Piper and the Kids

Smile!

2012-02-11T23:25:00.001-05:00

Today, I got a whole lot of these smiles and giggles and full-on belly laughs :) She may not like taking yet another medication but I am thinking this reflux med is a keeper :)

We had a quiet night

2012-02-11T12:13:00.000-05:00

On Wednesday, we talked a bit with Dr E about Baby I's reflux. He thought starting some Zantac would be a good idea to make her comfortable leading up to surgery and during recovery so yesterday we headed in to Dr A's office to get a script as well as to have her cough checked (again). Lungs are still clear but poor little baby girl just sounds awful :\

Got the script filled for her Zantac and gave her the first dose last night--she hates it even more than the Lasix and Aldactone! Poor little gal chewed me out for making her take it. However, it has made me cautiously optimistic since we had a rather quiet night last night. She still woke up often to nurse (in the last week or so, she just doesn't have the energy for a full nursing session so she eats for a minute or two and then has to rest. Instead of a feeding taking ten to twenty minutes, it takes about two hours) but there was no crying or restlessness or misery. And no crying and misery this morning, either. She is back to being a "happy spitter" instead of a miserable one. Eating has become so tiring for her that it breaks my heart to see any of it spit back up but at least it isn't hurting her anymore :) My hope is that this is not a fluke and she continues to be comfortable!

The World is a little brighter....

2012-02-10T09:21:00.003-05:00

Since we found out that at some point in the near future Baby I will need open heart surgery, I have been focused on some of the clothing items she will need while in the hospital. On a couple of the online CHD groups I have found, the list is the same--dress baby in long-sleeved button up shirts, a diaper and baby leg warmers and socks. Button-up shirts because for a while after surgery, you can't lift their arms over their heads to pull on a pullover shirt. No onesies or pants because they make diaper changes more difficult for baby because of the extra lifting and moving that can cause pain in the incision area. Long sleeves and leg warmers to keep them warm. On Wednesday when Dr E told us, I stopped on the way home trying to find these things. And couldn't find them. Yes, I am obsessing over the little things rather than thinking about the big things. Yes, I am completely stressed out over not finding long-sleeved button-up shirts or leg warmers.

But that stress has been partially lifted :) Several people have offered to send Baby I some hand-me-down baby leg warmers that their children no longer news :) And in the midst of a situation we wish we never even had to consider, the world is a little brighter, a little more joyous, a little more thankful. People who have never met Baby I and have only seen pictures will take some time out of their day to send her something to make her stay at the hospital more comfortable.

Thank you, world, for having such wonderful people :)

Open Heart Surgery

2012-02-09T00:41:00.001-05:00

Today was Baby I's five month cardiologist appointment. Every month, we go in expecting to hear its time for surgery and each month we are both relieved and scared that it is postponed another month. Relieved because it means she is doing okay, considering, and that there is still hope that her heart will repair itself and she will never face the trauma of surgery. Scared because it means another month of watching her struggle to breathe, of worrying about every cough and gasp and ounce, of anxiously watching to see if she begins to turn blue. Surgery could fix all of that, could ease her breathing, help her gain weight, give her a normal thump heartbeat instead of her swish-swish-swish beat.

This month, there is no postponing one more month.

Good news first--her ASD (which was medium sized at birth) is almost completely closed! That one has steadily shrank and the cardio thinks the surgeons may place one stitch in it to pull it closed and help it seal the rest of the way (or it may be completely closed on its own by the time she gets to surgery). One less thing to worry about :)

Her VSD, however, still has not budged. It is oval shaped, 5x9mm, and is the defect causing most of the problems. She has been on generic Lasix and Aldactone since she was two months old to help reduce the fluid buildup on her heart and lungs but its worse. He upped her dose of Lasix to try and help her out until surgery but the left side of her heart is now enlarged.

The artery that wasn't growing properly at her last echo? Even worse now :/ It is the Pulmonary Artery leading to right lung (or was it the left? I left my notes in the van and the husband took it to work) and it is half the size of the Artery leading to the other lung. If they both were small or large, it wouldn't be as big a deal but the large difference in their sizes is a problem. He thinks the surgeons may want to do a cathartization before surgery but they may decide to repair it while she is in surgery. One more thing to wait and worry about.....

The last thing he told us is that she has an extra vein leading into the heart that shouldn't be a problem, it will just mean they have to place an extra line or something during surgery for bypass. He said that during pregnancy, there are four veins leading in and at birth, they pair up and fuse together to form just two veins. Two of them did fuse for Baby I but the other two remain separated. I have a new thing to obsessively research while I wait ;-)

Oh, and the other worry was the fact that she has completely fallen off the growth chart. She was up to twelve pounds nine ounces, not quite one pound from her last visit. Every ounce was hard earned but she just can't get enough of them and feeding has become increasingly difficult for her between the reflux and how tired she gets.

Next step is for Dr E to send Baby I's file and echo pictures and EKGs to the surgery committee for review. The committee meets on Tuesdays at the Children's Hospital so we have at least a week before we hear anything, possibly two if the surgeons are called into surgery and can't make the next meeting. Then we will get a call to schedule any needed tests/procedures before surgery and find out how soon the surgeons want to operate.

It just doesn't feel real.

Another busy week

2012-02-06T22:49:00.000-05:00

It seems like many of Baby I's appointments get grouped all in the same week so we are constantly running about and then the next week we just have her weekly weight check and that's it :p This week is only three appointments, though, so that isn't too bad :)

First appointment of the week was this morning at the Children's Hospital in the City to get the next round of Synagis. The wonderful IBCLC we work with now and then suggested we trying nursing through the shot to see if that helped her pain levels so we gave it a shot555 today. It took Baby I a few moments to realize she was getting a shot so it was just about done before she started crying and she cried for less than a minute and then went back to eating. YAY! Much better than last time! I am hoping the nursing helped and it wasn't just a fluke so we can get similar results next month. She was so miserable and upset over the shot last month that it was a relief that she took it so much better this time. Still hard to see her upset and hurting, even if it was to a lesser degree :\

This afternoon brought an emergency trip to the pediatrician's office (so I guess you could say we have four appointments this week?). Baby I had a very slight cough over the weekend, probably the same virus that made her brothers (and me) sick. I had thought she was going to escape it before the little cough started but, alas, no. The little cough turned into a wet congested cough by last night and just continued to get worse over the course of the day. By mid-afternoon, poor little dear would cough, gag, throw up, and then cry :*( So off we went to see Dr. A. Baby I's lungs are clear, her ears are clear, no signs of infection so Dr A. is thinking its just a regular ole cold made a little more miserable by Baby I's reflux plus the underlying congestion she always has from her heart condition. Poor little mite :( Oh, and at the ped's office, she came in at thirteen pounds even. Which is slightly off because she was wearing her onesie today to keep her warm but the ped says that shouldn't throw it off by more than a few ounces and so she should be hitting her one pound mark at the cardio's office :D Now let's hope the coughing-that-leads-to-vomiting doesn't make her lose some of that precious weight and put her back under a pound for last month's weight gain.....

