have play dates, if I'll be able to attend the functions at church that I so desperately need. What about my Weight Watcher meetings?

I know that the answer is that I have to. I have no choice. I am praying that God will make this bearable for me. That He will give me help. I pray that I will keep up my commitment to myself to lose my last seven pounds and continue my exercise programs. That's why I'm having my foot surgery tomorrow...as a commitment to myself.

I've had times where I've handled all that Sweet B needs with grace, and I've had times where I've gone off the deep end, losing myself in the process.

My desire is that in a few days when I blog again, I can see the good in this and I will see that I can still lead a full life, whatever that might be for now. I pray that I can see that I have the strength to do this, and that I can be a loving and attentive mom to both of my children. My heart breaks for my boy. I want him to feel special and that his attention needs are being met. I'm just so overwhelmed and sad.

A Day I've Been Dreading For Three Months

noreply@blogger.com (Sweet B's Mom) — Thu, 13 Nov 2014 03:26:00 +0000

I've been dreading Thursday for three months now. Tomorrow we are going to the hospital to get Sweet B evaluated by the Feeding Team. It will consist of doctors, therapists, and different specialists. They will watch us from a one sided mirror, and I will feed Sweet B two foods that she enjoys, and two foods that she refuses to eat. Choosing both will not be difficult. There are only a few foods that she will eat and nearly all foods fall into the "will not eat" category.

I'm not nervous about getting any new diagnoses. A month ago she was diagnosed with migraine disorder that goes along with her cyclical vomiting syndrome. I'm sure that more will come up over the years (don't we all get new diagnoses over the years??), but that's not on my mind tomorrow. My fear is that they will tell me to continue doing as I am doing. While that might sound good to most, to me, I know that what I am doing is NOT working in the slightest bit. This child has had years of feeding therapy. She knows how to chew and swallow food. Sure, she still pockets it in her mouth and she lifts her tongue upwards and likes to deposit the food under her tongue, but she can get that food down her throat.

I've heard that this particular feeding team feels that a slow approach works best...They do not often recommend the intensive tube weaning program that I strongly desire for my girl.

I'm afraid that Medi-Cal will not approve of an intensive tube weaning program.

See, in order to understand why Sweet B won't eat, I need to give you some details as to how her body and brain work (which is really the same as everyone's). In order to desire food, you have to feel hunger. We are tube-feeding her boluses (a bolus is formula given all at one time, usually over 5 minutes, instead of through a feeding pump which is continuous, which she does at night) of 5 ounces three times a day, and she is on a constant feeding pump throughout the night, which is hooked up to an IV pole by her bed. Given this schedule, she does not get hungry. So imagine someone trying to get you to eat when you don't feel hunger...you're not going to do it and it'll probably make you want to puke.

So you're probably going to ask me, "Why don't you get her hungry then?" The answer is that we try. For about a month, we were given permission to skip her dinner bolus. She got very hungry, and for a week I took her out to ice cream for dinner every night. She ate it. I didn't care that it was ice cream. Then we did a week of yogurt. Some nights it worked really well. Others it didn't. I took her back to her GI doc for a weight check and she had not gained weight. Doctors are primarily concerned with weight and whether or not she is getting enough nutrients to live and thrive, and therefore, I was not allowed to skip her dinner bolus any longer.

I continued to try to get her to eat and her oral eating almost completely stopped. I called the doctor and begged her to let me go back to skipping her bolus. She said it was okay as long as I brought her in for weight checks. But the thing is is that she wouldn't go back to eating...Sweet B had learned something in her smartness...that I would never let her go hungry. If she didn't eat her yogurt for dinner, I wouldn't bolus her, but in four hours she knew she would be hooked up to that feeding pump, and her hunger would be satisfied. You simply cannot withhold food and water from anyone, unless you are wanting them to die.

She has outsmarted us. She is smart. Eating is uncomfortable to her and scary, especially when she is on the verge of a cyclical vomiting episode.

What is truly required to wean someone off a tube is total starvation. They like to see crystals in your urine to show that they are truly dehydrated. Now, I will absolutely not do that at home. I will not bring her body to dangerous levels of malnutrition and dehydration. I'm not a doctor. She needs to be in a hospital, getting her levels of everything checked often. She needs a therapist to help her deal with her fears. She needs a feeding therapist to help her with her chewing.

The Children's Hospital of Orange County is where I'd like her to go. It's a three week program where she lives there, as do I. Now, the thing that makes me ill is that Strong Boy B is two years-old. He needs his mama. He's still nursing and I will not take that away from him at this point. It's been a beautiful part of our relationship and I've dealt with so much horridness by way of trying to feed Sweet B, that Strong B's nursing is my saving grace. He'll have to go with me but live in the Ronald McDonald House with my husband or my mom. He won't be allowed to see her except on the weekends. That's hard stuff. But I'm willing.

I've heard there is a long wait for the program, and I don't know that Medi-Cal covers it, but she is an optimal candidate.

Sometimes they'll admit a child to our own hospital for a tube-weaning program of shorter duration. This is probably my first choice.

I have written the feeding team a long letter stating that I do not want to leave there with suggestions that I already know. Trust me, I could teach a class on tube-feeding and how to get kids to eat, theoretically. The answer doesn't lie in peer pressure or taking them to a fun restaurant and having other kids eat around them. It's much deeper than that. And we've done everything. We used to often get suggestions from people that made us want to scream. Have you tried this? Have you tried that? I think the suggestions have stopped because people either think we are clueless and there's no hope for us, or they've seen the light, that there really is a problem that is not easily handled. I know they did it out of kindness, but we still wanted to scream. I really don't want suggestions from the feeding team tomorrow that make me want to scream.

I will go into the evaluation with my open heart and a sense of urgency. Let's take care of this NOW. We are doing a disservice to her by not doing something BIG to get her off this tube. The time is now.

I've already spoken to Sweet B about why we are taking her and why we want her to eat. She knows.

Yesterday I finally felt such peace about tomorrow. A friend has been praying for me and I could feel those prayers. Today I woke up feeling sick with anxiety. I have foot surgery on Friday and once Saturday rolls around I will feel so much better. It will be over.

Please pray for us and the feeding team. I know that they want the best for their patients and I know that they care deeply. Please pray that God will give them the wisdom, and that God will give me peace and understanding from whatever is answered. If I have been wrong in which way I desire her to be treated, I pray that I am not stubborn and that my ears and heart will be open.

And most importantly, please pray for Sweet B, that she would not be afraid and that she would show those doctors that she has a desire to eat. Thank you friends.

It's About Time for an Update!

noreply@blogger.com (Sweet B's Mom) — Mon, 04 Aug 2014 21:56:00 +0000

I've thought about this blog a few times recently and I realized that I left it on such a bad note! I think that most of you who read this know me in real life, and therefore didn't need an update on Sweet B. But there are those of you who don't know me and those of you who know me from a distance, and you've taken the time to know about her, and so I would like to tell you how she is! It's been hard to acknowledge what I've written here and reread our trials, but I've come to the place where I can.

At one time I believed that I would be able to close this blog with a neatly wrapped up happy ending. Something like, "And she had all of those problems but she got through them and we're all the more stronger for it." Well, I can't wrap it up like that now but I have such wonderful things to share!

I left you with posts of how her cyclical vomiting syndrome (CVS) was ruling and practically ruining our lives, as well as a surgery to get rid of her stone-infested gallbladder and too many hospital stays. The past year has been a dramatic change. She started preschool in a special needs school, where half of her class has special needs and half are typical. She has blossomed in her speech and is now speaking in complete sentences a lot of the time. She just turned four but her birthday was supposed to be in September, so in micropreemie terms, she's not four yet. We've learned that she is VERY social, taking after Mike and his mom, who will talk to anyone about anything and befriend anyone in a second. For a few years now it has been my plan to homeschool Sweet B and Strong B completely (and being a former public school teacher, I was totally against homeschooling!) Now I see that she thrives with other people, so I'm considering sending her to kindergarten and then doing homeschool a partial portion of the time, like three days a week, which is actually becoming more common these days.

She's funny. She's sweet. She doesn't throw temper tantrums (unlike Strong B :) and she is very easy to care for behavior-wise. She's got a huge imagination and can sit in a car while we drive for hours, pretending that her fingers are people and that they've got lots of funny scenarios going on. She's beautiful. Oh my goodness...she's a beauty. She's got determination and will let you know if it's unfair that you're not giving her something that she needs. She tells us that we are "annoying her" and let me tell you, Mike does not take that well! She loves her little brother and makes him play house with her. She's got the best personality!

Medically, she's still got issues and these issues are very exhausting for us physically and mentally, but we are getting so much better at it.

She's still on the feeding tube for 99.9% of her calories. We give her bolus feeds three times a day and she's on a continuous feeding pump all night. She has started eating small bits of yogurt, smoothies, ice cream, Popsicles, cheese, Oreo cookies, and graham crackers. I am very confident that she will eat someday. I've learned not to give her a deadline or make any predictions with a timeline.

She's still in therapy for her cerebral palsy because she has left-sided weakness. She's starting to be able to walk up and down curbs and stairs by herself. This summer I stopped the physical and occupational therapy and instead enrolled her in swimming and dance lessons. She did so well in both and I'm happy that we took a break!

The biggest medical issue is her cyclical vomiting syndrome. Remember that she's unable to vomit due to her stomach being wrapped around her esophagus surgically. I can't tell you how much better she's doing with this! We have a system down with her and her school nurse has the system down as well. At one retch we give her zofran and we give her Ati.van at the next retch. We've been able to significantly shorten or abort her week-long episodes, and this has dramatically improved the quality of her life, and ours as well. We are able to predict how much water versus formula to give her in her feed, and she is able to tell us if her head is pounding or if she needs medicine. She does need medicine quite often and we are always watching her for any sign of an episode: retching, little coughs, pale face, watery eyes, even more left-sided weakness where she tilts to the side quite noticeably, grumpiness, crying, tiredness...It's often a guessing game!

There's so much more that I could write, and I actually have a few more blog posts that I'd like to get up soon regarding how I am doing navigating the needs of my daughter as well as the energy of my typical son. (We use the word typical instead of normal, because really, who is normal??) You might recall that it's been quite a struggle for me...I want to put it out there so other special needs moms can read it. We need to be honest! I'd also like to tell you about how we will be meeting with the feeding team very soon and what that will entail.

I try to remind myself often that she came from very very small and scary beginnings and that she is doing very very big things that we NEVER even imagined that she'd do!

*I realize that the font changed at the end. I can't edit this from my phone, so it'll have to stay.

I love that you can see her g-tube poking through her leotard.

Hopeful For Surgery on Thursday

noreply@blogger.com (Sweet B's Mom) — Wed, 17 Jul 2013 06:15:00 +0000

*I found that my words did not flow as they usually do when I sit down to write this blog. I think the exhaustion is getting to me. Please forgive the uninspired writing in this post.

After my last blog post, Sweet B did end up being admitted to the hospital. It was stressful as the Ronald McDonald House (RMH) did not have an opening the first night and so I had to find a hotel room with Strong B. It was also stressful because Sweet B was in a major CVS episode and wouldn't even do anything but cry. It was awful. They did metabolic testing on her and we won't get any results for another week most likely. (It is very, very scary to have this testing done on my child. The thought of it makes me want to vomit).

They did find that her gallbladder has gone from having "sludge" for a year, to having one stone in April, to having several stones as of now. Her surgeon who she has had before recommended removal because apparently leaving it in place is dangerous as it can cause the pancreas or liver (I think) to swell or something like that (I really have no idea--I just know that it is dangerous). He said it could be causing her a colicky type pain. She is not in screaming pain because it is not inflamed. It probably has nothing to do with her CVS and its removal will most likely do nothing for her retching. But...it could be causing her a bit of pain, which could trigger an episode. Who knows?

The surgeon is hoping that he will be able to remove the gallbladder laparoscopically which is the typical way it is done, with a one or two night hospital stay. However, Sweet B has had surgeries before in the belly area and he will need to find virgin tissue, or else he will have to do this with an open cut. Please God no. The healing of that is really hard and she doesn't need another thing that hurts.

On another note, you should see her scars. They are beautiful in a strange way. She has her scar on her back from her spinal cord untethering. She has the feeding tube scar and the big scar where they cut her whole belly open to do her fundoplication. Then she has the little scars on her feet from being stuck with needles daily in the NICU. If this surgery is laparoscopic, I think there will be another four small scars. She is one brave girl and I love those scars.

Anyway, we were released from the hospital on the third day and she was still in episode and we still had her on a lot of meds. After two more days at home she suddenly came out of it. And we all breathed a sigh of relief. Because I always fear that she will not come out of an episode and we will spend years and years in the hell that is an episode. They scheduled her for surgery on Thursday the 18th. I decided to keep her inside so as not to expose her to any illness so that nothing would postpone the surgery. A day later she started coughing, and got a fever, and not swallowing her spit again, and the coughing made her retch...and she started not tolerating her feeds either by her pump at night or by bolus feed through the tube during the day. We don't know if it's another virus, or the same virus, or another episode, or her gallbladder bothering her. She cried suddenly tonight but she doesn't point to a location of pain. We are so confused and worried and wish that she could just tell us what is wrong. She has language but it is delayed and she is not speaking in sentences yet and is not able to verbalize a lot. We ask her where it hurts and she isn't able to say.

Last night she spent the evening in our bed coughing and I had to keep stopping the feeding pump all night. I don't know if it's virus coughing or CVS retching. I called the surgeon's nurse today and told her that I don't know what is going on and she said they would evaluate it on Thursday morning and tell us if they will do the surgery or not. I really pray that they will do it. I just want it done and I want her out of any possible pain that the gallbladder might be causing her. I want my mind to be able to rest and my heart too.

My mom came over yesterday and gave me a twenty and told me to go out get something for myself, so I went to the thrift store and bought some shorts. I didn't get rid of the baby weight after having Sweet B and I went right on to have Strong B, and both pregnancies I wasn't allowed to exercise or do anything, so needless to say, my clothes do not fit. And why am I not one of those lucky women whose baby weight magically falls off with nursing?? Strong B is still very much getting most of his calories from nursing, and he's eleven months old nearly, so I'm producing a lot. You would think that would help! The only thing it does is give me an extra 7-14 Weight Watcher points. If I stopped nursing I know it would come off a lot quicker, but nursing is more important to me than being thin. I've lost a lot in the past five months but I only have one pair of shorts that fit properly in my current size, so I went and got some that will hold me over until my next size down. It feels so good to be getting the weight off and it was really somewhat fun until the last month happened and I haven't been able to exercise or cook. My hope is that I can get back on the wagon soon. I need it! Finally doing this for myself and getting myself back has been so good for me. Anyway, it was WONDERFUL to get out and did me so much good, especially since I spent the night dealing with a coughing Sweet B and her pump.

