Bella Grace

2014-05-25T22:28:00.001-06:00

                                     I took it for Granted.

    The last two years have taught me so much. I’ve learned so much about myself. I’ve also realized how much I took things for granted. This isn’t to say that I am complaining or saying I’m not grateful for Bella or all she has accomplished, I’m just saying that I didn’t realize how many of the little things that came so easily to my older children I didn’t ever think about. When you watch your child struggle with every little milestone you pay more attention. You celebrate the things you once didn’t give much thought. When Ally sat up for the first time we were so excited but I never realized how instinctual so much of it was. The same with crawling or walking. Bella is pretty much stuck where we put her. She can explore her environment on a very limited basis. She doesn’t learn by mimicking behavior because she can’t follow me around they way my older children did. She is also getting to the point where she knows what she wants to do but is limited by a body that won’t allow her to do what her brains says it wants to do.        As we have been on our journey through special needs I’ve been thinking of all the things that my other kids did that I took for granted. Here is just a partial list of things I took for granted:

1. Being able to deliver a baby that was healthy and went home with me after 24-48 hours in the   hospital.

2. Holding my baby the moment she was born. Bella was a couple of weeks old when I had the opportunity to hold her for the first time and it was a terrifying and miraculous moment all at one time.

3. Watching my older children meet developmental milestone. Do you realize what all goes into sitting up or rolling over? I never thought about how easily these things came to our older children. There are days that I tell myself, “If Bella can just learn to sit up and interact with her environment that would be enough for me.”

4.'Eating. I never knew the heartache and helplessness that comes with watching your child be unable to eat.

5.Going to the grocery store without being in a frenzy about all the germs and hosing down everything with sanitizer. I took my son out when he was just a few months old to, gasp, Walmart right in the middle of cold, flu and RSV season! Who knew to be worried, not me!

6. Not being required to have an “unofficial” medical degree. I have learned more medical terminology and procedures over the last 2 years to last me a life time.

7. Being able to pack up at the drop of the hat and go camping, swimming, family outings, you name it. All those things that we did on a daily basis now require extra time, effort, and a lot of equipment.

8. Being able to go to the doctor’s office or the dentist or visit a hospital without it triggering PTSD in my child.

9. Talking. When Bella was born, her not talking was something that never entered my mind as something she wouldn’t do or would struggle to do. Oh how I want to verbally communicate with her!

10. Having full function of your body. Until Bella non of my children struggled with physical disability. Watching Bella in therapy struggling to hold her left hand open, hold her head up, extend her upper back, clap her hands, sit, roll over, etc. is heartbreaking and yet at the same time joyous beyond measure!

Nothing in this world or out of it would make me trade Bella. She is who God intended her to be. I’ve learned lessons from her that I wouldn’t have learned any other way. She has brought our family closer in so many ways. She has made me appreciate and be more aware of the blessings I enjoy with our 3 older children. She has taught us to enjoy the small moments. To let go of the things that we don’t have control over and rely more on the wisdom and direction from our Heavenly Father. We have witnessed miracle after miracle not only with Bella but in the lives of others that we have been blessed to meet because of her. I think of the people I am now honored to call friend that I wouldn’t have known without Bella.
That said I am all too keenly aware of the things that prior to 2 1/2 years ago I never gave a moments thought to. I hope we take the time to celebrate the little things more. To relish in the beauty of life and give thanks for the small things that seem so common that we sometimes forget how miraculous they really are.

Bella update

2014-04-03T12:57:00.001-06:00

I said I would be better about blogging and I haven't been. The only excuse I have is that, well, life is busy! Things are good. For the first time in a long time there are no surgeries in the near future and no medical issues causing us major stress. We are finally just getting to enjoy life and what our new normal is. Knock on wood and lots of prayers it stays that way!! Now I'm not saying there is no stress or worry but it isn't like it was when we were dealing with head surgeries, failure to thrive, g tube surgeries, and eye surgeries. Now we worry about our house not being practical for a growing child with multiple disabilities and well as the fact that the equipment that goes with said child is getting heavier as well.

Bella is really doing well. She currently has a fever and isn't feeling well but other than that things are good. She weighs 23 pounds and is about 32.5 inches long. She was growing so good in fact that we had to reduce her calories. That was something I thought I would never hear about Bella. She was actually gaining weight too fast....go figure! She is still 100% tube fed and while I want her to eat by mouth, I don't stress about it too much anymore. It is such a relief to be able to get her the nutrients she needs without it consuming my entire life. She is also now big enough to be forward facing in her carseat and boy does she love it. Now we can't go anywhere without a DVD playing. She loves to smile and laugh and wait for it............she has started saying words!!!!!!!!!!!! Can I be more excited? I think not!!!! She says: mama (music to my ears), dada, nana (for granny), bebe, aa (for Ally), aba (for Abby), bubble, and more. She hasn't quite figured out Dallin yet. She is still working hard in therapy and we are getting closer to sitting up. She loves the water!! And will let you walk her around everywhere until you feel like your back might break from being hunched over. She also loves to swing.