Wednesday is cardio and we get our next echo to see how her holes and artery are doing.

Friday is one of her home nurses coming to visit.

I have many things I should be doing but I think I might sleep instead :p

Six more ounces!

2012-02-03T00:19:00.003-05:00

We have been hit by another round of The Sick. S spent most of the weekend feeling miserable and missed Monday, Tuesday, and Wednesday of school. At least there was no vomiting this time! Just a regular cold--low-grade fever, chills, aches, congestion, runny nose, sneeze, and cough. S sure was happy to go back to school today :p He doesn't even like weekends or vacations because it means he has to be away from Miss B and his friends LOL He has a really great day in school today :)

B started sniffling two days ago and by this morning, the poor bubs sounded just awful :( His cough rattled and he was wheezing up a storm :( I perhaps may be just a wee bit paranoid when it comes to coughs in the kidlets--I am prone to bronchitis and get it several times a year so when I hear rattling coughs, I want a doctor to listen to their lungs :p Every doc who treats my kids learns this quickly during cold and flu season :p Thursdays are when we try to do Baby I's weekly weigh-ins so I brought B in so Dr A could have a listen. His lungs are clear but he has some infection going on in his ear and upper respiratory system--poor guy takes after me: it develops really quickly and won't go away without a little help. She prescribed some meds for him to take to clear things up so hopefully he won't feel so bad soon!

Baby I weighed in at 12lbs 9.8oz! Way to go, little girl! Last week was 12.3 :) Fingers crossed that Wednesday's cardiologist appointment sees a few more ounces--Dr E wants her to gain at least a pound a month and we are almost but not quite there. Dr A is thinking we may need to start thinking about starting Baby I on Zantac for her reflux--poor little thing is starting to experience more and more pain and crying from it and while the cereal did help her keep more food down, she has now decided she absolutely will NOT eat it anymore so we are back to copious amounts of spit-up. I am going to talk to Dr E about it and make sure Zantac won't interfere with her meds/heart and if he gives the go ahead, we'll talk about it with Dr A. It would be lovely if we could stop the hour long crying and arching the back and misery sessions :(

Next week will be a busy one: Synagis on Monday, cardio on Wednesday, and one of the nurses on Friday. I am REALLY nervous about cardio; we get the next echo. Have the defects closed any more? Did that restricted artery grow at all or is it still too small? Will her blood pressure be OK? Will her lung function still be in the OK range or is the continuing decline in her breathing a sign that it won't be all right this time around? Is her little heart keeping up with her body or is it time for surgery? Part of me wants to avoid surgery, to let her little body heal on its own, to not have to take the risks of open heart surgery. Part of me just wants my little girl to be able to breath without straining, to play for more than a few minutes without being flushed and sweaty and tired, to nurse without getting dusky and exhausted, to grow normally instead of fighting for each fraction of an ounce. *sigh*

Brotherly Love and Other Things

2012-01-29T00:29:00.001-05:00

Brotherly Love

S has wanted a sister since he was old enough to ask for one. When he was just a toddler, he would get so excited when we would meet a baby girl and he always asked me if we could "take home?" He wanted a little girl so bad!! When he was three, I got pregnant. S was insistent the baby would be a girl and if anyone used the word "he" to describe the baby, he would instantly correct them. He wanted a girl and by, golly, he was going to get a girl!

And then came our anatomy ultrasound where we found out the gender. A little boy. S spent weeks refusing to even acknowledge that there was a baby. It was cute and sad all at the same time ;) Eventually he came around and agreed that a little brother could also be cool and he even started to get excited about the pending arrival of Baby B. However, he was quite serious each and every time he told me I needed to have another baby and a girl next time.

When Baby B was around nineteen months old, we found out about our third little one. Again, all S could talk about was getting a girl, a baby sister. He wanted to go to the ultrasound to find out in person so we all went along with my cousin who was also insistent we needed a girl. The ultrasound tech is measuring bits and pieces with S narrating body parts behind her (look, that's an arm.....a leg....lady, is that her ribs? He has a remarkable memory for things that are important to him and the office we went to with B was great with kids and our ultrasound techs taught him how to identify parts and apparently he still remembered). I saw the little "hamburger" and waited for the tech to announce and for S to go crazy. She looked at it from a few different angles and then announced to the room that we were having a girl. I am sure she regretted not having earplugs when S realized his most fervent wish was coming true ;) (B, on the other hand, could have cared less. He just wanted to go back to the waiting room and look at the Highlights magazine.)

Now that Baby I is here, S never misses a chance to love up on her:

And Baby I loves it :) Whenever she sees Big Brother S coming, she is all smiles and giggles and soaks up his love and attention. When she is unhappy for some reason, S comes running to comfort her. He loves to hold her and hug her and give her kisses. He has installed himself as her protector and is quick to remind people that her heart is sick so they must be very careful with her and if they are sick, they should stay away because its so 'portant to keep her healthy. If wishfulness was powerful enough, she'd be healed from S alone :)

She is a bit more wary of Little Big Brother B ;-) He also adores her but sometimes I think he believes she is a cat as he likes to pet her. He can get a little rough so we have to watch him closely but when he is being gentle, he can always make her smile and laugh and he, too, loves to hold her. Sometimes she'll be napping beside me on the bed while I fold laundry and B will quietly creep up on the bed to hold her hand or lay next to her.