My prayer is that she will be strong enough for her surgery on Thursday. We are all so tired. We feel isolated. Summer is always my favorite time of year and spending the last six weeks with her sick and in episodes and fighting going to the hospital have really done a number on us. Mike and I joke that we better not see the other one secretly sneak off to the car with a suitcase!

I will say that I had my best stay so far at the RMH because my dear friend was there whom I met in the NICU three years ago. Her daughter was recovering in the ICU after her surgery. We met for our meals and it was almost...fun? Okay, it really was miserable as it usually is and nowhere near fun but having a dear friend there made it manageable. We said it was like summer camp....but the kind of summer camp that you never want to go to!

We are breathing in and out and hoping that our lives will settle and that we will be able to just breathe without fear or worry. It's coming, right?

How We're Coping with Being Admitted to the Hospital

noreply@blogger.com (Sweet B's Mom) — Sun, 07 Jul 2013 05:03:00 +0000

Sweet B was very close to being admitted to the hospital today. Against our better judgement, we met our friends at the zoo. She had been doing decently yesterday so we thought that her episode had passed. This morning when she woke up the retching and begging to go back to bed began. In my heart I knew that we were doing the wrong thing, but we had already made plans with our friends. Inside the zoo, her face became very pale and she began retching hard. I knew that it was time to call the hospital. Our normal protocol is to wait 24 hours and give her meds to try and stop the attack. I got very scared and didn't feel that I had it in me to wait. This has been going on and off for almost a month. I called the on-call GI who agreed that she needed a room. We left the zoo and began driving to the ER but then realized that we would be waiting hours in the ER and it would just be better to go home and wait for the room.

As soon as we got home, after an hour of driving, we got the call that the room was ready (of course). The state of my house is a disaster because I simply have not had the time or the energy to clean it. My plans were to clean for an hour and do as much as I could. I couldn't bear the thought of my mom or anyone coming to pick up stuff for us during our hospital stay and seeing what had happened to the house. I ran around desperately picking things up and doing dishes and meanwhile Sweet B seemed a tiny bit better. We decided to keep her home for the full 24 hour period to see if we could abort the attack. I called the GI and she agreed to trust my instincts as the mom.

A few days ago it was brought to our attention that Cyclical Vomiting Syndrome (CVS) could be due to other problems such as metabolic disorders or other things. This lead me to google which lead me to very bad things. I've seen that CVS can be a sign of fatal diseases such as mitochondrial disease. I told the on-call doc that Sweet B needs to have this particular test done to see if it is a metabolic syndrome. She agreed to it. Embarrassingly I asked her if Sweet B was going to die and if she had these diseases and she couldn't assure me of anything--she doesn't even know Sweet B. I began crying and told her I had been googling and instead of telling me to get off google, she said that these things could be wrong with her and that's why we have to test. CVS could mask a deadly metabolic disease. In one-third of children with CVS, they have metabolic disorders or mitochondrial disorders, some of which are fatal.

I've not been well and frankly, I've had two friends tell me that they are concerned about me. My weakness is google and obsessing on all of the things that could be wrong with her, and for the last few days I have been a wreck--googling and researching and looking at studies that have been done. Sometimes knowing too much is not a good thing. The fact that she went into full-on episode today was enough to almost throw me over the edge.

The plan is to re-evaluate tomorrow morning (Sunday morning), and if she is still in episode, then we must go. Meanwhile tonight I am packing and cleaning because I just don't want my house like this. It makes me feel like a terrible homemaker and mom and I'm praying that I will get a lot of it done tonight, in the middle of administering meds and nursing the baby and watching him of course. So far I've done dishes and organized a lot and Mike has vacuumed. There is still so much more to do but I will have to let it go. I have done what I can. I think I will sleep with Sweet B tonight. I am scared of all of the meds we have given her.

It has become clear to me that I need support with raising a child with a chronic illness. CVS is devastating on the lives of the person who is ill and their families. Adults are unable to work and children miss so much school and it is completely disabling. We have gone from having a micro preemie who didn't eat and was given a g-tube, to a child with a tethered cord, to a child with cerebral palsy, to a child whose CVS diagnosis makes the quality of her life and our lives diminished. I obviously need some sort of support group and a counselor who can give me strategies to get through her episodes, because by day four I am a mess. Watching your child suffer endlessly and not knowing why and not knowing if she is going to live, is something that should only be reserved for the people in hell, certainly not a family who has given up everything to give this child the best shot at life. (And maybe, just maybe, God could have had a little empathy for me and realized that I am not the strongest person in the world, and maybe another mother would have handled this much better).

It has been a really terrible month that began with a car accident that I was in with the kids while on the way to a friend's home. It was very scary and it was very much not my fault, but there were no witnesses and therefore her insurance has refused to pay, so we are left with a deductible to pay, which we don't have it all, and a dinged up car (our only car). Then began the retching, which turned into a virus which all of us got, and then turned back into retching and this is when I lost it I suppose and I could not clean my house. Where was I going with this?.....Oh, I guess I was just saying that this has been a crappy month.

I have learned through speaking with other families of special needs children, that you quickly learn who is there for you...Who will take the time to pray for you or offer you kind words of encouragement, through texting or message. And you unfortunately learn who won't do these things. It is an eye-opener certainly. Was that a bit too honest? Probably. But it is the truth and I've been so fortunate when I see such good character and empathy in people. I am endlessly grateful to those who are keeping me above water right now and have been there through this most difficult journey over the last three and a half years. It is my promise to do the same for you when you experience hardship and need someone to hold your hand and tell you that it's going to be okay. Humans need other humans. I've met a few friends recently who are very much encouraging me right now and I hope to one day repay that favor.

I will try to give you an update tomorrow, but I cannot promise anything. Today I was completely unable to talk to anyone due to fear. I wrote a very small group text and sent it to those who knew what was going on today. It was difficult to even do that. I just don't have it in me to explain the meds and what I'm doing to help her and what our plans our. It's exhausting. So it was a very general message.

It must be of no surprise to you that my faith is struggling. Hell, we haven't even been able to go to church consistently because she always is having an episode. When we finally decide to try a certain church, she is either in an episode or we or too dang tired, or we know that we have to take advantage of a good day and go and do something fun.

So while my faith is really not there, it is about as big as a mustard seed, and according to God that is all that I need right now. I accidentally spilled mustard seeds in my kitchen and they are very small, but I'm thinking that pretty much sums up the size of my faith right now. So I call on you, my faithful Christians, or whatever the hell you are (see--if I was a faithful Christian right now I would not be using such words as "hell"), please pray, or send out light, or do a rain dance for our Sweet B...She really needs it and so do we.

No Hospitalization Please!

noreply@blogger.com (Sweet B's Mom) — Sun, 30 Jun 2013 07:18:00 +0000

Here goes the task of writing a blog post with enough information but not too much information. I don't want to sound pathetic. (Why do I care? This is life. I am not one to sugar coat things or pretend that my life is perfect). It's a shame that the only time that I write posts is when something bad is happening. It's a shame because there is so much good that is happening in Sweet B's life compared to what we were told to expect. This is something that my husband continually reminds me.

It could be so much worse.

We didn't expect her to live and we certainly never expected her to walk or talk or go to school. So this is something that we must remember. But seriously, who wants to have to repeat a mantra like that over and over?? Let's be real here. Our life is certainly not easy right now, nor has has it been easy for the last three and a half years (since mid-pregnancy with her) and I suspect that we have many more years of it not being easy, and it might not ever be. Being born at a pound and having a tethered cord causes problems. And we see the effects of her being a micro preemie every day. Some are so fortunate that they "grow out of it" and meet their milestones and aren't met with any lasting impacts. Sweet B has definitely been impacted by prematurity and I believe she will feel this impact for her entire life.

Strong B exhausts me in a physical way. He's a typical baby. He cries and demands to nurse and wants attention and love constantly. Sweet B exhausts me emotionally. The worry that I carry for her in my heart weighs me down in a way that I don't even want to describe here.

Since I have had Strong B and he's so typical, I have become keenly aware of just how difficult and different our life is with Sweet B. The hospitalizations and g-tube and therapies and constant appointments is such a contrast to the normal mom exhaustion that I face with Strong B. He eats. He is almost walking. He went from crawling to cruising along furniture within a week rather than a year. We don't have to fight for every single milestone with him. This has been so healing but has also showed me just how different life with her is, and how much more of a daily struggle that she faces as opposed to a typical child.

Sweet B's Cyclical Vomiting Syndrome (CVS) is more challenging for us than the fact that she only eats through a feeding tube. In fact, living with a feeding tube for the rest of her life would be easier than living the rest of her life with CVS. Her cerebral palsy is easier to deal with than CVS. Every month, on the same day each month, Sweet B goes into a CVS episode. We try to ward it off with medication but nine out of ten times this doesn't work. She becomes a child whom we don't know. It is called a migraine of the stomach. She cannot open her eyes fully. She stops talking for the entire week. We don't see her smile ever. She hits all of us. (Disciplining a child who hits because she feels bad is quite a puzzle to figure out, and we haven't figured it out yet. I'm hoping her school will help me with this). She retches nonstop but cannot throw up because of the surgery she had. If we dare to go out in public people stare because she doesn't swallow her spit, she retches, and then large amounts of mucous come out of her mouth and pools into her lap.

Today we were in a parade with the moms club that I am in. I was very embarrassed, worrying that people thought I was crazy for making her go out like this. Let me backtrack and tell you that she had a CVS episode for five days and then she got a virus. We all got this virus that made us cough and feel awful. Even baby boy got the virus. As soon as it got better she went back into a CVS episode. So that's two weeks of her (and us) being completely miserable because she's miserable. I had to go to the parade today. I had to join the land of the living and just get out and socialize. Unfortunately I spent the entire time worrying that people thought she was just having a tantrum or that I had no business having her out. My original plan was to just have Strong B in the parade, but I put Sweet B in her cute dress and I so badly wanted her to have a good time, but it didn't happen. She was retching as we walked and we put the umbrella up on her stroller to hide her and I wiped her mouth as we walked and she retched. It was about as fun as it sounds. It was nice to get out though. I really am serious about that. I need to get out more, especially when she's having an episode. Last night I took Strong B on a date to the mall, and I had such a good time trying clothes on him and just feeling like a typical mom for the hour that we were there.

Sweet B is set to start a very special preschool program in August, and my fear is that every time she gets a virus, a cold, or the flu, that this will put her into a CVS episode and she will miss two weeks out of every month. As it is she is probably going to miss a week of school each month from her monthly CVS episodes. I so badly want her to be able to attend school, make friends, and just live a normal life. I am possibly planning on home-schooling her after preschool but I truly believe that she needs to attend this special needs preschool to get her going. I've heard amazing things about it and have met some of the faculty and found them to be so caring.

The hardest part is seeing her suffer and not being able to do anything. Her personality is normally so vibrant. She chases me around the house, demands her tv shows, runs in to every room that I'm in and slams the door, and when we get out of the car she rushes to the door so that she can slam the house door on us. She loves to dance, just like I used to, and she has no qualms about performing for people. She loves imaginative play and has very involved scenarios going on with her Little People and horse and cow and her Little People playhouse. She has a different voice for them and it is soooo cute.

The second that her CVS starts, this all goes away and she goes into her shell. Her eyelids don't even open all the way. She turns pale. She doesn't want to be held or kissed or for me to read her a story. She wants to lay in bed all day or stare at the tv. So I watch her from a few feet away and I worry. I cry silently. I wish that I wasn't nursing Strong B for that moment in time so that I could take something to help the anxiety that I feel.

Tonight she had a serious retching attack. She could barely catch her breath, so I held her on my lap and tried to drain everything out of her stomach through her g-tube. Mike pushed on her stomach to try to get the air out (with her fundolipication she cannot throw up or burp, so trapped air is painful). Mike repeatedly pushed on her stomach to get all the air out and as the air and liquid came out I poured it into a cup (a clean cup because I have to re administer it) and I was feeling very sad and wondering if she even loved me. It sounds dramatic but I haven't received a hug or a kiss or even a smile for two weeks. Well, I got the encouragement that I needed when she very lightly stroked my arm a few times and patted my leg. It is such a small thing, but so uncharacteristic of her during an episode, and exactly what I needed to keep going until this particular episode is over.

If she is still having the episode on Monday or maybe even tomorrow, then we will hospitalize her. Her GI doctor wants us to hospitalize her after twenty-four hours of an episode, but the hospital is exhausting. You cannot leave the room. You cannot sleep because the doctors and nurses are always in there. I cannot stay there because I am nursing, so this means that I am home alone with Strong B, without a car, and worrying. The doctors administer the meds just like we do, which Sweet B does not tolerate well and becomes mean. But I feel it's just being irresponsible not to take her if she is still bad tomorrow.

I'm praying that we have our Sweet B back tomorrow, although I've been dealing with this long enough to know that she will most likely be in the hospital on Monday.

Tonight I'm thankful for the things that keep me going: An arm rub from my sweet girl, texts from two very good friends, a baby boy who giggles and crawls frantically to me every time I enter the room, parents who call and text me every day, a husband who has been with me since I was nineteen--for eighteen years and still loves me as much as he did when I didn't know this kind of worry, and my three-legged poodle who runs around like a puppy at nine years old and reminds me that disabilities don't define you.

Tomorrow I'm praying Sweet B will spend the day with my mom who has volunteered to watch her as we try to relax. I don't know what we'll do. I want to take Strong B to the beach but I'll probably see other toddlers and miss my girl like crazy. Maybe I'll just sleep while Mike and the boy watch baseball.

I just don't want to have to admit her to the hospital.

Strong B Has an MRI Under Sedation

noreply@blogger.com (Sweet B's Mom) — Wed, 05 Jun 2013 14:13:00 +0000

I debated about whether or not to write this post, because as usual, I'm concerned about sharing too much. Then about five minutes ago I said, "So what if I share too much?"and decided to write it out, and for one reason only. And that is that I believe in the power of prayer. I also believe in "good thoughts" and "good vibes" and "hugs" and all of the things that people who don't believe in prayer do.