I finally feel like we are leaving the world of extreme prematurity and entering a whole new journey of adjusting to special needs and all it entails. The details of her birth will always be overwhelming and scary but they don't dominate my thoughts anymore. As always we appreciate the prayers and encouragement from you all!!

All things Bella

2014-02-04T15:48:00.000-07:00

Just a quick update on all things Bella.

Weight: Is around 22 pounds
Height: around 33.5 inches

We are doing pretty good. 2014 has started off better than 2012 or 2013 did. We aren't in the hospital like we were in 2012 and we don't have several impending surgeries like we did in 2013.

It has been fairly quiet around our house with just the usual activities. We do therapy and...well more therapy. She is getting PT/OT 3 days a week and 2 days of speech and some feeding therapy here and there.

Bella is still all tube fed but is getting better about letting me put her Nuk brush in her mouth. I tend to be better about updating Facebook but will try harder to put the fun and exciting things our little miracle is doing here as well.

We always appreciate prayers. And thank you for them as well.

Right now one thing we are focusing on is finding a way for Bella to communicate with us better. Her understanding is totally there but she isn't able to tell us what she wants and is starting to get frustrated. The hard part about this, is that we aren't dealing with just one disability. Bella is very involved with her motor (movement) and also has CVI and other vision problems. We had once thought that sign language was a good path for her but we are realizing that with just the use of one hand (old leftie doesn't participate much) sign language isn't going to give her a very usable vocabulary. Although she does sign more, yes, me, and please consistently. We are looking at a picture board but then her vision becomes a problem. SO I'm not sure what we are going to do but I know God will give us the direction that we need.

I still can't believe she is 2. It really does feel like it was just yesterday that we were in the NICU.

Bella inspires and amazes me every day. Thank you for following us on our journey!! We love you all!!

LOOK WHO'S TWO--BELLA GRACE!!!!

2013-12-18T07:56:00.001-07:00

Bebe and Bella checking out the cupcakes

Beautiful Birthday Girl!

We kept it simple but it was JUST right!

That smile never get old!!

Bella getting some love from Daddy!

Bella hanging with dad and Abby and Dallin

It's the Price clan!

Mom and Bella!

What? You want me to do what?

She liked unwrapping gifts this year.

Gifts that help me learn!!

It's the birthday cupcake.

If I look away I can pretend it's not there...right?

Epic gag on the frosting! A BIG no thank you!!


But......I'll eat ice cream!!!!!!!

Bella is 2 tomorrow!!

2013-12-10T18:44:00.001-07:00

I can't believe that in a few hours Bella will be 2!! Can it really have been 2 years ago that our lives changed so dramatically? I have had a rough month. This birthday has been harder for me then her first. On her first birthday, after you adjusted her age for prematurity and then considered all the surgeries she had gone through, she wasn't really that far behind on what you would expect her to be doing. This year, however, we still aren't sitting, or talking, or eating, or....you get the idea. Don't get me wrong she has accomplished so much this last year, it truly has been amazing. BUT she is now over a year behind in most developmental milestone and that is hard. It is agonizing to watch your child struggle everyday to do things that should be so easy (like catching or righting yourself when you start to tip over or holding your head up). Being sad about this doesn't negate my gratefulness for everything she is doing. Never at anytime will you hear me say I'm not grateful but it doesn't mean that my heart doesn't ache for all the obstacles she has. I secretly in my heart hoped that by two she would have been one of those babies who beat the odds. One who walked away from extreme prematurity with little if any lasting disabilities. Reality and acceptance of where we are now comes slowly. Sometimes I take one step forward and then 50 back in my coping ability. Sometimes it seems surreal to think I am now doing the one thing I never imagined I would be strong enough to do. It is hard to not stress about where we will be in 5, 10, 20 years. I have to keep reminding myself to live today and enjoy each moment, not only with her but with each of my children and my husband.

Everyday this month I have found myself saying, "Two years ago I was..." Constantly reliving the events and days prior to Bella's birth. As a mother of a preemie I live daily with the guilt that my body failed her. She was cruising right along and it was a problem on my side of things that triggered her immediate and frightening birth. As I watch her work so hard in therapy the guilt, at times, becomes unbearable and I want to break down and cry. Today has been especially hard because I keep thinking "what if". What if I hadn't gotten out of bed so many times that day? What if I had demanded the steroid shots earlier? What if her birth hadn't been so emergent, would she have had such a massive brain bleed? What if, what if, what if. I know logically that I can't play that game but sometimes my heart just can't help it.