Someday, this little girl is going to be so embarrassed by her big brothers as they do a more thorough job than Daddy grilling all of her potential dates ;-)

Other Things

B will hopefully meet with the speech therapist soon and be officially approved to do therapy. One of the Lovely Ladies stopped by with the paperwork to get him enrolled and referred to speech and she is pretty certain he should be approved no problem. Poor B has been getting really frustrated lately because he has added all of these new words to his vocabulary but I am the only one to understand him :\ He tries to tell Dad or his brother or the grandparents what he wants or feels and they are left scratching their heads with no idea what he is trying to say. S was excellent at using gestures to illustrate his words but B stubbornly just keeps repeating the same word/phrase over and over and has a meltdown if no one gets it. *sigh* He has been giving a whole new meaning to Terrible Twos around here! I am hoping the therapist can help him speak more clearly--the things I did with S are not working with B :p

I also heard back from the school psychologist about S's ADHD and the effect it is having on his schoolwork/classroom. We are trying to get him evaluated to see if any additional therapies/services would help but she wants to give him more time. While we have seen some small improvements after he started a little behavioral therapy, his test scores are still low enough that he won't pass first grade. Most of the stuff he tests so poorly on he can do and is often very good at it when he is focused. Unfortunately, most of the time he is distracted or hyper or wanting to do something else. Plus I have concerns about the fact that he rights quite a few letters/numbers backwards and tells me he just writes them the way he sees them. Dyslexia runs in the family on both sides so the sooner we can check to see if its that, the better, so he can get the proper help. It could just be him not remembering which way the letters point but I would much rather have him do the full evaluation and find out if he qualifies for some extra help to get him on track. He is a smart kid, and does some amazing things......but he needs a little extra help to figure out how to handle everything. The Lovely Ladies did warn us that the school may try to delay or not even do the full evaluation and that we should push for it so that is what we are doing. Wish us luck!

And one last gratuitous picture, just because I can ;-) Baby I often has trouble regulating her temperature and will switch between hot and cold in minutes so we have to be prepared to layer her up and down and have plenty of blankets on hand. She looks awfully cute in her warm layers :D

Weight check

2012-01-28T09:46:00.001-05:00

We went in the wrong direction :/ 12 lbs 3.0 oz (last week Baby I was 12.3.8). Although if you are going to go down, at least it's less than an ounce :p Her ped considers this holding steady. Hoping for a nice gain next week, though!

The World is Amazing

2012-01-24T00:05:00.000-05:00

Baby I has always been interested in the world around her. On the day she was born, she was lifting her head up and looking into my eyes and watching whatever came into her field of vision. Over the last four months, when she wasn't sleeping, she was watching.

Today, though, I realized that she can see much farther than we had thought. She was amazed at our fishtank, delighted by her brother dancing across the room, enamored of her Grandpa walking through the door. And she isn't just watching anymore, she is demanding to be brought closer and included in whatever is happening.

Tonight, we used one of our Christmas giftcards to have dinner out and rather than sitting contentedly in our laps as is her habit at mealtimes, she demanded to be picked up and held against her Daddy's shoulder. At first, we thought she just wanted to stand but it soon became clear that she couldn't see much beyond the things on our table while sitting down--standing, though, she could look out over Daddy's shoulder and watch the people at other tables and walking around. She could smile at them and they would smile back. She could babble at passing waitresses and they would stop and talk to her.

She has always been amazed at the world around her. But her delight today at realizing that she can change what is happening in that world, that people (other than mom or dad or the Brothers) will respond back, was amazing to us. With all of the worries and stress and trying to balance appointments and paperwork and everything else, it is easy to forget that simple little things like someone returning your smile are amazing. Thank you, Baby I, for reminding us that despite the rough edges, there is always something to marvel at in the world.

Hey, Mom, look how smart I am!

2012-01-22T01:18:00.001-05:00

This morning, I was up much too early so I was quite happy when Baby I woke up ready to nurse and cuddle. I curled up in bed with her while she nursed and when she was done, she rolls over, smiles, and stretches. I am very pleased to see that she is stretching above her head, since that is one of the things we are working on :)

Then she stares at her hands a moment and begins opening her hands, making a proper fist, opening her hands, touching her thumb and forefinger together, opening her hands, making a fist, etc. She is using that little thumb the proper way!

Then she brings her hands together in front of her, stretches them out to the sides, up above her head, then back together in front of her. Repeat a few more times.

I am laying there beside her, smiling at the serious look on her face as she plays, and then it occurs to me...she is doing our routine! The same order, the same number of repetitions, the same movements we have been doing together a couple times a day for the last couple of days since The Lovely Ladies suggested some at-home PT would help her. She remembered her exercises and was doing them by herself :) of course, once she finished her routine, she went right back to refusing to use her thumb properly and not wanting to stretch out but at least we know she she can learn and even practice her PT by herself LOL

You would think this would mean she no longer fights me when I do her exercises with her but nope, she still doesn't want to do it :p I keep her laughing so she doesn't notice as much but most of the time, she isn't thrilled to be doing it :p

Every ounce is a celebration

2012-01-21T00:04:00.001-05:00

Baby I had her weekly weigh-in today--last week she had not gained even a fraction of an ounce. Today, she was up a bit over five ounces :) She went from 11 lbs 14.4 ounces to 12 lbs 3.8 ounces :) It is less than a "normal" baby but we will take it!

Baby Workouts

2012-01-20T00:03:00.001-05:00

One of the nurses who visits Baby I at home asked if she could send Early Intervention out to evaluate her. Because of I's growth problems, the nurse was worried that she might be behind in other ways and thought a visit from the experts would be a good idea.

I love the ladies who came out to see her :) They were so sweet and they just adored my kids LOL Baby I is ahead in several areas but there are a few things she is behind on. Not enough to need formal physical therapy but they showed me what to do at home to work with her every day and see if we can get her caught up. They will continue to monitor her and if she isn't progressing and falls further behind, they can get her set up with an actual Physical Therapist to work with.