My baby, Strong B, is having an MRI under anesthesia this morning. I found a sacral dimple on him which is the same thing that Sweet B had that alerted us to her spinal cord tethering. I was surprised when I found it, as I first looked when he was born, but apparently I was looking too high.

I went to the pediatrician, who agreed that it was a sacral dimple, and asked if I wanted to "wait for an MRI and just keep an eye on it." Let me tell you something: "waiting" on a sacral dimple means waiting for a limp or becoming paralyzed. And then whatever has happened is permanent. So no thanks, I will not wait for my baby to show signs that there is something terribly wrong.

His MRI is under anesthesia. We hate doing this and have felt sick over this for two weeks. There will be crying from both my husband and I, for both the procedure and the fear over what could be. But we will put on our big kid panties and deal with it.

Sweet B is having a vomiting episode that she started yesterday, so we're hoping that she doesn't end up there tomorrow for a hospital stay.

So could you please pray, or do something, all in the name of his being safe under anesthesia, and his spinal cord being nice and loose and not tethered onto anything.

Thank you!

Two Diagnoses

noreply@blogger.com (Sweet B's Mom) — Thu, 16 May 2013 04:06:00 +0000

It has been almost a year since I have written. I've had conflicting feelings about this blog, and namely, how much of Sweet B's story to put out into the world. I have read several articles about "mommy bloggers" who write everything about their children's lives. What are the ramifications of this? When they are thirteen, will they want the world to know how they pooped in their pants at the park? In my case, will Sweet B want her friends to know her diagnoses? Will she be embarrassed by the pictures of her at one pound and eleven ounces? I don't know the answers and I haven't decided what I am going to do. I want to honor her and her story and allow her to be the one to tell it but I also want the support now. I don't want to feel alone and secretive when we are told discouraging news, as we were recently. So at this point I will leave the blog up, maybe update a lot, maybe not at all, and take it down when I feel like it's time.

My hope is that Sweet B will proudly boast of her fragile beginnings, her diagnoses, and just how much she proved every single doctor wrong.

By the way, "diagnosis" is one diagnosis, and "diagnoses" is more than one. I checked.

First things first...We have been doing really, really great! Sweet B is just blossoming. After a year of advocating for therapies for her, I've actually pulled her out of five of the seven weekly therapies, so that she can grow through real life experiences. I joined a moms group and we go on play dates. I put her in a little gym class with typical kids her age and she does so well!

Oh...I guess I should have told you that she is WALKING!!!! In November, as my Christmas present, she started walking. And our world opened up. Suddenly we were playing at the mall playground with other kids and walking across the sand on the beach and climbing the stairs at the park! Her gait was strange at first, and continues to be a little different, but I don't think that a person who doesn't know her would know that she just started walking a few months ago!

Backing up even further, in July she had her spina bifida occulta surgery to untether her spinal cord. There were some problems with infection so she had a hospitalization and a few other things.

Then in August...I had my baby boy, who I will call Brave B. He became my healing baby. Sweet B is the baby who gave me strength, and Brave B is the baby who is healing my heart. He is beautiful and perfect and he breastfeeds, going on nine months now. He is almost crawling and he is just like my husband; calm, happy ninety-nine percent of the time, and a real joker. And he's just as handsome as his daddy.

Now I will share the hard stuff, because as we've been learning the last few years since Sweet B's birth, there is always going to be hard stuff.

In September she began going through "episodes" of extreme retching. Because of her nissen fundoplication (her stomach wrapped around her esophagus to prevent reflux), she cannot vomit. So she still gags like she is going to vomit, but nothing comes out. Exactly every four weeks, she has a retching episode that lasts a week. She turns pale, drools, stops swallowing her saliva, and completely stops talking. We have to put her on continuous feeds through her feeding tube (yes, she is still not eating), and we are up all night due to her crying in pain. We've made countless doctor visits and we had concluded that she had bowel obstructions due to constipation, since her digestion almost completely stops. That is until the emergency room did an x-ray and found no bowel obstruction. Perhaps the strangest part of this is that suddenly she comes out of it. After five to seven days like clockwork, she is completely better. Like a snap of a finger.

Her GI doctor called me and told me that she knew what was wrong, and before she even told me the diagnosis, I told her what I thought it was, and I was right. Cyclic Vomiting Syndrome (CVS). It is related to a migraine disorder and is probably caused by her tethered cord or the fundoplication surgery. We are learning how to manage this, but it is extremely stressful for all of us. By day five I am depressed and scared. Two episodes ago we had a four day hospital stay and we fully expected to go back this month, and I even started packing for it. However, through careful observation and administering of different medications, we were able to keep her out of the hospital. The disruption that it causes in our lives....is inexplicable. But we will get through this.

My last thing to tell you is something that makes me very, very sad. I will be okay and I know that Sweet B will be okay, but I'm still sad. When delivered the diagnosis yesterday, the nurse and director of the clinic told me that I am allowed to have "my shower moment" and I've had a small cry, but not the long one that is necessary to move on.

Sweet B was diagnosed with cerebral palsy with hypotonia (weakness) on Monday. I was expecting it and I have known it for the almost three years that she has been alive. We went to a world-renowned doctor to hear this. Him and his fellow doctors examined her, looked at her MRI, discussed it, and diagnosed her. Before he came in the room with his news, my husband and I had a brief moment where we thought she had escaped this diagnosis that often goes along with prematurity and being a micro preemie, but we were not fortunate enough. Cerebral palsy is brain damage, and I've known she had this since her MRI last summer, at the same time that her tethered cord was diagnosed. Spina bifida and cerebral palsy don't go hand in hand, but in her case, she just happens to have both.

We have to be on the lookout for several things. Her hypotonia (weakness) could turn hypertonic (tight). If she starts toe-walking or holding herself in strange positions we need to get her seen immediately. She might have to have surgery or braces in the future. Because of her tethered cord, which is now untethered, we have to make sure that she is able to completely eliminate her urine. If she has reflux into her kidney she might have to catheterize herself in the future. BUT...I am not going there in my mind. There are many things that might happen to any of us. This does bring me comfort.

My husband has been telling me that it could be worse. Sometimes that brings comfort and sometimes it makes me angry. Yes, she could have died in the womb, which was very likely. Yes, her brain damage could be so much worse. And believe me when I tell you that I remind myself of that daily. But it still doesn't take away the worry or the sadness.

It is still sinking in. This weekend we are going to Disneyland and have a doctor's note to give them that will likely allow us front of the line privileges. Her nurse told us to advocate for her, and teach her to advocate for herself. Her daughter, who also has mild cerebral palsy, proudly goes into theme parks and demands her front of the line privileges. Just like I hope Sweet B will do someday.

Cerebral palsy can range from very mild and not noticeable to very severe. Sweet B's is mild at this point and I pray that it stays that way. It is not progressive because the brain damage doesn't get worse, but the effects on the body can be progressive. Believe me when I tell you that I am going to do everything in my power to keep this girl as strong as she can be.

Cerebral palsy sometimes affects cognition, but often times it doesn't. This means that Sweet B could be a doctor, or a teacher, or whatever she wants. And I'm not just saying that. She's a smart cookie. Even people with severe CP who cannot talk, can use communication devices, and there are doctors and scientists and engineers with CP. It is brain damage that affects the muscles and muscle coordination. Sweet B will always have it, although we can do many things to help her and empower her.

This also explains her dyspagia, or poor swallowing ability. Children with CP with hypotonia often have feeding difficulties. The good news is that it gets better. I know that she will eat.

In the NICU they called her sugar and spice and she is still like that today. She's feisty and demands that I give her things and follow her around and when I'm lucky she'll give me a big hug and a kiss. Or she'll grab the glasses off my face in front of a large crowd as she did the other day and thoroughly embarrass me, as every parent has experienced.

I know this blog post contains two diagnoses that I didn't want her to have. However, I couldn't be happier with her progress. She is like a caterpillar turning into a butterfly. She is making friends. She dances and can almost do a forward roll! She loves her little brother and she loves to say his name.

We spend our days going on play dates and going to the park. We nap and we sit at the table and eat (or rather she eats one bite and watches us eat). We play in our backyard. We read and laugh every day. We are happy.

This week I have a lot to process and honestly, I'm sad. But I know that as usual, I will move on and become stronger because of it. I will leave you with one last illustration of how blessed I feel to live my life...

During our first little gym class I watched her walk across a balance beam (holding my hand of course). I watched her stomp bubbles and pull herself up on a bar. While things like this are an everyday occurrence for most parents, I screamed and had tears in my eyes throughout the entire class. I just couldn't believe that I was so lucky to be able to see this miracle happening before my eyes. My daughter was running and climbing and stomping on bubbles! Because of her, I am able to see just how miraculous and tender this life truly is.

Good News!

noreply@blogger.com (Sweet B's Mom) — Wed, 06 Jun 2012 18:01:00 +0000

Yesterday we had the appointment with Sweet B's neurosurgeon. While the answers we got weren't everything we wanted to hear, I'm very happy.

Her tethering surgery is going to be simple. They will open up her back and cut the cords, where they are hanging on to a little piece of fat (it's much more complicated than that but this is what my non-doctor ears heard). The surgery only takes 90 minutes and it only requires one overnight stay! He said that her fundolipication surgery was much more complicated than this. I think the fact that the hospital stay is going to be short this time is what is making me happy. Seriously, being pregnant and staying at the hospital was exhausting.

The part that I didn't like hearing was this: The damage has been done in her right leg and foot. She is going to require physical therapy to help her walk normally. The physical therapy is not a big deal for me. We already go weekly and love our therapist. We had thought cerebral palsy was causing her to not be able to walk, so I'm sure that our therapy will look very much the same. But it's the fact that the damage has been done...And that if we would have caught it she wouldn't have this problem. A good friend of mine whose husband is a pediatrician, told me that a pediatrician wouldn't have caught this either, and that I should not feel guilty. This made me feel a bazillion times better. I just want to make things easier for her, you know? I try so hard to give her every opportunity and I wish I could have given her this opportunity earlier, before the damage.

She might have issues with emptying her bladder fully, which could potentially reflux back up into her kidneys causing damage. We are going to have to teach her to sit for a while longer on the potty to make sure that everything has come out.

The neurosurgeon said that with therapy she will learn how to use the leg and foot to the best of her ability, and she might not even have a strange gait. I think about how her daddy is an athlete and how I was a dancer, and it saddens me that she might not have this opportunity...But then, THIS is what happens:

I think of all of the moms whom I met before B was born whose babies had died due to stillbirth, prematurity, and all of the other reasons that a baby can die. I think of the moms that I have met in the special needs community who are dealing with so much more than we are. They would welcome Sweet B's problems. I only have to look at Sweet B's beautiful face to be reminded of how fortunate we are that she even made it into this world alive. I think of the promise that her future holds (which by the way, every child's future holds promise no matter the diagnosis).

For some reason this was part of Sweet B's journey, and although it saddens me, we must move on!

We are still working on the insurance thing. Ironically, my husband's small insurance business is the reason we don't have insurance. Imagine that!

I've learned that even though Sweet B has a feeding tube and speech and motor delay, that her "developmental delay' diagnosis doesn't get her the therapies and insurance that she needs. So I must fight and fight and fight and fight for all of it. But she deserves no less.

We are thinking that her surgery will be in the next few weeks as I want it done with ASAP. We've got a baby coming in ten weeks and B needs to be all healed up!

And it's only one more week of continuous feeds until we can start feeding her bigger amounts. It's feeling like a prison here and we're getting restless. I can take her to the park or beach or shopping if I want, but the continuous feeds and the pump I have to carry around make it exhausting, especially since I can't drink a huge caffeinated mocha to make it all seem a little easier ;)

I must go now to attend to B, whose new favorite word is "more." What does she want more of, you ask? Everything!

The Latest News

noreply@blogger.com (Sweet B's Mom) — Sat, 02 Jun 2012 04:30:00 +0000

I wrote this post about five days ago and decided to wait and publish it when I was ready. I find that when I first hear bad news, I need a while to wrap my brain around it. Then over time, I (usually) come to terms with it and am able to move forward and make the best of the situation. I feel like I'm finally in the spot to write about it.

Mike and I have received some bad news regarding Sweet B. This is a difficult time for us, but we are remaining strong. Every single prayer on face.book or texted to me has given me the lift that I need at the exact time. It seems that when hardship befalls anyone, people tend to step away from them. They don't know what to say and often try to leave them alone. This whole special needs parenting thing has been very isolating, so please know that when I do receive an email or a text or acknowledgement, it means everything to us.

Sweet B remained in the hospital for a week after her fundoplication. It is a rough surgery and I cannot imagine any child getting this surgery and not getting a g-tube at the same time. Two words that I am sure we will use in our daily vocabulary until this feeding tube comes out, are retching and venting. She retches and is unable to throw up and her stomach is very uncomfortable due to the trapped gas since she cannot burp. We have to hook a tube up to her belly and vent her, which is essentially her throwing up into the tube through her stomach which relieves the pressure. We did this from 12 am until 2 am last night and until her tummy begins feeling better, and even after that, we will need to continue to do this. I am still happy that she had the surgery and believe it will help her in the long run. Seriously!!! Even though the last two days have consisted of her crying nearly all day while being hooked up to her feeding pump for 24 hours, it's still worth it. (Notice that I'm trying to convince myself of this...) My thought is that without throwing up all of the time, she will want to eat. I think it will help her greatly with her oral aversion, which is why she stopped eating in the first place.

This is Sweet B trying not to smile at us in the hospital. She was so mad about the surgery! How dare we not consult her?!

The morning of Sweet B’s departure from the hospital, the neurologist called and told me that she had bad news, which is that Sweet B’s MRI revealed that her spinal cord is tethered. This has nothing to do with her being a micro-preemie. If left untreated, it leads to paralysis of the legs and loss of bowel and urinary function.

We have been under the assumption that she has mild Cerebral Palsy from being a micro-preemie, which is common. She might still have this as the MRI did reveal “mild cerebral volume loss,” which is brain damage, but the doctor is not concerned. It is not significant. The neurologist said that her brain is fine. And considering she was the size of a flea when she was born and starved of all nutrients in the womb, I’d say we are pretty darn fortunate!!!! It is common for micro-preemies to suffer from this and in her case it was due to not getting enough oxygen or nutrients through the placenta. We are so incredibly fortunate that she has normal cognitive function. She sings, talks, interacts, and has opinions on everything. And for this I am so grateful.