So in an effort to find the right perspective I have been saying, "What if I hadn't already been in the hospital the night she was born? What if my doctor hadn't come to the hospital to check on me and decided to stay a few hours to make sure everything was stable?" I'll tell you where I would have been and that is not here raising 4 beautiful children and loving one amazing husband. I'd be watching from heaven. I think with time it has become clearer just how close both Bella and I came to not making it. As I look back at the night she was born I can see God's hand so clearly. He made sure everyone was where they needed to be at just the right time.

Tomorrow will be a beautiful day! Bella is my proof that God still sends miracles. Because of her I have realized just how many miracles we have been given. I look at my older children and see the amazing miracle that each of them are. That I was able to carry 3 pregnancies to term and deliver 3 healthy babies is now miraculous to me. How lucky I am to have all my children here with me!!

So as we count down the hours until December 11, I choose to celebrate!! Celebrate the little girl who's laughter brightens the darkest of days. The little girl who has taught me so much about my Savior and Gods loves for me. The little girl who has strengthened me in so many ways. The angel that got to stay.

2013-11-21T20:03:00.003-07:00

We made it home from Salt Lake. It was a great visit. The neurosurgeon was very pleased with Bella's MRI. It looks as good as it can with half of her brain missing on the right side. Her ventricles are still large but that is because of the brain loss. Her ETV is working great. In fact the MRI showed it so clearly that he asked if he could use her scan for teaching purposes. He said that unless something unusual happens he doesn't need to see her for a whole year!!! The eye surgeon was also very happy with how Bella's eyes look. They are still positioned correctly and he lowered the prescription on her glasses. I'm glad it's done and we are home. I always prepare myself for the worst when seeing her MRI. It never gets easier to see the giant black holes in her brain. BUT Matt and I were listing things she can do and here is what we came up with.
She knows and can point to:
hair
ears
eyes
nose
mouth
tongue (she sticks it out)
cheeks
chin
belly
tubie (yes we taught her she has a belly button and a tubie button and she can point to both)
toes
hands
finger
she knows where her diaper is.

She consistently uses sign language for:
yes
no
more
me
up (she invented her own sign for this but you know what she wants)
and we are working on please, thank you, all done

She rolls to get places now. She laughs, gets sad and cries (especially when I sing Twinkle Twinkle Little Star), and she gets angry (mad enough to bite her own hand).

She is close to sitting and loves to stand and walk with someone holding her.

She has come so far and we are so proud of her. We also want to thank Granny and Aunt Bebe for watching the olders kiddos. I also know that Bella benefits greatly from all the love and stimulation she gets from her brother and sister. And thanks to all of you, our family and friends for all your prayers, positive thoughts, and kind words!!! We feel so blessed!

All things Bella

2013-09-27T19:40:00.002-06:00

Here it is almost October and I haven't kept up on the blog all that well. Here is the run down of Bella the last few months.

I think the biggest news we have is....her weight.

Weight: 18lbs 8oz (up from 12lbs 11oz in May)
Height: 30 inches (up from 27 in May)

She actually has rolls. I am SO excited!!!

One major bummer of the last few months is that Bella has decided that she won't eat by mouth anymore. In a matter of a few weeks she went from 100% oral fed to 100% tube fed. The doctors and therapist can't explain it, other then to say that she is acting age appropriate (in telling us she was tired of the bottle and the nasty formula). This has been a huge disappointment for me. Her eating orally has always been the one thing she did well, so for her to loose that was devastating to me. However, her growing and getting the proper nutrition trumps those feelings. She still has massive reflux and can vomit when the mood strikes her. But it is way less than before so thank you nissen!

We go back to Salt Lake City in November for another MRI and a follow up with the neurosurgeon and eye surgeon.

Bella refuses to wear her glasses and I haven't figured out a way to keep them on her so I pick my battles. We see a specialist from Denver's Anchor Center every 3 months and I am encouraged with what she has to say. We were told again today that Bella has enough functioning vision (without her glasses on) that they are confident she will be a visual learner!

We were able to cross one specialist off our list this week. As of Thursday, Bella was released from the heart doctor. Bella's heart is a picture of health!! What great news!!!

I get the question a lot "Where is she cognitively?" That is such a hard question to answer. Because Bella is so involved physically it is hard to "test" her on things. Who realized how much we use our body to demonstrate what we know mentally. My answer to that question..... She is pretty delayed but making great progress!!

We recently started speech therapy. We were told that for speech Bella is at a 6-9 month level. Not to shabby for a little girl with her history!!

Therapy is going well. We have a Stander for Bella now in addition to her chair. This helps her learn to bear weight on her legs and lets her view the world from a different perspective. She rolls both ways now, which is exciting. We are getting ready to Botox her legs soon. Hopefully this will break up the spasticity in her legs enough to let her learn to sit and stand better.