The most important thing we are to work on is her thumbs. She grabs at things but does not use her thumb--she just holds toys/blankets/whatever with her four fingers and keeps her thumbs tucked in against the sides of her hands. Most of the time, she holds her hands in fists, as well. So whenever I can, I am supposed to stroke the backs of her hands to encourage her to open them and work with her on using her thumb to grab things. It never would have occurred to me that this was a problem--I just figured it was a baby thing she would outgrow :p The Lovely Ladies said that it can cause problems down the line and that is why they would like to see her begin to use that thumb as an opposable digit instead of just being held against her hand :p She is not fond of wrapping that thumb around things and fights us putting a toy or something there for her to grasp. When we get the thumb around the toy, she will slip it back off and tuck it back against her hand. However, I am seeing some success using my fingers instead! If I get her thumb and fingers around my finger, she will hold onto it and keep her thumb in the proper position :)

While we are working her thumbs, I try to get in the next couple of things they want her to work on--bringing her hands together in front of her chest, stretching out the muscles in her shoulders, and raising her arms up above her head. She used to love to put her arms up but the last few weeks, she just doesn't want to and fights me every time I need to raise her arm up for something (usually to get dressed). They noticed that her muscles through her back, shoulders, and torso are very tight (it can be difficult to get her to sit because of it) so the different stretches will hopefully help. I get her to hold my fingers to work those thumbs and then I sing silly songs and make her arms "dance" as we bring her hands together and then stretch them out and up and touch her cheeks and we are very silly and it makes her giggle, even as she fights me because she does NOT want to do any stretches LOL I am hoping her amusement with the silliness lasts since trying to get her to do something she doesn't want to without something to distract her will be no fun ;)

While they were there, they asked if they could evaluate B since they noticed his language is not very clear (THANK YOU!!! SOMEONE WHO AGREES WITH ME. S had a speech delay and B is following the exact same patterns S did at this age. But because B is technically in the normal range for development, neither the old ped or the new ped sees any reason to intervene yet. If I had known this Early Intervention program existed, I would have contacted them months ago to see B instead of trying (unsuccessfully) over and over to get a referral from the doctor :p). He is such a bright little thing :) He was brilliant and they were so pleased with how well he did on all of the development assessments and it was nice to hear how smart he is ;) But they, too, see the difficulties he has with speech and they want him to be evaluated by their speech therapist, especially since there is a family history of speech delay. YAY!! As much as I don't want B to have something "wrong", I do want something to be wring. If that makes any sense--I want him to qualify for speech therapy so isn't so frustrated that only mom can understand him and even then not all the time. I don't want him to have the same struggles S had (and in some ways, still has).

They were also a wonderful source of information for S :) A few months back, the school psychologist evaluated him and he scored very high for ADHD. They have been doing a little behavioral therapy for him at the school and while we have seen some improvements at home, things have gotten worse at school. They told us that we would need to go through the pediatrician and could get him some more therapy that way. So we go to the ped, get him his official diagnosis and then.....nothing. The ped can prescribe medication, which we are not ready to do yet, but she tells us for anything else, we go through the school. The school that sent us to her. *head desk*

The Lovely Ladies have seen this before and they took down lots of information about Sterling and his school so they could gather up the information they have that could help us and we will go over it next week when they follow-up with Baby I and do some paperwork for B. Even the little bit we talked about while they were here was helpful and we never would have known what we were supposed to do without them. Sometimes it seems like no one wants to be involved so they don't tell you what you need to do. But the Lovely Ladies know what to do and with their help, so will I and we will get S the services he needs to be successful at school (he does pretty good at home academically. But once he gets to school, its like he can remember nothing he does at home, even things he is really good at, like math. Frustrating.)

All-in-all, it was a very productive suggestion Nurse R had, to have EI come out to see Baby I :D

The stomach bug is making its way through the house

2012-01-16T23:57:00.001-05:00

Last week, Mr. Piper has the stomach flu. A Few days later, I had it. Now, a few days later, S has it. I am hoping B manages to avoid getting it as a vomiting two year old is even harder to console than a six year old :( But most of all, I hope little Baby I can avoid it--she does not need to be that sick with her health problems and with the problems she has gaining weight :/ I am hoping all of the antibodies she got through breastfeeding while I was ill are still doing the trick and will keep her from getting the virus from S. She and S have such a strong bond that it is pretty much impossible to keep them apart :p

The cereal is helping her keep down most of her breastmilk although we had a bit more spitting up today. The pain of the reflux is bothering her more, though--poor Baby I has not been sleeping well at night--if I hold her upright she is fine but as soon as I lay her down, she is fussy and crying and just doesn't feel good :( She will nurse for a ew seconds and that seems to ease the discomfort enough for her to sleep for a few minutes at a time but the majority of the night is short naps and then comforting. I hope tonight is easier for her...and for me since I could really use a little sleep :p

Reflux

2012-01-15T01:22:00.001-05:00

We are on day three of trying the rice cereal and seeing if it helps with Baby I's reflux. The first time, she wasn't so sure about it--she rolled it about in her mouth, gummed it, smacked her lips, and touched it with her fingers. Then she decided it was fun and blew bubbles with it ;) Most of it went on her face and hands as she played with it but she did swallow a little.....and she spit up less after nursing. The second day, she swallowed a bit more but still had great fun playing with it, but she spit up even less. Today, she got excited when she saw me with the bowl and spoon. She giggled and squealed and opened her mouth so I could spoon some in. And she ate it all. She was all about swallowing it today, no playtime with the cereal. And ever since, she has not had her usual post-nursing session fussiness where she cried and arches her back before spitting out enough breastmilk to soak her clothiing. She did a small amount of complaining and spit up a tiny little bit and then was happy. Perhaps, if this keeps up, she'll be able to gain weight a bit easier :)

Car trips

2012-01-12T09:03:00.001-05:00

Baby I is reaching the age where car trips no longer put her to sleep. In many ways, I enjoy this stage as it means I get to listen to her coo and babble and sing along with the radio as we drive. When I talk to her, she talks back. When the boys make funny faces at her, I hear her laughing. She likes to watch the trees and buildings go by out the window. She spends a lot of time just staring at her hands, still amazed that they do what she tells them to do.

But it also means that when she is over being in the car, we hear about it. Loudly. Unfortunately, we spend a lot of time in the car and she is not very fond of it :/ She is good for a short time and then she complains and complains and complains. But there are doctors to visit and first graders to take to school and trips to the grocery store. I hope she decides soon that she doesn't hate the car after all....

It has already been a long week...