Sweet B will need neurosurgery on her spinal cord as soon as possible. It might be one surgery or many. We will not know until we meet with the neurosurgeon on Tuesday. She already has a strange stance with her right foot and cannot cruise to the right. This damage might already be done. It might be able to be fixed or somewhat fixed. Most often, when the damage is done, it is already done. This makes me very sad. We will not know if her bowel function and urinary function has been compromised forever. We will see when we try to potty train, which won’t happen until after she is off of her feeding tube because potty training a kid who gets fed 15 ounces overnight is impossible. She will also undergo testing, probably very soon, regarding urinary and bowel function and possible kidney damage.

I wish I could say that this surgery will fix everything. My biggest hope is that it has not affected her bowel or urinary function. To look at this beautiful little girl who has already been through so much, has her whole life ahead of her, and to know that she might not have control her bowels ever, hurts. But I have been very careful not to jump ahead of myself. My hope is that we will fix this, and it will enable her to start walking. And as for the bowels/urinary control, let's just cross that bridge when/if we get to it.

She will have to be monitored for life, as the spinal cord can re-tether, which would present with symptoms such as loss of bowel or urinary control, or bodily movement. Twenty percent of kids with a tethered cord re-tether.

I don't know much about the surgery. I have read that some surgeries are easy to recover from and some are hard. Some kids are vented and sedated while they lay flat for days so that the spinal fluid doesn't leak and some only lay flat for a few days. I'm doing my best to not imagine the worst and wait until the neurosurgeon tells me the plan.

The thing that bothers me the most about this is that I feel like I am to blame. In the NICU I demanded that they do an ultrasound of her spine, due to her sacral dimples. The did it and said that the dimples did not go very deep and her cord wasn't tethered. So since then, every time a doctor asks about them, I say that they have been checked out and are fine. Come to find out that an ultrasound really isn't sufficient enough to say whether or not a spinal cord is tethered, and that an MRI really is needed. My husband tells me that I have done the best that I can. I made sure that she get an echocardiogram to see if her holes in her heart have closed (they did). I've ensured that she has gotten all testing done that doctors have suggested for everything. I beg for more therapies and am always trying to get her more services. So to know that I missed something that has probably caused her permanent damage, kills me. Ahhhh...the motherly guilt that I am becoming all too familiar with.

On the day before we were released from the hospital, we received a call from Medi-Cal. This is where Sweet B receives her insurance. We own a small business and because of this, don't have health insurance. Making a very long story short, all of her benefits were taken from her and we were left with an incredible amount to pay for her future surgeries, medical equipment, and appointments. For the next 24 hours I cried and wondered what would I do. How did this happen? The worker at Medi-Cal was essentially evil, and refused to tell us how to get help, where to go, what to do. The horrible part is that Sweet B had already been approved for the year, and the worker took it upon herself to "set things straight"and take away her approval. We believe that we do qualify for help and now I am spending hours daily on trying to get this help.

Without going into detail, we desperately need this insurance. Without it, I don't know what we will do.

She doesn't qualify for free insurance because she doesn't have mental retardation, epilepsy, and her neurologist won't diagnose her with cerebral palsy because her cord could be what is causing her delay in gross motor development.

If you could, please pray that she will get insurance.

Please pray that her tethered cord has not caused damage to her bowels or urinary function or her kidneys, and that she will regain the movement to her right.

Please pray for this baby in my belly. (I realized through some comments that I hadn’t told you yet that I am pregnant. I am! Almost 26 weeks!) He needs his current “home” to have normal blood pressure and feel calm. And he is a “he!” (Developing normally with a nice fat placenta in the perfect spot with plenty of blood flow to him, set to come out at 36 weeks through a c-section!!!!!!).

These are the truths that we know:

-Sweet B is STRONG!

-We are so blessed to have her when she should have died. She talks and has normal cognitive function and sings and does so much more than we thought she ever would.

-All of these issues can possibly/hopefully be fixed. She has her whole life ahead of her.

-We have a wonderful, strong marriage, and the last few years have only made us stronger.

-We have people in our lives who give us encouragement and who love us.

We don’t know why it has been one thing after the other the past few years, but we know that we are so fortunate to have this little girl who means the world to us (even though she is very high maintenance!)

We see the neurosurgeon tomorrow and my prayer is that her cord tethering is not severe, and that we can get in for surgery as soon as possible so that she can be healed by the time the new baby comes.

Within a week and a half, we should know if Sweet B (and in fact all of us) will be getting the insurance that we need.

I figure that I will be feeling a whole lot better after I get some answers about both of these things.

And as the saying goes, “It could always be worse…”. (although I exercise caution when saying this…Everyone knows our luck recently!).

Surgery for Sweet B

noreply@blogger.com (Sweet B's Mom) — Sun, 20 May 2012 05:25:00 +0000

Three months without a post?!?!

I'm terribly sorry. Please forgive me. My computer broke and I just recently got it fixed. We also moved to another town to be closer to Sweet B's therapies and doctors. But I wanted to catch you up on one important thing before I post about the going's on Sweet B's life in all of the other areas.

Sweet B is having surgery on Thursday. I am not excited, and I'm actually quite terrified. Mike is too which is highly unusual for him. To give you an idea about his nerves of steel...The hour before I had Sweet B (at one pound eleven ounces), he spent making funny faces at me and cracking jokes, and modeling his scrubs.

Anyway, my mom told me that we do not have a choice regarding this surgery, and she is right. We didn't have a choice when we placed Sweet B's feeding tube, for she was only taking in six-eleven ounces a day, when she needed a minimum of twenty-four. In this case, her reflux is not getting one bit better and she is almost two.

Let me back up a bit and explain how this came about.

One year ago when we had her g-tube surgically placed, she was also supposed to have this same surgery, a Nissen Fundolipication. (In simple terms, they wrap the stomach around the esophagus, making reflux nearly impossible, as well as throwing up or burping, forever). An hour before the surgery the surgeon pulled us into a room and told us that he was extremely uncomfortable performing this surgery. He said that she was neurologically normal, meaning that she does not have chromosomal issues or brain damage. It was and still is too early to tell if she has a mild case of cerebral palsy (which is brain damage) due to her severely small size at birth, but regardless, he did not want to do the surgery. She also wasn't aspirating on her reflux and she hadn't gotten pneumonia. She was having "failure to thrive" but he felt that would be taken care of with a feeding tube. So, a few weeks later after more hospital stays involving a nasal-gastric tube, he placed the g-tube.

You need to know that most doctors won't place a g-tube without a fundolipication. In fact, B's pediatrician had told us that there is no way that they would place a g-tube in her without a fundolipication, especially in a baby whose main problem is severe reflux. The reason is that the g-tube placement should be done with the fundolipication is that it changes the anatomy. In fact, when we first came home after having her tube placed, her reflux became so much worse. We called the surgeon begging him to do the fundo, but again, he refused. You also need to know that this surgeon is the only pediatric surgeon in the entire area with that health care system. So NO ONE, including B's own GI doctor, who felt she needed one, could stand up to him.

The other thing you need to know is that I liked this man. I still do. I believe that he was doing what he truly thought was in her best interest. I believe that doctors sincerely want to help and not harm, and who knows, maybe doing a fundo one year ago would have been too much for her. It's a big surgery. I have to believe that there is some reason that she did not have it done.

Anyway, time passes and we have to switch B's health care. We joined an excellent system with doctors whom we truly love and trust. Last week B's GI doctor sent me to a pediatric surgeon to get her feeding tube changed to a bigger size. (Normally feeding tubes are changed by the parents at home, but this particular one can only be changed in a doctor's office with a special tool). The surgeon, a tall and intimidating man, barged into the room, in shock as to why my tube-fed child with severe reflux (who stopped eating due to this bastard reflux) did not have a fundolipication. When I told him that our prior surgeon didn't believe in doing it on neurologically normal children, he let me know that he would never agree to a feeding tube without a fundo, due to the anatomy change that makes reflux even worse. I meagerly said, "Okay I see but can you just change her feeding tube so we can go home and never think of this again okthanksbye?" and he said that we were doing her a disservice if we didn't do it. And that he would only change the tube in the operating room, because the removal is painful and he wants her to have a tube that doesn't require surgery to change. I asked him if the fundo would help her to eat better and he said that he would hope that it would.

So let me explain why the first surgeon didn't want to do the surgery and why the fundo does not mean that we are going to take the tube out and she will magically eat.

The complications include a few things, but many kids dry retch after a fundo. This means they gag and gag and are unable to throw up. This can go on for hours apparently which as you can imagine, is stressful to both parent and child and doesn't really encourage someone to want to eat. Too much of this retching can cause the wrap to become undone, and you have spent all of this time and recovery on nothing. Also, a fundo can turn the stomach into a "pressure cooker" with one less way for air to escape, especially since she won't be burping or throwing up (most likely) They can get gas-bloat sydrome. Some children have to go on continuous feeds through the tube, instead of bolus (bigger) feeds during the day after the fundo. So she would be hooked up to her feeding pump all day and night, instead of just at night, like she is now. This last one terrifies me, and that is that the surgeon could wrap it too tight, causing her to be unable to swallow anything. In which case we would have to wait and then have the area dialated in hopes that it would help. (I asked the surgeon about this one and he said that he just wouldn't wrap it too tight). The scary thing is that these complications are very common, as in we can expect at least one of them.

And if this helps her reflux to go away, then why won't she just start eating? Kids just naturally eat, right? Wrong. She has learned over time that eating means throwing up and pain. Not only that, but she does not know how to eat most foods. She can eat a few Cheetos which disolve in her mouth, but other than that, that's it. She doesn't chew well and she certainly doesn't know how to take that food, form it into a ball, and move it through her mouth and down her throat. That which comes naturally to most kids does not come naturally to tube-fed kids.

So we can hope that this will help her. That the fundo won't be wrapped too tight and that it will completely stop her reflux. We can hope that it will mean that we can throw away her "puke" bibs and that she can sleep in her crib in the laying down position and not the upright one that she has to sleep in now. We can hope that this will stop her from waking up during every nap and nighttime feed coughing and gasping for air. We can hope that my husband can move out of her room and stop sleeping on the floor by her crib every night. We hope that we can stop the nighttime feeding pump and that she'll be able to ingest her twenty-four ounces during the day, which will take her one step closer to tube removal. Lastly, we can hope that the surgery, which is a big one, will go smoothly. I remember during our last hospital stay a child had been in the hospital for six weeks due to complications from his fundolipication.

So if you were going to pray, those are the things that I would ask you to pray for.

I would also ask you to pray for this surgeon to do a perfect job. (Even though he is opinionated and brash, I like him and trust him and believe that he is extremely wise).

And lastly, I would ask you to pray, or send out good vibes, do a rain dance, light a candle, or just do whatever it is that you do, that my anxiety will be kept in control during this time. It is not good for me to be anxious during my pregnancy and this can cause my blood pressure to rise which can cause very bad things for me and the baby. I am trying to figure out the logistics of it all, where I'll stay, who will drive me, if I will be going to my growth scan on Friday alone which terrifies me, and the other problems that come with having surgery at a hospital so far away from home.

I'm considering wrapping myself in Lavender and lighting incense wherever I go...What do ya think???

And that was more than you ever wanted to know about a fundolipication, reflux, puking, and my anxiety :) But please pray or whatever it is that you do, okay? I would really appreciate it.

A Reality Check

noreply@blogger.com (Sweet B's Mom) — Mon, 20 Feb 2012 21:18:00 +0000

Have you ever had a moment that dropped you to your knees, and made you realize just how fortunate you are? I had one tonight and I really needed it.

There really is no way to say this without sounding like a terrible mom...but I'll just say it anyway. The past few weeks I've felt tired of all of the therapies and work that we have to put in on a daily basis. Today I wished that I could just fill up a sippy cup for Sweet B and plop some finger foods on her high chair tray, and she would just feed herself. She's nineteen months. This is what nineteen month-olds do. But as we all know, Miss Sweet B doesn't want to do this (and for good reason) and I don't know when she will do this. The fact is that she will do it when she wants to do it. This is how this little bundle of pure sweetness/stubbornness operates. We've known this since the day she was born.

Yesterday I was supposed to do my homework for physical therapy and have her practice standing up and bending over to retrieve a toy out of a box. I didn't do it until tonight, and I only had her do it a few times before I became tired and gave up.

My husband has been doing the oral feeds for the last two days while I do the tubing, because I just don't have the stamina to do it.

I'm so thankful that this doesn't happen to me often and when it does, it usually does not last long. Usually I am driven to do every single thing that I can to help Sweet B reach her highest potential. But right now...I'd rather just lay with her on the couch and watch TV.

I'm thinking/hoping that this is normal for all moms, and it's magnified in my case because I do have the added pressure and responsibility to do physical and occupational therapies with her, as well as tube-feeding.

I LOVE her therapists and look forward to seeing them every week, but man, I would kill for a week where I didn't feel the self-imposed guilt of not doing enough physical therapy homework. I would kill for a day where I simply just tube fed her and didn't try oral feeds. But I think that's just part of my personality and the position that I am in. I know that Sweet B needs to do her homework and be given the opportunity to eat orally three times a day, because that is what is best for her. I think the trick of it is finding a good balance for all of us...Where I'm not burned out, yet she is getting everything that she needs.

So I guess you could say that I'm having a pity-party today. Wanna come to my party?!

Tonight I found myself on my computer, reading a post from a woman who was afraid because her baby was just diagnosed with placental insufficiency, before 20 weeks. She asked for a word of hope, and did not get many replies at first. When she finally did, it was apparent that people had not replied because there was not much hope to give.

I read story after story about babies who had IUGR (intra-uterine growth restriction- which is what Sweet B had). Their stories were not nearly as bad as Sweet B's. But these babies had died in the womb. Many of these babies were measuring two or three weeks behind and still passed. Sweet B was measuring 8 weeks behind when she was born. That is amazing. In all of the research I have done, I have only found one other baby measuring as behind as her who lived. Many of these babies were not taken out at the perfect time, like Sweet B was. B was allowed to stay in the womb in order to mature her lungs as much as possible, but taken out as soon as her placental diastolic flow reversed, which is deadly.