Things she knows. Bella knows where her hair, ears, nose, lips, tongue, belly, toes, and finger are. She will show you these on command. We actually taught her how to pick her nose.....don't judge. It was the only way I could get her to show me where her nose was. She is starting to learn her colors. She can also take things out and put things in a bucket. She plays patty cake and peek a boo. If you cover a toy she will remove the cloth and play with the toy (this is huge).

She will growl at you when she is upset and sometimes will even bite herself. She knows how to tell you no no no (and does this quite frequently at therapy). We are working on sign language and the sign for "yes". She is quite vocal some days (especially with her siblings).

I think that is it. Bella in a nutshell.

Bella update!

2013-08-01T16:41:00.001-06:00

Here it is, August 1st and I have been terrible about keeping this updated. I really do better with Facebook. But here is Bella in a nutshell.

Weight: Tuesday she weighed in at 16lbs 8oz. Remember 3 months ago, prior to the gtube/nissen she was 12lbs 12oz. So almost a 4lb weight gain in 3 months. Not too bad!!

Height: She measures at 29 inches. Prior to the gtube/nissen she was 27 inches. So almost 4lbs weight gain and 2 inches.....again, not to shabby!!

Head: We go back to have a sedated MRI in November of this year. Her neurosurgeon thinks things look good (as good as things can look when half of your brain is missing). He said he is pretty sure that Bella won't ever need a shunt.

GI: This has been our toughest challenge the last few months. Bella had a gtube/nissen surgery on May 7, 2013. It took forever to heal and we had SO much trouble with granulation tissue. She was in constant pain. Finally we got the surgeon to agree that something wasn't right. He took her back to do a scope and make sure that everything in her throat and tummy looked good. While he was in there he cauterized all the granulation tissue and put in a new button. Since then, her tube hasn't bothered her one bit!! She is back to rolling over on her tummy and doesn't even seem to notice that the tube is there. I wish I could say we have had all good news in the GI department BUT not so. About 2 weeks ago Bella got sick. She ran a fever for about 4 days and then developed a nasty cough. During this time she took less and less volume by mouth, which means we were tubing more and more through the gtube. Until one day she just refused the bottle all together. So now we are battling to keep her orally eating while balancing using the tube so she can keep growing. Thank goodness for a wonderful therapist!!!

Motor skills: Bella is so close to sitting!! She can roll over from her back to her tummy but then gets stuck. Really, she is pretty far behind in the motor skills department. She is still at a 3-4 month stage. We have recently gotten her a chair that helps her sit. She loves it because she can be more involved with what is going on around her. At first I cried at the thought of her needing the chair because it is so medical and just one more reminder of how much she has to overcome. With that said, I LOVE this chair!! It gives her the independence she so clearly wants. She is working hard in therapy and I think the next thing on the list to get is some braces for her legs and her left hand. She will more then likely be getting some Botox soon too.

Cognitive skills: Bella is one smart little cookie. She know where her hair, ear, nose, tongue, lips, and belly are. She gives kisses and will blow you a kiss too. She waves bye-bye, and waves her finger at you to say no no. She also plays patty cake. She will play peek a boo and laughs at her older siblings all the time...yes, they are pretty funny.

I'm sure I am forgetting things but wanted to get this posted. We always welcome prayers and positive thoughts. Thank you for following our miracle!!

Bella loves listening to music!

Mama and Bella

Bella's new chair

Update plus post-op pics

2013-05-07T17:26:00.001-06:00

Still trying to wake up completely from anesthesia but it's a battle anyway you look at it- when awake she's trying to whip off her IV & arm board keeping her arm straight. Or she's crying/moaning because she's hungry & cannot eat yet. Doctor says the tube will be clamped tomorrow in the early am, then residual in her belly will be checked after about 4 hours. Then if everything looks good she will get to eat. Please pray that is the course.
I've included some post op pics with this post. Thank you so much for the prayers & positive thoughts!

Surgery day-May 7th, 2013

2013-05-07T10:23:00.001-06:00

Well, just a quick update- the OR nurse called out to say they expect Bella to be out in another 30-40 mins. She only went in about 10 minutes late. She started the day with eating about 2 1/2 ounces of Pedialyte at about 5 am, then got really mad in pre-op when she was placed on the cold, hard plastic scale for a weight check (12 lbs, 13 ozs), started urping which then hit her very sensitive gag reflex & then launched it up, of course! So, that tummy of hers better be empty!
I've included some pre-op happy pics so we can compare for after when she awakes grumpy from the anesthesia.

Nissen/G tube surgery

2013-05-03T15:55:00.001-06:00

After much thought, many prayers and buckets of vomit, we have decided to have the g tube and nissen surgery for Bella. We don't go into this lightly and have spend months going back and forth about what is best for her.

Bella's reflux is so much worse. She is miserable and we are miserable watching her reflux and puke so many times a day that we don't even keep track of it anymore.