2012-01-11T23:13:00.001-05:00

Yesterday was our January cardio appointment and it was much better than I feared--she has been cleared to wait another month :) I am always hopeful that she will be well enough to wait and wait and wait until one day she doesn't even need surgery at all :p The realist in me knows that is unlikely but the longer she can wait, the better her chances at a good outcome for her surgery so every month Dr K says we will keep an eye on her and see how she is next month is a good appointment :) Her pressure is up a little and her breathing is heavier and more congested as I had been observing but he thinks it is still okay enough that she will be fine. He was pleased that she gained a pound over the last month--it isn't as much as you'd see in a normal baby but for a heart baby, it is enough :) We are to continue the weekly weight/vitals checks with Dr A and of course continue looking for our List of Things You Must Go Immediately to the Hospital For. *sigh* I hate that we have to have a go-to-hospital list. It is just yet another reminder that her health can change in no time at all and we could have a happy alert baby one day and be in the ICU the next. Positive thoughts tonight, though--in her four short months with us, she has never shown any of the List symptoms :)

Today was her four month well baby visit with Dr A. Baby I continues to be ahead of the game developmentally--she may be tiny but she is energetic and strong! She complained for a few seconds on one of her shots but didn't cry and was cooperative, even drinking the oral vaccine without spitting it at anyone the way she does her heart meds ;)

For the last few months, I have noticed that she had begun to spit up more frequently but didn't think anything of it as it wasn't that much. But it kept increasing and I thought perhaps it is being caused by the meds. One of the listed side effects of her meds is gas and boy, did she ever have it bad. Perhaps the gas was causing a little upset and spittiing. But over time, her body adjusted to the meds and while she still occasionally will have an impressive burp or fart, for the most part she has adjusted and she isn't bothered by gassiness. The spitting up, however, continued to get worse. The last week or so, she soaks her clothing several times a day. Every few days she will have a session of screaming and crying and nothing makes it better. She has begun to arch her back when these crying fits hit. Nursing will calm her down for a few swallows and then she will cry again. She wants to nurse, asks to nurse, but it just isn't soothing enough for her. I was thinking she may be getting reflux but I didn't want it to be that because she has enough to deal with :/ But I talked it over with Dr A today and she is also thinking reflux :( Mild but getting worse--not bad enough for meds yet but if it continues to get worse, we'll need to see if she can take anything with her heart meds.

For now, though, she suggested cereal to try and soothe I's little tummy and help her keep down her breastmilk--perhaps she will grow a bit more if it works. Dr. A said she normally wouldn't recommend it but for I's special circumstances, it would be a good idea to offer it and see if I will take it. I must admit, I have never used cereal before--I have always waited until the kids were at least six months and showing all the other signs of readiness and then I just gave them regular food. Sweet potato was always first, then avocado, then banana. After that, whatever was in season that we were eating. We had planned to do the same for I. But I bought a small box of organic baby cereal and mixed up a spoonful with some breastmilk and we tried some out at dinner. She was not sure about this strange stuff we put in her mouth LOL She smacked her lips/gums, she rolled it around on her tongue, she spit some out and then licked it off her lips, she made faces at us, she fussed at us but then once her face was wiped clean accepted another little bite to blow bubbles with, etc. But amongst the playing, there were a few little swallows and the amount she spit up after she nursed tonight was a lot less. Could be coincidence, could be even a few small swallows of the cereal helped. We will try again tomorrow and see how it goes.

Synagis, the first

2012-01-09T23:32:00.001-05:00

Today was our first trek into The City to the Children's Hospital. I had never been there before so I guess it was a good thing we needed to know since if I starts showing signs of distress, we would need to take her to the Children's Hospital and if she needs surgery, it will be done there. It is very bright and cheery and B thought it was a good place :) He enjoyed the revolving doors and the elevator rides and the toys and brightly colored animals everywhere.

Registration took longer than expected but we were early so we still made it up to the Infusion Suite on time. They weighed I and she was an even twelve pounds--yay!! Since she stopped growing once she began the heart meds, every new ounce is a source of celebration and she gained four of them since Thursday :D Once she was weighed, the nurse administered the Synagis to another baby who was waiting--that poor baby was not at all happy about it :( B got very upset and wanted to go over and comfort the baby and kept saying "oh, no. oh, no. oh, no" He was not at all happy when the nurse prepared I's shot and brought it over to give to her--Mr. Piper had to hold him so he wouldn't try to interfere. I, of course, was flirty and happy and all smiles and it made both the nurse and I feel bad because we knew what was coming :/ I, like the other baby, was not at all happy and let us know it. I cuddled her and rocked her and offered to nurse her but she didn't want to at first. After I calmed down, the nurse came over to check on her and as soon as I saw her, she cried again--she did not want the nurse anywhere near her! The nurse gave her her space and she started to nurse and once she was good and distracted by her yummy breastmilk, the Nurse slipped back in to check her over and make sure she didn't have any type of reaction to the shot (she didn't. Not even a red mark on her leg where the needle went in). Once I finished her lunch, we dressed her again and headed out.

On the way out, we noticed a playroom for brothers and sisters--good to know for future visits since B got very very upset after the shots were given and demonstrated for everyone what the terrible twos really are LOL It made the Nurse nostalgic for the days where her now-grown children were two :p Ah, the things you miss when they are well pST those stages!

I has been a little cranky but overall she did very well. I still am not looking forward to doing it again next month :p

One thing I wish, though, is that Synagis was more effective. One statistic I read is that Synagis only prevents hospitalization from a RSV infection in one out of seven babies. However, while the baby may still be hospitalized with RSV, it is still a milder case for most that if they got RSV without Synagis. With S and B bringing home germs from school and Sunday School and just normal day-to-day trips to the store or to play, I very much want I to have that extra layer of protection. Synagis may have a low chance of keeping her out of hospital if she contracts RSV but at least it gives her an excellent chance of surviving what could be fatal to a little one in her condition.

Cardio tomorrow--wish us luck that she can go another month without surgery :)

What makes us more special?