Sweet B also had symmetrical IUGR which is the bad kind. In asymmetrical IUGR, the head and the chest stay relatively normal sized as all of the nutrients are directed there. For Sweet B, her entire body was tiny. I remember being told this time and time again and feeling like I wanted to crawl under a rock.

On the other hand, there were women who replied saying that their babies had severe IUGR, and were delivered at 37 weeks and 4.5 pounds. They had been terrified of the 2 day NICU stay (and there is nothing wrong with this. It is scary even if it was only 2 days). But the point is that their growth was restricted and severely so, but it was nothing as dramatic as Sweet B, and this gives me yet another reason to be in awe of the miracle that happened.

I don't often think about the miracle because it scares me to think how close she came to dying. But I need to think about it from time to time, in order to give me the fuel to keep on keeping on.

So here's to hoping that I will get my second wind soon. Come on Sweet B, give this mama a break!

And maybe this will happen...

A Day in the Life of My Little Tubie

noreply@blogger.com (Sweet B's Mom) — Sat, 11 Feb 2012 02:30:00 +0000

Staying at home with Sweet B has certainly not been what I expected it to be. In my days of teaching, I always daydreamed of being a stay-at-home mom. Play dates, trips to Gym.boree music class, and "Mommy and Me Yoga" would be how I would spend my day. This isn't how it turned out, and instead we spend our days going to various therapies and doctor's appointments, but I wouldn't change a thing. Every day I get to bear witness to the greatest miracle that I have ever seen, and that miracle is the life of my beautiful daughter. When I see her pulling herself up, I realize that the hours and hours of physical therapy done at home and at the center are paying off. Right now I'm watching her scoot to try to play with the TV and stereo buttons. I will have to go and get her before she gets there. She will cry and throw a mini tantrum but this will only show how tenacious she is. Just like she's been since the beginning. How lucky am I that I get to see this daily??? Every day we marvel over just how miraculous she is, and I believe that this is a special gift given to the parents of children with special needs.

In the midst of all of this marveling, there are the daily nitty-gritty things that must be done. I'm going to try to show you an average day here at Sweet B's home.

7:30-We unhook Sweet B from her nighttime feeding pump. She plays. I change her into her day clothes and give her her reflux medication. We either go to physical therapy, have occupational/feeding therapy come to us, or her teacher comes.

10:30-Morning feed. I get her tubing and formula ready as well as the food that I will attempt to feed her. I begin the meal with oral stim.ulation by brushing her teeth or something. I attempt to get her to eat and drink. I fail miserably as she refuses to swallow or spits the food out of her mouth while laughing. I continue to try for 5-15 minutes. Finally I give up in frustration as she just won't swallow. I begin her tube feed. During the feed I pray that she will swallow what she has pocketed under her tongue, without gagging and throwing up her tube feed. I bolus feed her 2-4 ounces depending on how badly her reflux is affecting her. I vent her periodically in hopes that it will help her not to puke. She has periods where she will throw up every feed, and I have to measure what she threw up, and give it back to her (new formula of course!). After her feed I race to get her to her walker/turny play thing so that she stays upright while digesting her food. She stays in this thing for 15 minutes, at which point I take her out, take off her bib, and let her play.

11:30-Therapy either at the center or I do therapy myself with her at home. I might do another 2 ounce tube feed if she threw up a lot during the first feed.

1:00-nap time. This takes 20-45 minutes to get her down. Before I had her, I wondered if I would be a "cry it out" mom or an attachment parenting mom, where I hold her until she is asleep. I never had to make the decision because it was made for me. I kiss her, cuddle her, and lay with her on top of me until she is asleep. If I don't, she screams bloody murder and throws up all over herself, negating the feeds that I've given her. It's painful for her and it's stressful to have to get the food back into her. We tried it a few weeks ago and after ten minutes we realized that it was not worth it. So I enjoy the time with her and breathe her in. I love this time and I won't have it much longer.

3:00-B's up! Another oral feed attempt at which I fail, and a tube feed!

4:00-Therapy, play, read books. Whatever we do generally has some purpose to help her feeding or fine motor skills or gross motor skills.

5:30-Dinner for hubby and I. I've been cooking a lot. This is big for me since the kitchen used to scare me. We give reflux medicine to B.

6:30-Another oral feed attempt at which I fail. I tube feed her 2-4 ounces.

7:30-Often she gets her bath where she plays for about 30 minutes while I watch her and shoot video of her being silly and send it to my mom and dad. I read her books or we cuddle on the couch. I do more physical therapy with her.

8:00-Another tube feed but no oral feed attempt this time. We brush her teeth or put something in her mouth so that she associates a full stomach with something in her mouth.

8:30-Bed time. I put her down and it takes approximately 20-45 minutes again. More snuggles and kisses.

9:45-Hubby makes her formula for her nighttime feed. He quietly goes into the room and hooks her up to her feeding pump. He sets the rate of feed depending on her reflux that day. Tonight he will set it at 42 mils an hour. (30 mils is an ounce).

12:00-Hubby is a night owl. He puts more formula in her feeding bag and goes to sleep. Our sleeping arrangement is different. He sleeps in the bed with her while she is in a reflux recliner contraption. I used to sleep with her but I wasn't able to sleep. The pump is a bit scary to me and I am constantly checking on her. So after trial and error, we realized that him sleeping with her is the best arrangement. (Odd, I know. But you do what you have to do, and I have to be awake the next day in order to care for her.) During the night he might have to lower her rate of feeding if she is coughing and having reflux. He also might have to raise her recliner up.

7:30-Sweet B wakes up and hubby drinks a 5 hour energy drink as well as coffee. Our day starts again.

There are a few things that you must know:

*The timing of Sweet B's feeding is very important. I am constantly on the watch for reflux and throwing up. When we are lucky we can get by with 3-4 tube feedings a day and the pump at night. When we aren't lucky or when she's sick or teething (which is a lot of the time) I have to do 5-6 tube feeds a day and the pump at night.

*There are many times when I have to feed her in the car or other places. This is a real pain and I would love to just be able to give her a sippy cup and tell her to feed herself. The public feeds are the hardest because setting everything up is a real pain.

*Leaving the house to go to her therapies, doctor's appointments, or simply shopping requires that I always pack her tube feeding extensions, bottles of formula, water, g-tube pads, multiple bibs, and all of the other normal baby items that moms bring. I have been stuck somewhere without her tubing, and it's not a good thing. One time I considered using a straw. (It wouldn't have worked :)

*I must continue to try oral feeds at least 3 times a day or I risk her becoming even more orally averse. Of course every time I orally feed her I pray that *this* is the time that she will eat. It never happens, but there's always hope!

*My husband is the best husband in the world. Seriously. How did I get so lucky? I've been married to this man for almost fifteen years. We spent most of our marriage without a child, by choice, as I wasn't ready for one until a few years ago. We've had time to settle into our routine, and I had always wondered how a baby would impact him. Well, I have my answer now, and this little girl has him wrapped around her little finger. He turns to mush with her. I cannot imagine having a tube fed child with all of these appointments, without having a partner to help. There are single women who do this every day, and they definitely have my utmost respect. My husband listens to my needs and will do the oral feeds for the day if I simply cannot take it. He makes me leave the house when he sees that I need distraction. He feeds her dinners when I need him to. We know that it is important that each of us get breaks. He plays tennis several times during the week and weekend which allows him to get out and participate in his favorite activity. When one of us is tired, the other one picks up the slack.

Well, there's a glimpse into our daily life. It's certainly not glamorous, but I love every second that I get to spend with her at home.

It is my belief that in a few years the therapies will be over and she will be eating orally, and I will miss the days of spending my time with this precious little soul. She will be off with her friends or at her ballet classes and I will miss the times when I held her on the couch and kissed her as I tube fed her.

Feeding Tube Awareness Week: Why Awareness?

noreply@blogger.com (Sweet B's Mom) — Wed, 08 Feb 2012 06:59:00 +0000

Today I'm supposed to write about why it is important that there is tube-feeding awareness. It's something that I've thought about all day, and yet I can't come up with tons of answers. Your being aware of tube-feeding is not something that is going to affect Sweet B right now. The girl spits food out of her mouth in public while laughing hysterically and thinks that her farts are the funniest thing in the world. I don't think she gives a crap about what you think of her eating from a tube.

I went through a stage where I was embarrassed of the tube. The main reason was that I didn't want to offend anyone by feeding her in public. I didn't want to gross anyone out. This is why I didn't choose to start feeding her in public until recently. Fortunately I've completely lost any fear of offending anyone and I am not the slightest bit embarrassed anymore. In fact, I'm proud. My husband and I always joke whenever we start tube feeding her in public and we say, "It's time to give everyone an education!" So you could say that in a sense, I have become more aware of the needs of tube-fed children, such as the fact that they need to eat to live, and it's crazy to not give them nourishment simply because you're in a public place.

Before I give you the most compelling reason to be aware of tube-feeding, I will give you the selfish one.

I need babysitters. Hubby and I have not spent more than an hour alone since she was born, and that has only happened twice. Sweet B doesn't qualify for a respite nurse since her conditions are not severe. A few years ago they took away the funding to help parents like us get a much needed respite. We've managed to work through this well. My husband plays tennis a few times a week, and although I don't have a hobby right now, he encourages me to get out of the house. Truth be told, I don't really leave much, and I spend the time that he is watching her, sleeping in my bed. I'm tired. Her numerous therapy and doctor's appointments are exhausting, as is the tube-feeding and oral feeding and physical therapy that I must do on my own. I know that it sounds pathetic, but it is the truth. I would love to go out to dinner with my husband. What I wouldn't give to be able to call a babysitter.

I don't think much about the lack of dates though. I'm confident in our marriage and we will survive even without time alone. I do think about what would happen if myself or my husband was in in accident. I worry about being with him at the hospital and having to go home because no one knows how to feed Sweet B. I worry about both of us dying and Sweet B having to go into a foster care situation initially because no one knows how to do something as simple as feeding her. Lately this has been on my mind a lot, and I hate it.

I worry about what I will do when I have another baby and am at the hospital after it is born. I envision my husband not being able to stay with me because he has to go home and feed her. I spent quite some time thinking about this this weekend, and I felt anger. Anger about not being able to spend time in the hospital room with Sweet B, my husband, and myself, a year and a half ago, and anger about not being able to spend time in the hospital room as a family with the new baby.

I've decided that I'm going to put this out there for people who know me to see, and I'm hoping that we will get some willing volunteers to relieve my anxiety on these issues. My mom learned to tube-feed this weekend, even though it scared her half to death, and I have had a few friends on face.book volunteer to learn (I only wish that more than one of them lived close to us!)

I think that people might not have volunteered because they weren't aware of how scary/frustrating it is to have no one know how to feed Sweet B. I think that some haven't volunteered out of fear of the whole tube-feeding thing. Sticking a tube into a hole in the stomach? Gross, right? And of course I haven't put it out there that I need help. I don't want to put people out. But just as I'm done worrying about what people think when I tube-feed her in public, I'm done pretending that it's okay that no one close to us knows how to feed my baby. There are real and compelling reasons for people who care about Sweet B to learn how to feed her.

But seriously though...look at that face. Feeding her through a hole in her stomach may seem gross, but it's keeping her alive. I would think people should be banging down our door, begging to babysit!

Educating people about tube-feeding hopefully will show others that one of the challenges that we face is childcare. Teaching people how to tube-feed will alleviate some of the worry that comes with childcare situations.

Did you know that many children who are tube-fed might be fed that way when they are adults? I believe that we have a few years at the most to deal with this, but some people will live the rest of their lives making sure that their son/daughter is getting adequate nutrition through their tube.

And now I'll take the focus off of our own family and talk about why tube-feeding awareness is important to society as a whole.

I think that we get so wrapped up in our own lives that we often don't take the time to find out what people are living with daily. A lot of the time it is fear. If we think about it, then we imagine it happening to us, and it is scary. My mind tends to focus on the worst case scenario. When I learn of a disease or a difficult life situation, it is often too scary to even think about it. It is natural for people to silently think "I'm so glad that isn't happening to me."

But it could. Your child could be in a car accident and have to depend on the tube for the rest of their lives. This doesn't just apply to tube-feeding of course. Any of us could find ourselves with cancer or a deadly disease. Any of us could find ourselves being discriminated against or suffering a depressive episode which completely takes us out of commission. Thank goodness we have "awareness" weeks that teach us about cancers and diseases and discrimination and mental illness. Awareness, if we choose to learn about the topic, take us out of our own world and helps us to see that the people around us are living life with frightening or difficult circumstances. We need to take the time to learn about the life conditions that people live with so that we can be a better support and not be so judgemental. The woman in the waiting room who is letting her toddler scream uncontrollably might be doing so because the child has autism, and ignoring certain behaviors are part of their therapy. The teenager at the store who keeps yelling the same word over and over, getting on your nerves, could have Tourette's Syndrome. The bank teller who is rude to you could have just found out that she has breast cancer.

If you made it to the bottom of this post, thank you for taking the time to learn about something that is probably foreign to you. Thank you for opening your heart and your mind and being aware that tube-feeding has it's challenges, as does every difficult life situation. Being aware of this helps us to become better people and help those around us to make it through this difficult life.

Feeding Tube Awareness Week: Why Sweet B Needs a Tube

noreply@blogger.com (Sweet B's Mom) — Tue, 07 Feb 2012 05:43:00 +0000

"Sweet B is truly a soul that has lived a thousand lives in her short time here on earth. She is stronger than I could could dream of being, and her beauty resonates from the inside out. The reason that people look at her is because her soul speaks to all she meets. They do not see a tube, to me it is like a veteran coming back from battle, this is just a part of it. It is really a sign of her strength, her journey. You should never feel the need to hide, it is like Sweet B's purple heart."

This quote was taken from Sweet B's teacher, during a period when I was concerned about what people thought when they saw Sweet B being tube fed. She also happens to get a lot of attention from people when we are out in public, even when she's not tube-feeding. It is probably her big pink glasses, but it could also be her beautiful face, or as her teacher says, her soul.

It is Feeding Tube Awareness Week. If you would have told me two years ago that I would have a tube-fed baby, I would have just died. Everyone who knows me well knows of the anxiety that I battle, and add in the micro preemie with a hole in the middle of her tummy, and you would think it would be a recipe for a total freak out for me.