Our plan is to use the g tube only for "burping" Bella. She likes to eat her bottle and if we never put one feeding through the tube, that's fine with me. I also like knowing that if she gets sick or has a day when she isn't interested in eating we have a back up method. I am more then ready to not have her vomit multiple times a day. I look forward to taking the back out of the car that has 8 outfits for her, blankets, and a change of clothes for me.

I hope this surgery will help up in someways reclaim our life. I am so scared to take her anywhere for fear that she will get upset or gag and empty her stomach content in a less then desirable location.

Her surgery is scheduled for next Tuesday, May 7. We would appreciate your prayers. And as always many thanks for all the love and support you give us!

Bella's tent

2013-04-21T08:39:00.001-06:00

We set up a make-shift tent today to help with Bella's eye sensitivity to bright light. It was a bright & sunny morning today after a crisp cool rain last night.

Post surgery pics

2013-04-19T23:14:00.001-06:00

Pics

2013-04-18T00:37:00.001-06:00

Daddy keeping light outta Bella's eyes post dilation (prior to surgery)

Bella in carseat waiting in check-in

Bella & daddy enjoying a nice spring day (before all the snow fell)

Bella helping daddy in the garage last week.

Post Strabismus correction surgery April 17th, 2013

2013-04-18T00:33:00.000-06:00

Well...once again it's been awhile since we posted on the blog and are trying to do better at this.

Today was Bella's eye muscle correction surgery...ya know the one where they straighten out her cross-eyes.

Just to get you caught up on most everything else first....

Neuro: still good, progressing with sounds and actually sees pretty well. No shunt. Soft spot is closing but still concave. Bella continues in therapy to improve her muscle tone, but is still not strong enough to sit up on her own yet. She can however, (& does this quite often), roll over to her belly in seconds flat after being placed on her back on the floor. She prefers to roll to her left to get to this position.

GI: The Neocate Jr with Prebiotics lasted roughly a month before she yep, you guessed it, started launching again. We have now started her on the Ellecare powder formula and so far has been less "urpy" but occasionally will still lauch up. If you tick her off, or if another child/baby is crying, Bella is an empathetic cry-er and so she starts crying, then urps, then gags, then lauches. She's still taking Prilosec, we have begun her on some Erthyromycin to assist with gastric motility, she still takes Miralax daily to help with BMs and she will get an occasional dose of Carafate to help coat her esophagus when the reflux is unbearable (mostly to us parents-seeing her urp and gasp is no fun). Oh, and her last weight check at the office netted 12 lbs 11 3/4 ozs. She is now up to a stunning 26 inches in length. Oh, and one more thing, the G-tube is back to a very serious consideration...but after witnessing what she experienced today...another surgery...another date with anesthesia...seems unbearable....

So back to the present day and time: Bella was a happy go lucky girl in the pre-op waiting area today, even did well when we handed her off like a football to the very wonderful Anesthesiologist (who commutes to Primary Childrens from Colorado Springs by the way). The surgery went "as well as it could have" per the Eye Surgeon and lasted roughly 1 hour. Becky got to go back to be with Bella during 1st stage recovery and I got to join them shortly thereafter (about 2 hrs after surgery start time) in stage 2 recovery which lasted well past 5:30pm (surgery started a little before 1pm) when the nurse came to us with an O2 tank- we placed Bella on a nasal cannula at 1/8 of a liter of O2 (up to that point she had been on blow by) and we prepared to take her back to the hotel room to stay in town for the night just in case. Well, we had been getting a little uneasy for a couple reasons: 1. Bella was not able to return to baseline O2 saturation levels w/o the oxygen (expected right? she has chronic lung disease), but she was not really waking up or opening her eyes (who'd blame her, they'd just had them propped open for an hour in the operating room doing a thorough exam and cutting into her eye muscles). So needless to say when the Resident and Anesthesiologist showed up talking about keeping Bella in an observation room, we were not at all surprised. Unhappy? Maybe a little, but Becky definitely felt more comfortable staying at the hospital so they could keep a closer watch on Bella. In the midst of all this recovery time, the nurse had reviewed discharge instructions with us and they all did an excellent job taking care of all 3 of us. So, here it is after midnight: Becky is sleeping in a hospital bed next to Bella, who continues on 1/8 liter of O2, still will not open her eyes, and she is not eating as good as you think a starving, hungry little girl would....but COMMON! This is Bella we're talking about! She doesn't follow the rules, she doesn't do it the textbook way, or even the normal way. She's a premie, still struggling to break free from the textbook premie problems. Patience? You betcha!
The frustrating part (and I was able to vent this to Becky before I returned to the hotel room) is that the eye doc spoke as if this surgery is "no big deal" in the pain department. I beg to differ and told Becky, maybe he should come take care of a child post-op over night to actually experience caring for that child as he/she wakes up from Anesthesia and will not open his/her eyes due to the sensitivity to light or blood shot/ blood stained eyes. Then, maybe he could relay a bit more information pre-op to prepare the parents, no matter what profession they are, allbeit they be health care professionals....