2012-01-08T22:13:00.001-05:00

I touched on it briefly before, but I've heard it again recently and its on my mind. Some people think that telling me that they just know nothing will happen to I because God wouldn't let someone as sweet/beautiful/precious be harmed will comfort me. They mean well, I know that, I appreciate that. But I can't help that it instead irritates me and at times makes me downright angry (not that I would ever tell them that). Why? Because sweet, beautiful, precious, innocent children die every single day for a myriad of reasons. God "let" it happen to them so what makes us so special that he wouldn't "let" it happen to us. Don't get me wrong, I believe in God, I just find it hard to believe he micromanages. If he did micromanage, why is there suffering or sadness or death or hate? If he only micromanages sometimes, what makes one family more worthy than another to have their child saved? Or is it all random? Random seems even more cruel than the thought that he chooses based on some unknown criteria to save some and watch others die...

I guess I am a believer in free will. God gave us free will but the only way it can truly be free is if he stays out of it. I think he can step in and guide here and there, leave advice for us, maybe even nudge us in the right direction every so often, but it is still up to us what does or does not happen. And by us, I mean the collective us--every person has the potential to impact everyone else. Just because one person does everything right doesn't mean a good outcome because the person next to them may make a poor choice that ruins it for everyone--we see this one played out over and over, don't we? One bad apple and all that :p But aside from the free will of the people o this world, there is also just fickleness of chance itself. A gene or two randomly changes and my daughter has heart defects. Chance.

I think being a parent has shaped my view of what God is. As a parent, I have very little control over things. Sure, I can guide my kids and teach them and ask that they do the things I want and though I can physically move them to the places I want them to be now that they are little, I cannot control what they say or think or some of the things they do. And as they get older, more and more time will be spent watching, hoping, supporting. If God truly wants us to have free will, I imagine much of his time is spent the same way where it concerns us. I am not sure I could reconcile the theme that GOD IS LOVE with the idea that he will save my kid but not another. To give us agency, he has to take a step back and support us but not interfere to that degree. Perhaps he has nudged us in directions we did not understand so that we would be at a place where we could devote the time and care I needs but he can't just "fix" her, not if we are to be creatures of free will. We live with the consequences of our world, whether or not they are of our own personal making. Perhaps her defects were caused by environmental factors because not everyone chooses to be a good steward of the earth. Perhaps they are genetic, little hiccups in the code caused by the points in the family tree where cousins decided to marry and have children. Perhaps it was me forgetting to take my vitamins sometimes. We will never know, all we know is we have to live with the consequences and hope for the best.

I have been blasted for this before but here it is: I do not pray for I's heart to be healed by God. I just don't believe that is how it works. I do, however, pray that I have the strength to do whatever needs to be done, no matter what happens. Strength for her, for my boys, for my husband, for myself. In particular, I pray for the support I need, the love, the guidance, to do what I must. God may not be able to stop us from falling, but it sure is nice to have a hand up and a hug to get us going again.

Upcoming appointments

2012-01-07T23:33:00.001-05:00

Poor I is going to have a rough week next week--she has appointments everyday but Thursday. It certainly will keep us on the go!

On Monday we go into The City for her first Synagis shot. I was doing some more reading on it today and a full course (five shots) runs between eight and sixteen thousand dollars. Holy Cow. Since it took us two months to even find somewhere to do it and get her approved, she is only getting three shots instead of five but still. O_o Thank God it is covered or I don't know how we would pay for that.....

On Tuesday, it is off to the outskirts of The City to see her cardiologist. The days leading up to a cardio appointment are anxiety-laden for me. And I am anxious about any news we might get, good or bad. If we get good news, I worry about what that means for her symptoms--if her heart is better but her symptoms are worse, is there something else wrong with her? But then I worry that since her symptoms are worse, it will mean her heart is worse and we will be talking about scheduling her surgery, the thing we desperately want to avoid but also sometimes wish we could just do, if that makes sense. There is always a risk with surgery, even though the prognosis for her conditions is excellent. But the small chance that it could go badly is reason enough to not want to do it. But then again, I hold and cuddle her every day and listen to her struggle to breathe and every week I anxiously wait to see what her weight will be at the per's office. I worry about how much she sweats, even though her is cold to the touch. I worry about the fact that she almost always sounds congested, even though there is no drainage from her nose. I worry that when she turns pale, turning blue is just a few moments away. I worry when she is trying to nurse but has to choose breathing instead and so has to go hungry because she just can't manage to breathe and suck at the same time--up until this point she has always been able to wait a little bit and once her breathing calms down, she can eat but what happens when it doesn't calm down and she can't eat? Surgery could fix all of those things, despite the fact that it terrifies me to even think of them opening up her little heart.

On Wednesday, she sees her ped for her four month well baby visit--more shots, poor thing :(

Thursday we have a day off

Friday she sees the home health nurse.

In other news, poor S was feeling a bit down this afternoon--Baby I was feeling a bit grumpy and usually if S holds her, she cheers right up but today she just started to cry when I put her in his lap. Poor kiddo was just a little heartbroken. I tried to make him feel better by talking to him about how much teething is bothering her and he seemed to accept that but I am hoping she is a bit happier tomorrow so he can hold her and get his usual smiles from her!

It only took two months.....

2012-01-06T22:40:00.001-05:00

Hurray! I finally got approved and scheduled for her Synagis (RSV shot)! Two months ago when she started her heart meds, the cardio told us she needed to get RSV shots because her heart condition puts her at a risk and a RSV infection could prove deadly. He wrote down what she needed and told us to ask her primary care physician to give it to her. Dr N (the first PCP she had, not the awesome Dr A she just started seeing) didn't do them but he referred us to the Health Department. The Health Department Nurse? Didn't even know what it was. *head desk*

Suffice it to say, we went around in circles, banging on heads on brick walls, trying to track this down for I. We called doctors, clinics, hospitals, NICUs, pediatrics, anywhere we could think of or that someone referred us to. Some told us they didn't carry it, some took our names and called us back after checking to see if they could do it for us, some said they only do it if the child is currently admitted to their hospital. But again and again, the answer was no no no no no. *sigh*

We talked to the cardio again and he referred us to the Children's Hospital since we had tried local hospitals. The people who answer the main lines for the CH are not that helpful, though--I ask for help in figuring out who to talk to and they repeat over and over "Unless you can give me a name or department, I can't help you." Back to Dr K, the cardio, who gets back to us in a few more days with a contact name! Finally, someone to talk to. He says call up Amanda, make an appointment, get the shot. I'll bet you can guess that it won't be that simple, right?