But I've surprised myself, almost as much as Sweet B has surprised everyone, because I'm now a tube toting, syringe using, feeding pump pushing, proud tubie mom.

Sweet B's journey to her g-tube is a long one. If you'd like every gory detail, then read this post in which I describe it in gut-wrenching detail. If you don't have a spare three hours, then I'll briefly tell you why right here.

Sweet B was a micro preemie who spent the first six weeks of her life eating from an NG tube, which is a tube through her nose.

She eventually fed through a bottle and even teased me by making me think that she just might breast feed someday. (I pumped exclusively for five months which gave her enough frozen milk to last her until nine months. I tried to breastfeed daily for five months.) She was always a slow feeder and her feeds would last from 30-40 minutes. Pair that with the 40 ounces that I pumped daily (I was a cow, literally) and that is a formula for complete exhaustion.

These are freezer gallon bags.

This sounds like it has nothing to do with her but it does, and I will tie it in very soon.

She began throwing up a lot during and after feeds. She was put on reflux medication. Over a period of several months, her suck became worse. She would only eat while she was sleeping, which means that her suck was a reflex and it wasn't something that she really knew how to do well. Her feeds became longer and longer and she started completely refusing the bottle, until she was taking in a total of six-fourteen ounces a day. She needed a minimum of 24 ounces. We had three hospital stays because of her failure to thrive. She was eventually put on an NG tube again (the darn nose tube) which contributed to her oral aversion.

Her reflux had gotten so bad and so painful that it caused her to stop eating. I know that it sounds unreal and like she could be on some "You Won't Believe How Weird This Is" reality show, but it's true and it happens.

I made one of the most difficult decisions of my life when I called her surgeon and begged him to place a more permanent g-tube. Hubby and I had had enough of shoving the tube down her nose every time she pulled it out, and her eating was only getting worse. She was taking a total of six-eleven ounces a day orally at this point, and during her hospital visit her urinalysis showed that she was in keytosis from dehydration. This is what your body goes into when you starve yourself with the At.kins diet. Her development was showing delays because she spent all day having a bottle shoved down her throat. There was no time for rolling on the floor or doing lots of tummy time. My hubby and I were a mess. Now, the decision to place the tube had nothing to do with my husband and I. We would have endured this for years if it was in Sweet B's best interest. But it wasn't.

And she was starving.

And showing delays.

And not growing.

And would die if she continued eating this small amount of food.

And sometimes you've gotta make scary decisions.

This is right after the tube was surgically placed.

You could say that it was my choice to put the tube in her, but was it really? What kind of parent would I be if I sat by and watched her grow sicker simply because I didn't want to do an "uncomfortable" thing like surgically place a hole and a tube in my baby's belly?

A feeding tube itself wasn't a choice...She needed one to live, but the doctors suggested keeping her on the nasal tube for however long it took her to eat orally. It is non-surgical and can be pulled out in a second. However, with the nasal tube she became even more orally adverse and it aggravated her reflux by keeping her throat open. Not to mention that she would pull it out constantly and we would have to stick it back in, making sure it was placed appropriately in her belly and not her lungs. I also knew that she would need a tube for a long time. The surgically placed tube was a better option in so many ways. And when she's done with it? It simply gets pulled out in a doctor's office and closes within a few hours (in most cases).

Now is when I bring in the pumping/breastfeeding thing, to demonstrate just how much I tried. I tried the hardest that I could to give her the best nutrition possible. I was willing to spend hours upon hours trying to bottle and breastfeed her and then pump six times a day on top of that. Would someone who spent hours doing these things place a tube in their baby simply because they didn't feel like trying anymore? No. Would someone with a degree in Child Development and a teacher of ten years not know how to feed their baby? No. It's pretty darn easy to feed a baby.

Sweet B doesn't have a tube because she's a picky eater or takes too long to feed. She doesn't have a tube because we didn't try sweetening her milk or using a different nip.ple. She doesn't have a tube because we put too much pressure on her to eat or because I freaked out. Believe me, no surgeon would place a tube for any of these reasons.

She has a tube because she stopped eating due to reflux, and that's that.

Sweet B would have died if she didn't have the tube placed. This tube has saved her life. It's not easy to be a tubie mom. It's not easy to constantly keep track of the ounces that she has been fed, and it's not easy to break out the equipment four-five times a day and every night, but it is what she needs to live, and we're more than glad to do it for her.

As her teacher said, I do believe that her tube is her badge of honor.

I thank God for her tube. The tube scares some people and demands hours and hours of my attention, but this tube gives her life.

When life gives you lemons, make lemonade :)

Happy Tube Feeding Awareness Week. I have so much more to share about this tubie life, and I plan on posting daily, so please check back!

I'm Quiet

noreply@blogger.com (Sweet B's Mom) — Fri, 16 Dec 2011 08:52:00 +0000

I wanted to do a quick post to let you know that we are all doing well! We had a big celebration a few days ago when Sweet B put weight on her feet and stood (with our help) and leaned on a play table. This is a huge deal but I just don't have the energy to explain why right now. Maybe it's because Sweet B has decided that naps are for babies and she's just not a baby anymore. Oh, and going to sleep at night is for babies too. Tonight she treated us to loud screams when I left her bedroom, which caused her to puke, which caused me to have to change her shirt, which caused her to smile really, really big because she got out of sleeping!

We are switching her medical care, and that is consuming a lot of our time now. I've learned that being the parent of a child of special needs means that there is an awful lot of advocating that you have to do. So we've spent the last week begging to have her medications covered, meeting her new doctor, scheduling appointments with her new GI doctor, and working with the pharmacy to send us her feeding tube extensions, pump, and supplies. I've been meeting with different people trying to get her formula covered. So far we have not been successful in getting her formula or medications covered, and we are trying our hardest to do so. Sweet B's new doctor is clearly going to be an advocate for us.

Today we agreed to allow her new doctor to formally diagnose her with cerebral palsy. It was hard for me and it made me sad. However, after about three minutes of self-pity and pride, I decided that this is what is best for her. She deserves all of the services that she can get. She deserves more physical therapy and feeding therapy, as well as all of her medications and formulas covered. I was reminded today that it is just a diagnosis. It does not change who she is and what she is capable of. She may or may not have it, but it really doesn't matter. What matters is that she gets the things that she needs. I'm not going to be the parent who doesn't get all of the services for their child, just because of pride and not wanting their child to be labeled. As a teacher, I've seen this, and it's not good.

Still, it's hard for me to stomach. But please...After all I have stomached this should be very small on my list of concerns.

Anyway, we are having a lovely December and every day Sweet B becomes more toddler-like. She is such a happy little girl!

I have a few blog posts that I've actually already written, but I struggle with publishing it because my blog is public. I struggle with how much to share about our lives. I do eventually want to write a book about our experience, and I suppose that more will be exposed then, but for now, I have to be somewhat protective of what I write. The important things are that my husband and I are very much in love and we love our little family. We've spent almost fifteen years of marriage (OMG!) building a strong foundation, and even though raising a child like Sweet B has its challenges, as does growing our small business, we are strong.

We're good. Sweet B is a perfect angel and progressing so much! Her new physical therapist sees her walking by holding our hands, by June at the latest. Isn't that fantastic??!!!

I hope that your holiday season has been lovely!

What's New In B-Dogs World

noreply@blogger.com (Sweet B's Mom) — Tue, 06 Dec 2011 07:39:00 +0000

I wanted to update you on the latest with our Sweet B.

She got her first haircut a few days ago. I felt like I was sneaking it. After all, it was against my moms's orders to "not cut off her curls!" But I'm telling you, she looked like Grandpa Munster. Or a Hasidic Jew. The sides of her hair were growing and curling and the back was pretty stagnant. I felt like I was a teenager again and doing something very naughty, which made this even more fun! (sorry Mom, but it's the truth :) So we evened it up into a little bowl cut, and she looks absolutely darling. A few moms asked me if I was scared to do it...Ummm....NO WAY! After what I've been through, a haircut is a walk in the park!

A few weeks ago we participated in a walk to raise money for families of babies in the NICU. Sweet B got her own poster which told her story, and it was placed along the path of the walk, so that people could see just how amazing she is. My dad came with us and taught her a song that he used to sing to me when I was a baby, called "Que Linda Manitos" where you wave your hands back and forth.

He's in love with her. Can you tell? His grandbabies are his world.

We also walked with our dear friends whom we met in the NICU. Do you know how good it feels to talk with someone who just knows what you have been through? When she takes out the tube to feed her daughter, I immediately feel like I am in the presence of someone who just knows. She knows what it feels like to try so desperately to be able to feed your child like "normal" people do. And she knows that you've just gotta accept it, smile, and thank God that your baby is here to be fed through a tube.

Sweet B's daddy is a Sweet B hog. I'm telling you that he is constantly hugging and kissing her, and we fight over who gets to hold her! Often we'll hear her wake up from her nap and we'll run to the room, pushing each other out of the way to be the one to get to her first. He usually wins. Jerk.

This baby is becoming a toddler. She's doing the cutest things, from waving at everyone, to the not so cute things, such as pulling her feeding tube out right in the middle of a feed, just to hear me gasp.

I've got lots more to tell you about, such as her current eating situation, and her stubborn refusal to go on her belly. I've still gotta tell you about her trip to Disneyland and my tale of the three necklaces, but those things will just have to wait. I'm tired and I have to get a good night of sleep. This "HMB" (high maintenance baby) requires all of my energy!

*Note: Do all moms and dads sit around talking about just how beautiful/cute/perfect/amazing/should be in commercials...their baby is? Because that's what we do. Like. Every. Day.

Sweet B's Room Makeover

noreply@blogger.com (Sweet B's Mom) — Tue, 29 Nov 2011 06:57:00 +0000

Sweet B had a room makeover this September. It was surreal. We've never before been the recipients of anything out of the ordinary, so when Sweet B's teacher told us that she had nominated her for a room makeover, I felt touched but truly thought that she was grasping at straws. A makeover? That kind of thing doesn't happen to us! When Rachel of Cecily's Closet called me to tell me that Sweet B had been chosen out of many other children, I was in disbelief.

Cecily's Closet is run by Rachel, and she started the group in honor of her daughter Cecily, who has special needs (and it stunningly gorgeous-looks like a model). She wanted to do something kind for children who had had a hard time. She could have raised money to give to these families, but she really felt that making over the bedroom of a child would bring such happiness to them and their parents. And it's so true...sitting in Sweet B's new room does bring me such joy. Sweet B might not notice it yet, but she will, and I notice it, which does affect her.

The experience was one of the coolest things I have ever experienced. When all of the people left and the work was done, we wondered why they had chosen us. There are certainly other children out there who are experiencing much more difficult medical problems than Sweet B. There are certainly other parents who are kinder than us. But when good things happen for us, we often question it. Anyway, I decided to ask Rachel of Cecily's Closet why she chose us.

She said that she was touched by Sweet B's story, and the fact that the doctor's were wrong really made an impact on her. All too often the opinion's of doctors are taken as gospel, and let's face it, they don't know everything. They give their job their all and they save lives and I truly believe that most of them are very, very good people, but they do not have a crystal ball and cannot see the future. They gave us their opinion on Sweet B's fate based on what they had seen before. They told me to prepare for her death and didn't even have hope for her until the week before she was born. The fact that she is here and thriving gives all of us hope for any situation that seems impossible. In her exact words "When we heard the story of Sweet B and her message of hope we knew we had to do this room to honor her spirit and journey."

Rachel asked me what I would like for her room. I felt awkward because this wonderfully kind lady is asking what I want for B's room, and I've never experienced anything like this before! I told her that I wanted something that we could take with us when we leave, as we are in a rental right now. I wanted paintings on canvas so that we could keep them. We already had the dressers that we had purchased and the crib from my dad, so we didn't need furniture. I told her that we needed help with organization and a bookcase for all of Sweet B's books. I told her that I wanted the design to grow with her, and if B is as sentimental as I am, she will really want to keep these things in her room for a long, long time. (I have old ballet paintings I got when I was 10, and they are hanging on the wall right by my bed).

She asked me about the theme and I immediately knew what I wanted. I wanted it to be rainbow themed. Sweet B was my "rainbow baby" which is a baby after a loss. Plus, she was a bright light and wondrous and beautiful just like a rainbow. I had tried mostly unsuccessfully to incorporate the rainbow thing into her room, but it just didn't have that "wow" factor. The only thing that absolutely had to stay on the wall was three paintings that my mom had painted for Sweet B. I asked Rachel to incorporate these paintings into her design because they were extremely special to me.

I didn't plan her original room until late in my pregnancy, not even daring to buy a single thing. I dreamt of the white crib that I wanted for her and I had somewhat of a picture in my mind of what I wanted it to look like, but it never came to fruition. When Sweet B was in the NICU and we would do kangaroo care, I would whisper in her ear and tell her about the "rainbows and fairies" that I was putting in her room. I would repeat "rainbows and fairies" over and over again to her every day so that she would know that she had a very special place waiting just for her at home.

I had lofty plans to make her a perfect room during her NICU time, but worrying about my one pound baby and pumping every three hours took precedence over the rainbow room. Sure, it was decent looking, but just not "Wow!"

Many people showed up that morning, including an artist named Emily Dolton and a boys' volunteer group. My heart was touched when I learned that each boy had brought a book for Sweet B. There were about thirteen of them, as well as many adults. We stayed out of the way in the family room while the boys and the adults worked in the room and painted in the garage. The boys interviewed us and then the time came for us to see "the big reveal." It was much prettier than I could have ever dreamed. The room surpassed my wildest expectations. It was so bright and well planned. The attention to detail was just amazing, from the stripes and circles on the curtains to the circles on the lampshade and the hanging canopy. The paintings, drawn by the artist and painted by the boys, were the star of the room, and there is just something about their simplicity that makes them such beautiful works of art.

One of the paintings particularly tugged on my heartstrings.

Ain't it the truth?! I love the way that Emily was so respectful of my mom's work, and used the same colors and even writing that my mom had used.

Another of the paintings really got to me, and it was this one.

My husband used to call me "Little Lady" when we were dating. Okay, he did call all of the women in his college youth group that name, but clearly I turned out to be the real "Little Lady!" (Yes, I do realize that "Little Lady" in this case stands for Sweet B, because, well, she is little.)