WOW! Ok, I said it....or wrote it. Now, I pray forgiveness for my unorthodox thoughts, but more importantly....pray for Bella that she has a restful night, recovers completely from the after effects of the anesthesia to her body, and Becky, her, and I tolerate the long 5 hour trip (with multiple stops) back to Grand Junction tomorrow (which as you may know got over 3 inches of snow on Wednesday-likely and hopefully it will be all melted before we return).

Right now- I want to give a shout out to my mother in law Suzie Q and sis-n-law Beebs for doing outstanding work with our other 3 children- Ally, Abby, & Dallin, while we are over here in Salt Lake City. I want to give my father Brent a big thanks for helping me give Bella a blessing on Tuesday night. I also want to say thank you to my staff (including Monica) back in the Community Hospital ICU & entire hospital staff for the positive thoughts and prayers for Bella and our family.

We don't have any post-op pics, but I do have a few recent pics to add to this blog.

I really am trying my best to take lemons and make lemonade, so please continue sending the positive vibes my way!
-Matt-

MIA

2013-03-18T16:19:00.000-06:00

So, we have been MIA for a few months. My heart had many moments that it wanted to update the blog but I just never seemed to make it to the computer. Life has been crazy. Here is a quick run down on all things Bella.

Current weight 12lbs 6oz (she gained 1 lb in 10 days)
length is 25.5 inches

Neuro: Bella is still shunt free. Our next appointment in Salt Lake is in July. I don't worry so much about the hydrocephalus anymore. We had a couple appointments with the neurologist and while she was a very nice person and oohhed and awed over Bella, I have no desire to see her again. Why, you might ask? Because she got to be the bearer of difficult news. Because of the bleed Bella had in her brain at birth, she is now missing about 1/2 of her total brain volume. This sweet doctor gave us this news as well as the diagnosis that Bella has moderate spastic quad CP. Is it becoming clearer why I might want to avoid seeing her again? As long as Bella remains seizure free (she is at high risk for seizures) we will only have to see Dr. Green once a year.

Eyes: Bella will be having her first eye surgery in April. This surgery is to align her eyes, which will hopefully help her eyes and brain work better together. We have seen some improvement in her CVI which is reassuring.

GI: Poor Bella has been through the ringer with getting the right food for her to grow on. Bella was labeled failure to thrive and we had actually scheduled surgery to place a g-tube. We tried her on Pediasure which was a big no go. Then switched to Pediasure Peptide (protein is more broken down) this lasted about 1 month before she was throwing up all the time. It is my diagnosis that she does in fact have a milk protein allergy. She is now on her 3rd week of Neocate Jr. she seems to be handling it well (hence the 1 lb gain in 10 days). The g-tube as been postponed until we re-evaluate in May. Prayers are that she will keep eating the Neocate and grow, grow, grow.

Therapy: We love our Missy!!! Bella now goes to therapy 3 times a week. Twice for PT/OT and once for feeding therapy (trying to get her eating solids). Progress seems very slow to me. It seems like we make a good stride and then Bella gets sick and we start over. She still isn't sitting on her own. She can roll back to belly but then is stuck there until a) someone takes pity on her and rolls her over or b) she goes to sleep. She still doesn't push up on her arms when she is on her tummy. BUT her legs are not as tight. She is sitting supported better and her head control is coming along. PATIENCE is SO hard!!!

We are gearing up for the March of Dimes walk. We are also working on the "Because of Bella" project. My goal is to update at least here monthly.

How you can help.
We always appreciate prayers. Specifically that eye surgery will go well, that Bella can continue to eat well and grow (hopefully without a g-tube), and that she will respond well to therapy.

As always, thank you!!!

Neuro and Eye appt news

2013-01-13T16:13:00.001-07:00

We had a recent scare with Bella and her head. She had been vomiting more and was irritable and didn't seem like Bella, so I sent an email to her neurosurgeon in Salt Lake. This was done, intending to update him on all things Bella....I didn't expect an immediate response telling me that he was moving our appointment up from the 21st to the 9th. So we made a rushed trip expecting Bella to need surgery on her head. She had an MRI prior to seeing her surgeon and we got good news. The following is what I posted on Facebook. So now we can be all caught up.... :)

Prayers have been answered! Bella Grace will not be having surgery tomorrow! Her ventricles are still very large but the neurosurgeon said there is no intercranial pressure and putting a shunt in wasn't going to change anything crucial to Bella's development. Her ETV is still working and the MRI showed good movement through the ventricles. His exact words were, "I'm tempted to say that no shunt will be necessary". He felt so encouraged that we don't come back for 6 months. So now I just need to get the picture of her brain out of my head (trust me it is frightening to see that your child, in essence, is missing half her brain), and focus on Bella and how to help her be what God intended for her. On a side note, he did encourage a g-tube so we can maximize Bella's brain growth. So that is our next big question and what we will be praying about. Thank you all for your love, support, and prayers for our little miracle! We are so blessed!