I has to apply for and be approved by the CH Synagis program. So we face several more weeks of waiting as Amanda requests records, fills out paperwork, badgers the insurance company to agree to pay for the shots, etc etc. But at least we had someone navigating this step for us :) Huge THANK YOUs to Amanda for handling all of it :) She knew exactly who to talk to, what to say, what forms to fill out and what records to request. We got the call the other day that I has been approved to receive Synagis through March and that her dosages were being shipped to CH. Today, we got the call that they had arrived and she has an appointment Monday to go into the City to CH and get the first dose. Luckily, she has not caught RSV over the last few months when she should have gotten the shots and didn't.....

Let us hope the next thing she needs is a little easy to find!

Keep beating, little heart.

2012-01-05T22:22:00.001-05:00

After I's two month cardio visit and the start of her medications (Lasix and Aldactone), we began to see improvements in her mood and behavior. Her breathing was quiet again and had slowed down. She was more alert and spent more time awake. She nursed faster and more actively without as many sleepy breaks mid-nursing session. How much of this is due to regular growing and getting older and how much to the medicine, I don't know. But she was happy and active and aside from her heart defects, healthy.

At her three month cardio visit, she had gained just three ounces. Her cardio doc wasn't ready to jump to surgery just yet--the longer he can wait so she can get bigger and stronger, the better. Either the holes will close on their own or she will physically be better able to make it through surgery and recovery. But growth restriction is one of the things that leads to surgery sooner :( So we need to get I to gain some weight! The cardio sent us off with a script for breastmilk fortifier, the powder they mix in for NICU babies to add calories and nutrients to get them to gain weight, instructions to take her in for weekly weight checks to make sure she doesn't start losing, and I needed to find a pump because hand expression wasn't going to cut it.

We ran into a few problems along the way:

1. The first few pharmacies I tried did not have breastmilk fortifier and did not know where to get it. The IBCLC I talked to didn't know where to get it. The RN and IBCLC at a local hospital didn't know where to get it. And it was the weekend so some people weren't even in the office so this particular mission gets shelved for a few days.

2. I start pumping in earnest and am doing quite well considering I have not been regularly pumping. I seems somewhat amused at all of it but has little interest in actually drinking expressed milk from the bottle, no matter who gives it to her. She has never much liked artificial nipples and it swiftly turns into an outright hatred. Now, she cries if she just sees someone pick up a bottle and that crying swiftly escalates into shaking and vomiting. Oy.

3. Her regular doctor fires her as a patient the following week. I guess he can't help us find the fortifier.....

4. We try dropper feeding. It is moderately successful but such slow going I am not sure it would be at all helpful in getting extra expressed milk in her. And then she moves into full-on hatred for that as well. Cue bottle reactions to the sight of droppers.

5. At the suggestion of an LC, I talk to a NICU nurse at the hospital where I was born. The fortifier I was prescribed is only available at hospitals and I will not be able to get it. The over-the-counter fortifiers on the market are not what we need. The NICU nurse says the best thing we can do is separate out the hind milk when I pump and just give her that to supplement. I like this idea :)

6. Meet with IBCLC and get set up with a SNS. I is irritate but agrees to nurse with it. Hurrah! Extra hind milk is delivered! And then the next time, she moves into full-on hatred mode for this as well. *sigh*

Just a few days after her doc fired her, I meets with her new pediatrician. Dr. A has had patients with heart defects before so she has some experience plus she herself is a breastfeeding mom so she is wonderfully supportive in that area as well. In her opinion, since I is stressing out so badly at any type of feeding other than nursing, we need to just nurse. Stressing and crying and throwing up is not going to help and she was in agreement with me that it wasn't helping, especially since I lost a couple of ounces over just the few days I had been working with her and trying to get her to take extra milk in various ways. Dr A thinks I's weight stall is mostly caused by her medications because she is very alert and active and even hitting physical milestones early.

I continued to pump, though, and am building up a freezer stash--this also gets I some extra hind milk since at least once a day I pump off some fore milk and then nurse her :) Pumping is also upping my supply so that it literally comes pouring out of my nipple once she gets things going--very little effort meals for her ;) A week later, she had gained nearly a half pound. The week after this, she started army crawling, playing her own version of hide-n-seek where she rolls from one side to another giggling every time I move out of her sight, grabbing toys on her playmate toy bar and pulling them towards her and then letting them go so she can laugh as they bob up and down. No weight gain that week but her ped is impressed by her newfound motor skills and how active she is. The next week, today, she is up another half pound. Hopefully Tuesday will see a little more gain and a happy cardio doc :)

Most of the time, it is hard to believe our little girl is in congestive heart failure. She smiles and laughs and squeals in delight most of the time. She loves to play with her big brothers. She is a cuddle bug. She will talk your ear off if you have time to sit and listen. She likes to stand and bounce whenever someone is willing to support her so she doesn't fall over. She now tries to escape by army crawling away whenever she is down on her play mat. She is so full of life and love and happiness and joy. Keep beating, little heart, keep beating.

2011-12-29T17:17:00.000-05:00

I was born just over three months ago, the smallest of our three babies, despite the fact that she was predicted to be much larger--her estimated weight at 35 weeks was just a few ounces shy of what she was when born at the end of week 38. The MFM clinic where I went to see the perinatologist had a pretty accurate record for weight measurements so it was surprising. But at 19 inches and seven pounds eight ounces, she was tiny and adorable and wonderful :)

we enjoyed twenty-four whole hours with her before they told us she had a heart murmur, one that was pronounced enough that they wanted her to have an EKG and an Echocardiogram and see a cardiologist before we even left the hosptial :\ They ordered the tests to be done on Saturday and said we'd see cardio on Monday since it was a weekend--I must admit, it scared me a bit when a nurse told us to expect cardio on Sunday. They sent over her tests and cardio said they were coming to examine her right away. eep.

She had a large VSD and a medium ASD, holes between the chambers of the heart. As she got older, oxygenated blood would flow through the hole and back into the other side of the heart instead of going out to feed the body. Her first month was pretty good--she gained two pounds, she was as alert as any other baby her age, she loved to nurse. But when we had her followup with cardio, her holes had not closed at all :( So it was back to waiting to see what her two month birthday would bring.