Rachel chose to use ladybugs in the design because I had some ladybug stickers stuck on the mirror, which my aunt had bought me. Do you know that ladybugs symbolize hope?

The room is just beautiful. The same flowers and circles were sewn on the curtains, lamp, and pillows. The drawer knobs were perfectly colored flowers. The crib bedding (which is currently in another room where she sleeps with her daddy-long story due to the fact that I can't sleep with her or I don't sleep because I'm checking her breathing the whole time AND I have to be coherent enough to watch her the next day while hubby works) is stunning, with gingham and ladybugs. I can't wait until we can move it into her room. But even without the crib...it is perfectly perfect.

At the end of the day, as we looked around her room and just took all of it in, we realized that this makeover wasn't for us. It made no difference whether or not we deserved it or were good enough people. It was for Sweet B, and she most definitely deserved it. It was in honor of her journey and her bravery and the fight that she carries within her. It was for her to wake up to every morning for years to come to remind her that she is strong and she is a survivor.

Every day since the makeover we have played in her room. We sit in front of the closet mirrors and laugh and dance and read and play with her toys. And I look around her room every single time and think about how incredibly fortunate we were to get such a gift.

Thank you Rachel and everyone at Cecily's Closet for giving us such an incredible gift. Thank you Emily for your beautiful paintings, and for honoring my mother through them. Thank you to the volunteer group who came and spend their time painting and cleaning and moving things for a little baby, and for the books that you brought. Thank you to the adults who came and organized and ironed and moved things and spent an entire day devoted to making a very special room for our very special girl.

We will always remember it, and I can't wait to show this to Sweet B when she is older, and tell her all about the many people who cared enough about her to give her a room makeover.

World Prematurity Day

noreply@blogger.com (Sweet B's Mom) — Thu, 17 Nov 2011 19:14:00 +0000

*I am not a medical expert, even though this post mentions many medical things, and there might be mistakes. I am the mother of a premature baby and this is the knowledge that I have gained through living my life for the last two years.

Today is World Prematurity Day. It is about letting people know the effects of prematurity. I think this blog is a testament to it. Prematurity is not simply having a baby early and putting them in an "incubator" for a few months to grow. Yes, that happens, but living outside of the womb when they should be inside, comfy and warm, causes a host of problems, that are often times not easily overcome. To name a few that we deal with: feeding issues, gross motor development issues, sensory issues, GIRD, fine motor development issues, possible neurological issues affecting gross motor development, PFO, PDA...And I am sure that there are more that we aren't aware of yet. But there are so many other issues that we haven't had to deal with, at least yet: respiratory issues, ADD, ADHD, ROP, poor immune system, obesity (yes, preemies are prone to obesity), NEC...

*If you don't know these acronyms, be thankful.

If as a parent, you've had to deal with long-term issues stemming from being a preemie, you are actually very fortunate. Why is that? Well, if you are dealing with these issues it means that your premature baby survived. Today I have read so many stories over at the March of Dimes page about preemies who didn't make it. My eyes are opened yet again to what could have happened...the unthinkable. I know many, many women who are living their lives after the death of their premature baby/babies. The grief is unfathomable.

Most women have premature babies because their water broke, they went into labor, they had an incompetent cervix, or they had an infection. Many often get pre-eclampsia which could lead to HELP syndrome which could lead to death of both the mother and the infant.

Prenatal visits are so important, in order to make sure that your pregnancy is progressing as it should. It is also important to go to the hospital if you feel that something is wrong: you are cramping, you might be leaking fluid, you are bleeding, if your belly is not growing, or if you feel weak or sick.

Of course, most women do go to the hospital when these things happen, and often times they do still end up with a premature baby. But with more research and time, organizations like the March of Dimes can find ways in which to stop prematurity, so no more infants or their parents would have to feel the effects of it.

I often wonder where Sweet B fits into this prematurity business. I never went into labor or felt a contraction. My amniotic fluid was fine and I didn't have gestational diabetes (even after stuffing my face for months and months in hopes of getting her to grow). I'm actually glad that Sweet B was a preemie and that she had a chance. Years ago, without the ultrasound machine or people trained to find IUGR, I would have never known that she was not growing properly. Without testing the diastolic flow through my umbilical cord, they would never have known that her nutrient supply was about to run dry and that they needed to get her out at the perfect time. Her diastolic flow reversed at 32 weeks-any longer and she would have died. My perinatologist said that you have anywhere from a few days to 13 days in order to get the baby out before they die. Without their knowledge, she would not be here today. Not to mention my complete placenta previa that would have complicated things even more.

Sweet B's story is so different because you hardly ever see babies who are 32 weeks gestation and 1 pound 11 ounces. You never see them because they die in utero. But what if that didn't have to happen?

Did you know that 1 in 8 babies are born prematurely?

Did you know that if a baby is born at 24 weeks, they have about a 50% chance at life? Did you know that some 23 weekers can make it? It is an extreme rarity, but it can happen.

Did you know that there are a whole host of problems that a premature baby in the NICU can face that can be deadly? They thought that Sweet B had NEC, which is where part of the bowels die, and this can cause death. When I heard the word "NEC" it made me ill.

If you stand in the NICU for three minutes you will hear beeping and alarms and see nurses tending to tiny, frail, mouse-like infants, and you will immediately see just how frightening prematurity is.

These images that I have put on this post might be shocking to some, but to me, they make my heart sing. They are reminders of a very tender time in our lives, in which we were given the greatest gift, unlike any gift I will ever receive again.

Now that I have been touched by prematurity, I promise to never be quiet about it, and to keep up the hope that they will find a way to keep babies in longer, no matter if mom has gone into premature labor or if her baby has a case of severe IUGR.

With the modern equipment and knowledge, they were able to save Sweet B. I have high hopes that they will continue to gain more knowledge, so that prematurity is a thing of the past.

LET THEM LOOK

noreply@blogger.com (Sweet B's Mom) — Sat, 12 Nov 2011 07:25:00 +0000

When I was first confronted with the choice of whether or not to give Sweet B a g-tube, I was very afraid. The idea of my baby eating through a hole in her stomach terrified me. When the tube was placed, it was extremely awkward in the beginning and I often wondered if I was ever going to get the hang of it. Well, I did, and I feel like a seasoned pro. (Except for her continuous feeding at night. I have no idea how to hook up the pump and the bag. My husband does it all. Shhh...don't tell anyone :)

At home I feel like I could do a tube-feed with my eyes shut. In public, well...that is a different story. My hands become sweaty and I drop things and constantly look around. I feel like we are in the spotlight.

Why is this, you ask? It's not that I am embarrassed about it. I'm not in the slightest. I don't want to offend anyone with her tube-feeding. I don't want to gross anyone out. I'm afraid that someone is going to come up to me and tell me that I need to do this elsewhere.

You see, I am easily grossed out. If the inside of the restaurant smells like fish, then my food will start to taste like fish, and I don't like fish at all, and then that's the end of my dinner. If an old person with really bad table manners sits at the table next to us and eats, I generally find a way to switch chairs with my husband so that he only has to see the old person with bad table manners eat. If I am in a movie theater and the person behind me is eating popcorn, all that I can hear is the crunch...crunch...crunch...and next thing you know I am embarrassing my husband by having us find new seats.

Yes, I am weird. And now you are probably afraid to eat around me for fear that I will be grossed out for some reason. Please don't.

Because I am easily grossed out, I assume that everyone else is. I assume that people will be angry that they are dropping twenty bucks on a meal that I am about to ruin.

We used to not tube-feed Sweet B in public at all. Then we took baby steps and started feeding her at the beach. We would still whip out a towel though and cover her up and look around hoping that no one would see what we were doing.

I must add that we do feed her orally in public, but she only eats a pinch here and a pinch there, so it really is only for the practice and not for nourishment.

I guess I'm stating the obvious here, but she's not so fond of oral eating. Even her oral eating is not a pretty sight.

At Disneyland a few weeks ago we went to the corner of a restaurant, put a blanket over her stroller, and tube-fed her that way. We also would pull off to the side of the park and try to find remote places to feed her. It was not always easy, particularly because if we feed her too fast it will come right back up.

This is what happens every time we go out in public: We first have to scope out a place to feed her that will be private enough. Then we go to the place, scrub antibacterial soap on our hands, hurriedly try to get the formula ready as well as her extensions, put her in her stroller, cover her up, and quickly give her her feed, as we look around trying to find out if anyone has caught on to what we are doing. Then we pray that it is not a barf-o-rama because we fed her to quickly.

Last week we went to share a dinner at the pier. It was a cold night and we were excited to be out. We walked into the restaurant and were hoping to get a corner table so that we could tube-feed her discreetly while her stroller was covered up. We didn't get a corner table so hubby took Sweet B outside in the wind and tube-fed her. Our dinner arrived early so I sat there and ate my half. Alone. I texted friends while I ate. I listened to the little boys at the next table laugh with their parents. I even watched one of the boys gag and spit some food out. I felt very lonely and angry. As I was eating hubby came up to the window by my table and looked through it, and I felt such sadness. Finally hubby brought Sweet B in and we put her in her high chair and let her play with stickers. Hubby finished his half.

All three of us had eaten at different times, yet we had paid for our meal and taken the time to get dressed and do all of the things that have to happen in order to get a toddler out for the night. Yet, none of us ate together or enjoyed our meal. How is that right?

That night left a deep impression on me, and something inside of me just clicked, and I decided that I wasn't going to let that happen anymore.

Last night we went to the mall. Hubby dropped us off while he went and did an errand, and I had to find a spot to feed Sweet B. I looked around for somewhere discreet, and then I thought, "To hell with this" and sat in an eating area. I texted my friend, and told her what I was about to do, and she said, "Let them look." So I did.

A few people walked by and looked, and I smiled, and they smiled back. Two teenagers came up with their Star.bucks and sat at the table next to ours. I thought, "This is it. They will roll their eyes and get grossed out." But they didn't. Sweet B waved at them and they waved at her and giggled when Sweet B smiled at them and played shy. They loved her. They probably wondered what in the world was wrong with her. Did she have cancer? Was she ill? But they were kind. And that is when I told myself that I was never again going to cover up how I feed my child.

This is how she eats.

She is beautiful and strong and eats through a hole in her stomach because severe reflux caused her to stop eating.

If anyone says anything, I still don't know what I will say, and it will make me angry. I might cry. But we can't eat separately anymore. If anyone is offended by it, then they should thank their lucky stars that their kid eats through their mouth. They can turn away. They don't have to watch.

Whenever I feed Sweet B around a person who hasn't seen it before, I always ask if they will be offended if I do it. I am SO NOT going to ask that question ever again. If they are offended, then they can kiss my a**.

This is how she eats.

I took this picture last week.

There is something about it that I just love. I think it shows her beauty and the fight that she has within her. It shows the beauty of her journey. Does that make any sense to you? I don't know a better way to describe it.

She is so beautiful. She captivates people and I can't count the number of times people have stopped us and told us just how beautiful she is. This happens on every trip out into public, multiple times. I think the pink glasses that she normally wears, initially gets her the attention.

And then they look into her eyes and can somehow see that she has a fighter's soul. I often want to giddily say, "Yes, she is beautiful and you don't even know her whole story!!! She was born at a pound and eleven ounces and she has a feeding tube in her tummy and I was told in my fifth month of pregnancy that she would surely die and she didn't and she has got the most beautiful spirit!" I never say that but I really, really want to.

So, in the words of my new friend...I will LET THEM LOOK. I will smile and most of them will smile back and she might just teach them a few lessons about life and the beauty of diversity.

I adore my little tubie.

I'm an Advocate!

noreply@blogger.com (Sweet B's Mom) — Mon, 07 Nov 2011 07:07:00 +0000

A few days ago I received an invitation from my local mom's group to attend story time at the local library. The different story times were divided into babies/prewalkers, walkers/to three, and three/to five.

When I read this my blood started boiling. I think that most people would look at this and wonder what I was so angry about.

It was the "walking" part. Children should not be put into groups based on their walking skills. Take the four year-old with cerebral palsy who is in a wheelchair and can't walk. Should he be put into the baby/prewalkers group?

Now, I know what you are going to say, because it was said to me twice. "Oh, I'm sure you could bring Sweet B to whatever group you wanted to."

Right.

But that's not the point.

It's the word "walking" that is hurtful to the child who isn't walking and to the parent who has to try to figure out where to put their child. Every day these parents encounter countless things that demonstrate just how different their child is. Why turn an innocent thing like library story time into just another way to hurt parents of children with special needs?

Sweet B is not walking, but she is cognitively on par with the walkers. But even if she wasn't, I should have the right to put her into whatever story time I feel will serve her best. Public education is different, but this is story time.

You might say that the "walkers" part was put in there so that the babies who aren't walking don't get hurt. It doesn't matter. When you give the ages of the groups, such as babies, ages 1-3, and ages 3-5, it is a given that ages 1-3 will be walking and if you take your non-walker in there you will have to sit with them in a chair.

I called the person who is in charge of the entire county and left a message on her voicemail at 11pm one night. The next day, the wording was changed for every library, now stating ages instead of walking ability. My message was kind but to the point. I told her that it hurt me and that I am sure that it hurts others. I let her know that it was a serious problem and the wording needed to be changed ASAP. I didn't say this, but I was fully prepared to bring this to the attention of the ADA.

I called the children's librarian the next day to discuss it with her (before seeing that it had been changed) and I had to leave a message. She never called me back, and the librarian in charge of the county never called me back. While I sincerely appreciate that they changed their wording, I would really have appreciated a return call.

As a side note: I already was not thrilled with the library story time, because a few months ago when I went, the librarian suggested that I take Sweet B to baby story time instead of toddler story time. That way, I could read to her instead of someone else reading to her. But this is what I wanted! I always read to her at home and don't need to drive to the library to do it. I want her to hear a book from someone else and watch the toddlers sing songs and jump up and down. The librarian wasn't in agreement with me though, so I didn't leave with a good taste of story time in my mouth. The librarian doesn't seem to be the most friendly person, so that is perhaps why I didn't receive a call back.

Anyway, the person in charge of my mom's group immediately changed the wording on her invite to the story time, which I was very thankful for.

My mom is actually a librarian, and I called her and asked her if they used the word "walkers" in their story time. She said that they didn't, and was actually quite appalled that our library did.

I taught in public school for ten years. I must admit that I got annoyed when parents pointed out things that I thought were silly. If it didn't seem like a big deal to me, I wanted them to "suck it up" and just deal with it.