Another Bella update. We saw her eye doctor this morning. He said her optic nerves weren't swollen, which is good. That mean her large ventricles aren't putting pressure on her optic nerves. He did say the time has come to do surgery to straighten her eyes. He hopes by doing this it will help Bella's brain and eyes work better together. He said it would probably take 2 surgeries to keep the eyes where they are supposed to be. So, surgery #1 is scheduled for March 22. Bella seems to be recovered from the anesthesia from yesterday and we are on our way home. I can't wait to see my other kiddos!

And one more update....
We will be headed to Denver on the 21st to meet with a GI specialist. We need to figure out why Bella isn't eating as well as she should be and why she isn't gaining weight good.

2013 Goals

2013-01-01T17:59:00.003-07:00

Bella Grace has some goals of 2013. She may not know it, but she does....her mama says so!!

Goals:
1. chubby up (preferably without needing a gtube).
2. Not need any more surgeries on her head (or anywhere else for that matter).
3. to sit up by herself (and any other milestones she wants to throw in there...the more the merrier in this mama's book).
4. to start making noise (I know I pray for a noisy kid.....)
5. teach mama patience.
6. teach mama to enjoy the moment.

Ways you can pray for our sweet Bella Grace:

1. For her head to continue to heal and that she won't need any more surgeries.
2. That she will be able to eat better and gain some good weight. Especially as we are trying to transition her from breast milk to Pediasure.
3. That she will respond well to her therapies.
4. That her eyes will continue to improve.
5. That we as a family will have the patience we need to allow things to happen in the Lord's time. We don't wait well sometimes.

As always, thank you for your prayers and support! We love you all!!

Reflections

2013-01-01T17:49:00.004-07:00

2013....When did that happen? I swear we were just sitting in the NICU with Bella wondering what the future would have in store for us. Well, now here we are over a year later, and guess what, I am still pondering that same question. What does the future have in store for us as a family and for our Bella Grace?

2012 has been a year of joyous moments and minutes of sheer agony. We have watched our daughter struggle to do the simplest of things. We have had to make hard surgical decisions regarding Bella, more then once. We got real acquainted with medical terms like: ETV, septostomy, choroid plexus coagulation, spastic quadripalegic cerebral palsy, cortical vision impairment, RSV, Synagis, developmentally delayed, feeding difficulties. IVH, brain loss, PVL, CLD......the list could go on and on. We have had to try and start to come to terms with what it means to be a parent to a special needs child.

BUT, we have watched that little 1 lb 9 oz miracle defy so many odds. We watched her struggle to get of the ventilator and learn to eat so she could come home from the NICU, and although it was tough, she did it! We have seen her go through multiple head surgeries and come out smiling, teaching us what true strength looks like. We have watched her grow, and wean down on needing supplemental o2. She has made huge improvements with therapy. She has taught us how to enjoy each little accomplishment. Bella has a smile that will warm your heart no matter how bad life may seem. And even though we are struggling to get her to eat and gain weight, she is eating! Something they said she would never do. We have watched as one doctor after another looked at Bella in awe. They are amazed at how well she looks and the things she is doing. This is huge considering what her medical chart looks like.....not to mention how scary the images of her brain look.

I'll be very honest, I have bad days. Days that I wonder how I'll ever get through another minute or one more piece of bad news. Weight checks that show she has lost more weight. Head ultrasounds that show enlarged ventricles. Days that I wonder why she has to struggle with every little thing. Times that I fall down in a heap of tears and plead with God to heal her. Nights when I sob about the "unfairness" of it all. Moments when I beg to take away some of the challenges that she faces. Days when I can't get past the phrase, "Why her"?

But through it all, God is right there. Sometimes He sends those moments of quiet peace. Often He shows his love through others, who reach out exactly when I need them. Sometimes, He doesn't say anything, letting me cry, beg, plead, rage and then He reaches out and whispers that it will all work out in His time. Even when I push Him away, He lets me know that He is never going to really leave me. I can't even begin to describe the love I have for my Father in Heaven and His son, Jesus Christ. Because Christ died for us, I know that Bella can be healed. Maybe not how and when I want, but one day all things will be made right. While this knowledge doesn't make it easy to deal with fighting to get Bella to eat and gain weight and it doesn't make my anxiety of her upcoming trip to Salt Lake go away, it does give me the courage and strength to take another breathe and continue on. And for now, right here in this minute, that is enough.

Merry Christmas

2012-12-25T18:54:00.000-07:00

I have to say this Christmas day was a lot more enjoyable then last year. At this time last year we were trying to divide our time between our kids at home and Bella who was 2 weeks old in the NICU. By this time in her short life we had already been told to prepare to let her go. We were still playing the minute by minute game and dreading every time the phone rang, worrying it would be the hospital with bad news. We were watching our little girl struggle for each breath.