That second month saw her sleeping more and beginning to breathe harder. There was a hitch in her breath and it didn't come as easily. Her next cardio visit when she was two months saw her start medications--her heart and lungs were working overtime trying to compensate and her heart would race and her breathing become shallow and fast. The medication would flush out some of the excess fluid building up in and around her heart and lungs so she could breathe more normally. And we saw a big difference fairly quickly--she was more alert, she played more, she was happier. But she still slept more than my other two did at that age and that little hitch in her breath would come back when she had been up and playing for too long.

The first two months, when life was basically business as usual, it was easy to let her condition slip from my mind. She looked and acted like a normal baby. But fixing her syringes of medicine twice a day and having to watch for the list of symptoms that mean she has to be rushed to hospital are a constant reminder that she is not like every other baby. On an emotional level, it is hard not to spend large amounts of time wondering "what did I do?" I am told that the majority of heart defects have no known cause. I am not supposed to think it is anything I did or did not do to cause them. But its hard not to wonder--after all, I grew her inside me for all those months. She depended on me to make everything right for her and somewhere along the way, something, no one knows what, went wrong and that little heart didn't form all the way. But despite its problems, it sure does have a lot of love to pour out on me and her Daddy and her brothers. That smile of joy when she sees us goes a long way to ease the fears and worry :)

I have not been here in a long time.....

2011-12-28T23:13:00.000-05:00

Life happens and this particular blog fell by the wayside. I kept meaning to come back and update but time just got away from me. I briefly thought about deleting what was here and starting over since I would like to use this space to focus on working through everything going on with my daughter but decided not to. Even though there isn't much here, it is nice to remember that once upon a time, life was not an endless round of worry and fear and doctor's offices!

A quick overview:

My oldest is six, in first grade, and recently diagnosed ADHD. No, we are not taking any meds for this--he is getting some behavioral therapy at school and I am trying to get an appointment at a clinic about forty-five minutes away that also does behavioral therapy as we would like to make medication a last resort. I am open to medication in the future if necessary but with all of the not-so-great side effects that come with, we'd like to give the alternatives a chance first. However, his hyperactivity at home and at school certainly does make everything a little bit more difficult :p

Next up is the two year old. He's two. I'm not sure much more needs to be said LOL

And then there is our baby, three months old, in congestive heart failure due to two heart defects and an artery that isn't growing properly. We live month-to-month, wondering if this cardiologist appointment is the one where we have to schedule open heart surgery for our tiny little girl. She is on medications to help her breathe and at night I lie there and listen to the raspy little sounds she makes as she falls asleep until she is relaxed enough that her breathing eases and goes almost silent. I worry over every cough and hitch, wondering if now is the moment we rush her to the hospital. Sometimes I think my worry is out-of-place because overall, she is doing very well. She is alert and active and happy. She smiles and laughs and surprises doctors with how strong and ahead of her milestones she is. But she is barely growing and without her medications, her heart races and she struggles to breath. Her heart murmur from the blood flowing the wrong way through the holes in her heart is so pronounced you can hear it with your bare ear--instead of the steady thump thump thump, you hear whoosh whoosh whoosh.

People tell me often that they just KNOW she'll be fine so I shouldn't worry. In many ways, I understand why they say things like this--they desire to be reassuring, to ease some of the pressure and fear that worrying about a child with a potentially life-threatening condition brings. But they can't know, no one can, and sometimes it just makes me angry that they say such things. I'm sure I have been guilty of it in the past as well--you just don't think of it the same way before you are in the middle, you know?

Where did it all come from?

2010-08-24T21:39:00.000-04:00

We recently went on vacation--we took the boys camping. We had a lot of fun and the husband and I especially enjoyed the fact that it is so cheap compared to staying at a hotel :p Our tent was actually free through one of those debit card rewards points programs. We brought a cooler and bought food for meals for a fraction of the cost of restaurant eating. The husband found a camp stove for 5 dollars at the flea market so we didn't have to buy wood and build a campfire for every meal. Most of our entertainment was free--hiking, waterfalls, beautiful landscapes, parks. We had a great time and The Boy has memories that will hopefully stick with him :)

Before we left, we made sure the house was clean and ready for us to come home. But once we'd unloaded the car and unpacked the bags, you'd never know it. Where did it all come from? How did the contents of one very small car make such a mess? We've been back for several days and although there's been a lot of washing and putting away, its still a mess :p *sigh* Reality has come back with a vengeance!

Finances can really ruin a day......

2010-08-10T19:17:00.000-04:00

I'm the number cruncher of the family so I handle finances. I keep my husband in the loop by writing our daily bank balances on our whiteboard so he can see what we have available/saved. And I keep a handwritten ledger tracking the bill breakdown so he can see where his paycheck goes and get an idea of our monthly budget (I prefer to do everything online but he's a hold-it-in-your-hands visual kind of guy and if that's what he needs, I'll write it down!). Lately, I've also added not only the cost of our utilities but also our usage to the ledger so we can track what we are using. We've made some changes to our water usage and the new lower bill is awfully nice to see :) But the electricity is definitely not doing well--its been unusually hot and humid this summer and our air conditioners have been going round the clock instead of just being on for the very hottest days. Every day has been of the hottest variety :p

I don't really have a solution and that really bugs me. I'd like to turn off the air and use the fans but the humidity is one of my asthma triggers and I'd really like to be able to breath :p When it became evident that the heat & humidity was not going to let up, we attempted to replace our older air conditioner with a newer, more efficient model--but they are sold out. Unless, of course, we want a giant model that would involve cutting a hole in the side of the house because its too big for our windows ;) Oddly enough, when I lived in Texas, I rarely turned on my air. I lived in an area of low humidity and even the week where it was over 115 degrees every day felt great to me. Open the windows, turn on the ceiling fan and I was good. These days of humidity 70-100% really make me miss the dry heat of the southwest!!

A few days ago, we had a couple of day stretch where the humidity dropped low enough that I could breath and the air went off and the windows opened up. It was heavenly. We spent lots of time outside and enjoyed the fresh air and hoped the humid-streak had ended. Alas, it has not, and we soon had to flip the air back on. It can't last forever, though. Eventually we'll have some dryer days!