But now...I see. I see why a parent was adamant about their child being pushed into the regular classroom, even though they couldn't write. I see why the parents of the student with Down Syndrome wanted their child to participate in the regular classroom during PE. I see why a parent wanted their child to work on his laptop instead of writing anything, because he couldn't write using his hands.

I was always nice to these parents, and was very accommodating. I usually agreed with the parent and wanted their child to have the best experience in the least restrictive environment.

But now...I truly see. I see it with my heart instead of my brain.

As a teacher I knew the right things to do with these parents and children because my brain told me so. But now, as a parent with a special needs child, my heart tells me what needs to be done.

How lucky am I, to be given the opportunity to see something that I've never seen before?

Grammar, Spelling, and Punctuation Apologies

noreply@blogger.com (Sweet B's Mom) — Fri, 28 Oct 2011 06:31:00 +0000

I wanted to issue an apology regarding my embarrassing spelling and verbiage errors in yesterday's post.

Today I read in horror as I noticed the words I had written on the bottom of yesterday's post. Apparently "Just breath" is the new way to spell "breathe."

My favorite is when I said that something was as hard as "pulling hair" when of course I meant "pulling teeth." But hey, I guess pulling hair can be hard too, right?

My lesson to take away from this is that I should not blog past eleven at night. Clearly. My former students would get a real kick out of my lack of spelling, grammar, and punctuation skills.

Today I went to my first yoga class and let's just say that my entire body hurts. So does my heart and my mind. I know myself, and just contemplating the idea of CP or thinking about the months and months (possibly years) of feeding therapy we have ahead of us has gotten me really down.

I really need a vacation. Or another trip to Disneyland. (We took Sweet B last week, even though it wasn't the most financially responsible thing, but hey, we had a blast!)

On the bright side, and there always is one, today Sweet B ate well (and by well I mean about two tablespoons of food!). She waved at us several times, said "Uh oh" and "dog" and maybe "daddy." She spun beads with her daddy, would wait for him to spin them, and then had her turn again. She walked around in her walker (backwards of course) and grabbed my iphone to play with and mischievously looked at me when she took it away from me. She giggled and giggled when doing push-ups on my chest while refusing to take a nap. She is becoming her own little person and I've got to say, she is turning into a real jokester just like her daddy. Lately her biggest game is pulling out her feeding tube just to hear me scream, and then she smirks at me and belly laughs. I think her and her daddy plot how to best tease me.

I've still go to do posts about a very special necklace given to me a few months ago, her room makeover, and our recent trip to Disneyland. Unfortunately, I had to interrupt those posts for the recent possible news, but I promise to do those soon, okay?

*It's past eleven at night. I promised I wouldn't blog past eleven at night. I already see mistakes. Oh well. I've got more pressing issues to think about.

**Thank you to those of you who read my blog and offer your encouragement. It means the world to me, and frankly, it's what is holding me up right now (you and my little Sweet B and her spunk).

A Possible Diagnosis: Scary

noreply@blogger.com (Sweet B's Mom) — Thu, 27 Oct 2011 08:09:00 +0000

The night before I had Sweet B I laid in my hospital bed, rubbing my stomach, and listened over and over again to the song "When We Dance" by Sting. That song had just been featured on a TV show I had watched and it stuck with me for some reason.

My dad had surprised me and showed up that evening instead of the next morning, for her birth. He and my husband had left to stay at the hotel down the street, and I was left with only me and Sweet B.

The thoughts that ran through my mind were filled with terror and wonder. I rubbed my tummy wondering if that was the last time that I would spend with her while she was alive. I talked to her and told her about how I used to be a dancer and how I hoped that someday she would dance. I told her of the love that I had for her and that we both needed to be brave. At this point the blood flow in her umbilical cord had showed reversed diastolic flow, and we had to get her out ASAP, because this would kill her anytime within the next few days.

Many possibilities ran through my mind regarding the outcome. I thought about her death and about what my doctors had told me. The UCLA specialist had said that she was very likely to have mental retardation from the lack of nutrients getting to her. My OB had said that he had never seen a baby with such short limbs turn out to be "normal." The genetic counselor who called me week after week urging me to terminate had continued to throw around outcomes that included "lethal" in the title. All of the doctors told me that she was very likely to die in utero.

If someone had come to me that night before I had her and said, "She is going to be born tiny. She will eventually need a feeding tube and she will have a mild case of hypotonic Cerebral Palsy," I would have said, "Well, BRING IT ON. Compared to what could have happened to her, this is nothing."

So when we went to the appointment that I always dread with her developmental doctor and she told me that we are probably looking at a mild case of hypotonic Cerebral Palsy, I tried to remember what could have been. I really did. When she told me that she couldn't promise that she'd ever walk, I tried to keep my emotions in check, but I just couldn't keep them inside. I bawled. The social worker got down on the floor with me where I was with Sweet B and the doctor got tears in her eyes. I cried and I cried with reckless abandon.

(Hypotonic Cerebral Palsy is where the child has low tone. Children with the more severe form are very floppy. Sweet B is not floppy. She is very behind in the gross motor department. Cerebral Palsy normally does not affect cognition and it is usually the result of oxygen or nutrient deprivation around the time of birth). The brain does show damage in a patient with Cerebral Palsy, and frankly, I just can't get that out of my mind. Normally, the healthy parts of the brain will take over, but just knowing that part of B's brain might be damaged makes me want to vomit.

Believe me, I know how fortunate and blessed we are to have her here. I know how close she came to death, and I know that there are not any 32 weekers who are 1 pound 11 ounces because they die before they are born. I realize that every time she mimics my "Uh oh's" or waves back at me, I am witnessing a miracle.

But it's still hard.

All of this: The feeding tube and the dysphagia (difficulty swallowing) and the possible CP diagnosis. The therapies and the doctor's appointments and the meetings with the scale in hopes that she has gained. The fears about possible surgeries and the outcomes from that and the constant state of puke-age in this house. The formulating a new eating plan to get her to puke less and eat more. The moving the kitchen table in front of the tv so that she is distracted and will eat more and won't try to pull her tube out. The other things going on which I won't share here and the Hashimoto's Thyroiditis which I was recently diagnosed with which exhausts me and the lack of time that my hubby and I have together and the loneliness and how hard it is for me to see a four month old crawling. My baby boy Tucker who has been gone from my life for almost six months and he was my rock and I could cry into his soft fur at night. I'm just having a hard time. It's all just hard. I had thought that leaving the NICU would signal the end of the hardship that we have faced, but oh how wrong I was. This is prematurity. This is what families do through.

But I must tell myself these TRUTHS:
*Doctors do not know everything. (I tend to put them on a pedestal).
*Doctors have continuously underestimated her and the power of a miracle.
*She is meeting her gross motor milestones but she just meets them a lot later than normal.
*It is not a definite diagnosis yet, although they feel that this is what she has.
*Sweet B's birth weight and gestation are somewhat unprecedented. There are so many factors going into her development, including recovery time for surgery and her sensory issues and the fact that she was the size of a baby two months younger than her when she was born.
*Sweet B's low tone is not noticeable to me or to those around her. It is mild.
*With mild CP, she can still walk and do things, and in their words, she might be a scholar instead of a sportsman.
*Most importantly, even if she had severe CP, she is here and she is alive and she has affected the lives of those around her and brought us much joy.
*Sweet B is a lover of life and she is a ninja ready to kick butt and take names.

They said that she might have a different walk, or she just might be behind in the gross motor department forever. She might be uncoordinated. It might not even be noticeable. There are people who have mild CP but just aren't diagnosed. They don't want to diagnose her now because that diagnosis will stay with her forever and they want to give her a chance. They say that she won't walk until at least two and a half years.

Do you know how much I wish that they would tell me how wonderful she is doing? She is sitting and rolling and talking and smiling and clapping and waving and is so smart! I went to this appointment expecting them to be thrilled with her progress. Apparently not. It was like pulling teeth in order to get them to say something positive.

One of my biggest pet peeves about having a child with special needs is the dumb things that people say to me. The suggestions are sometimes too much to bear, although I always just say, "Okay, I'll try that" or "Yes, we've tried that." However, I do believe that God has whispered the perfect things to say into the ears of my friends and family this week. I have been encouraged and I am doing a lot better than I was a few days ago.

From my sister: "So what if she walks late? There's a whole lot less 'OMG Where's Sweet B?'"

From my dad: "You don't know what is going to happen. She is going to be just fine."

From my friend: She told me a story of a relative who didn't walk until he was two but caught up very quickly.

From another friend: "She'll walk when she walks, regardless of predictions. Why cares if they say she won't walk?"

From another friend: "You let Sweet B tell the doctors what she's going to do, and not the other way around."

From my internet friends: "B is still the same baby." "CP is a broad spectrum diagnoses, meaning that it can be so mild that it is almost unnoticeable."

I'm not going to lie...It's been a hard week since the "possible" diagnosis. Lately I've noticed just how far behind she is and it scares me. I hurt for her. I ache for her in that she might not get to move her body like she wants to.

I was a dancer and hubby was an athlete and still is. Of course, she can have her own talents.

My biggest fear is that she just won't walk ever. Or that her brain is damaged. We never had an MRI done even though one was offered to me. I didn't want to have to do it and face it. She never had a brain bleed in the NICU and never showed signs of oxygen deprivation during birth or after. But there is something that is causing her to move slower and hit milestones so much later. Is it her vestibular issues from having such poor eyesight? Is it her sensory issues which make her not want to touch the floor which is hindering her moving about, transitioning her moves, and even crawl. Is she just weak? Is it because she was born at 1 FREAKING POUND AND ELEVEN FREAKING OUNCES??

Only God knows these answers and I really wish that I could say that I trust Him. My faith is not where I'd like it to be, and frankly, that scares me.

There is nothing to do but continue to do therapies and try to put her new eating plan into place.

I am joining a yoga center because Lord knows I need to get all zen up in here.

Just Breathe......Just Breathe........Just Breathe........Just Breathe........Just Breathe......Just Breathe...........

A Big Realization

noreply@blogger.com (Sweet B's Mom) — Tue, 18 Oct 2011 08:20:00 +0000

Is this blog about me or Sweet B?

My original intention was that it be completely about her. Her achievements, struggles, pictures, and daily happenings would be posted here.

But as I started writing post after post, I began realizing that separating her life from my life is all but impossible. At this point in time, we are one. We are inseparable, and my personhood blends into hers and hers into mine.

It is no secret to my close friends and a some of my family members that the last two years of my life has left us feeling like we have fought a war. It has seemed like every time I fight a battle and I finally win, another one comes along. I can't and won't go into too much detail on this blog, but let's just say that many days are a struggle for me.

If my pregnancy with Sweet B hadn't gone bad, I would still be teaching. I would still have a huge mortgage and I know that I wouldn't be happy. I'm where I wanted to be but I just got here differently than I had planned. I had always wanted to be a stay-at-home mom, but I didn't picture that it would happen this way. But things are still hard. I believe they are getting better. I truly do. I see Sweet B blossoming into a beautiful little girl.

And as for God....Well, let's just say that it saddens me that my relationship with Him is not where I would like it to be. It's a combination of me being bitter over the difficulties I have faced in the last two years, and the letdown that I have felt with what I thought was to be my home church. I have to admit that my bitterness towards God angers me. He has done so much and blessed us beyond measure. I want that bitterness to go away.

Last night I was looking through my pictures to send to an organization which is going to feature Sweet B as one of their miracle babies. It was perhaps the most healing thing that I have done in a long time.

During my two-hour foray into my photo albums, I discovered these TRUTHS:

*The last two years really and truly have been a kick to the gut. Most people would feel emotionally worn out. Many times I am told that I am extremely strong. It's time for me to believe it and not feel so down on myself when I am feeling weak.

*My husband and myself have shown an incredible amount of strength. We have not fallen apart. Our relationship has grown even closer after almost fifteen years of marriage. We have stepped up to the plate, and risen above what life has thrown us.

*Sweet B has proven herself to be a warrior. She is the strongest of us all, and amazingly, finds joy every single second of her life.

* I'd never thought myself to be a strong person, but I am.

I'd like to put a few events of the last two years into pictures for you, and of course I will leave out things that I feel are not appropriate to share here.

We miscarried our first baby.

I lost my beloved aunt to cancer.

Our new pregnancy went horribly wrong at just six weeks with a massive hematoma.

I was told that my baby was going to die. I continued to carry her.

I prepared for my one pound baby to be born.

I prepared for the birth with months and months of home bed rest at which time I had to stop teaching. I finished my pregnancy with six weeks of hospital bed rest, with a very poor prognosis.

My one pound eleven ounce baby was born.

I couldn't possibly travel the hour back home without my baby. We stayed at the Ronald McDonald House.

The NICU roller coaster began, with the threat of NEC, and having to go back on nasal cannula for after weeks of no breathing help. (See her distended tummy?)

We brought home our three pound fourteen ounce baby, and we were terrified.

I pumped and pumped and pumped for five months, trying to nurse every single day. I finally stopped. (enough gallon freezer bags to fill two huge freezers).

We suffered weekly weigh-ins at our doctor's office, praying to prevent having to place the g-tube. We suffered through six hours a day of begging her to eat. Both of us are exhausted.

FIVE hospitalizations, totaling almost four weeks. NG tube placed first, and then finally, a g-tube surgically placed.

A doctor diagnosed her with extremely poor vision, gave her glasses, as well as sent us to a geneticist to see if she had a particular syndrome due to the small cyst on her eye. (after a month of waiting for this appointment, we found out that absolutely nothing was wrong).

We have to put down my beloved dog of almost eleven years due to a sudden illness. My heart breaks.

We have weekly therapies as well as homework for me at home.

Looking through those pictures reminded me that hey, I am strong! And you know what? If I'm tired and not a super-mom that day, then it is okay. I'm doing the best that I can do. My husband is doing his best. Sweet B is thriving and beautiful and happy and a gift straight from the hand of God.

So from now on, I promise to be a bit more gentle on myself.

Do you know what else I plan on doing? I'm going to do a picture montage of the wonderful things that have happened in the last two years. Because in reality, we were given the gift of a lifetime-a beautiful gift that I have seen many dear friends of mine lose.

We are very blessed. I realize this whole-heartedly.

But I also reserve the right to cry into my pillow once in a while :)