Today was completely different. Bella is home and a whopping 11.8lbs. She is breathing good and trying to get better about eating. She smiled and played with the wrapping paper. We were able to gather all four of our children around the Christmas tree and enjoy being together as a family, no rushing to the hospital! We stayed in our pj's all day and munched on goodies. It was just how I wanted to spend the day, with my little family.

This last year has been hard for me and yet at the same time one of the most spiritual years of my life. Because of Bella, I have come to know my Savior in a way that I never probably would have without her. I learned more about what the Atonement means to me in my life. I have come to appreciate the gift Christ gave to each of us through His birth and His death and resurrection.

I still struggle with the "whys" sometimes. Why the early birth? Why the struggles to reach milestones? Why the cerebral palsy? Why the trouble gaining weight? Why her?

But then I remember that God knows Bella. He knows what she is capable of. He sees the eternal plan for Bella. He sees what we can learn from having her in our lives.

My goal for 2013 is to not ask why. But ask "What can I learn". I want to never miss an opportunity to revel in the miracle that Bella is. I want to rejoice every day in her smiles. I want to hold her close and help her become who God intended her to be. I want to help all my children reach their potential. To remind them, that they are great in the sight of God, and to their parents. I want to take each day to teach them about Christ and that through him all will be made right. Maybe not in our time but absolutely in His time.

I 2013 to be a year of service. I want to give back to all those who reached out to our family this last year. We have been so blessed to have good friends and family who love and support us. May we all have a blessed new year!!

Merry Christmas from Bella Grace and the rest of the Price clan!!

12-11-12 Happy 1st Birthday Bella Grace

2012-12-22T11:24:00.002-07:00

Guess who is 1? Yes, our sweet Bella Grace has been with us for a year now.

We had a great day with our miracle. I can't believe it has been a year since she came into our lives (4 months early). I have learned so much in the last year. We have closer as a family. I have discovered things about myself that I wouldn't have if we hadn't been through everything this last year has brought our way. I have come closer to my Savoir and have learned more about the atonement that I probably wouldn't have learned any other way.

Bella had a wonderful day. She started it by hanging with our therapist, Missy. We tried cupcakes at therapy but Bella just gagged. Then we spent the day snuggling and thinking about the last year. I will be honest I cried some as the memories of the first few weeks of her life came pouring back. Then, we had a small party with family. Again, Bella wasn't too fond of the cake but loved her sucker.

We are so blessed to have her here with us. I am so thankful she got to stay on this earth. She has come so far and overcome so many odds. I won't lie and say it has been easy but she is so worth it! We look forward to every day with her and our other kids.

See how far I've come.........

Bella and her sucker

Who needs a cake when you have a peppermint sucker?

Mama and Bella snuggling on her birthday

Spoiled with gifts and loves on her bday

Rockin' her glasses

Funny Bella with pigtails

Bella Update

2012-12-22T11:05:00.001-07:00

Can you believe it has been a year since precious Bella came into our lives, 4 months before she was suppose to? It has been quite a year full of ups and downs, but through it all I am reminded everyday of the miracle that lives at my house.

Bella in a nutshell:

Weight: 11lbs 8.5oz (it doesn't sound like much but when you start out at 1lb 9oz that isn't too shabby)

Height: 25 inches up from 12 inches at birth. Again, not too bad.

Head status: We go back to Salt Lake in January for a MRI. Depending on those results, Bella may be having surgery. At this point I am not sure if he would put in a shunt or redo the ETV (endoscopic third ventriculostomy). I am hoping it would be the ETV. Her right ventricle is still too large but some of that is because of the brain loss from the bleed spilling out of the ventricle when she was just a few days old.

Lungs: Bella is still on o2 at night. She is doing much better then we first anticipated. She is currently getting the Synagis shots (which helps her fight the RSV virus). We are hoping my summer time that she will have kicked her o2 habit all together.

Heart: Her PDA is completely closed. We have a follow up with her heart doctor sometime next fall.

Hips: We saw a pediatric ortho doctor last week and were given the good news that Bella's hips are developing just like the should. We worry about her hips and her spine because of her cerebral palsy (Bella has cp that affects all four limbs and her trunk. She is high tone or stiff in her arms and legs and weak in her abdomen and neck). We go back in a year for a recheck.

Eyes: Bella does have some significant eye problems. In the NICU she had ROP which has resolved. But she does have Cortical Vision Impairment (this is a neurological problem. Her brain can't interpret what her eye is seeing), hopefully this will get better with time. She also is suppose to wear glasses to correct her vision (but the little stink won't leave them on). The eye Doctor was hopeful that Bella would have fairly normal vision (with glasses of course) but he couldn't say if she would see well enough to drive....time will tell.

Tummy: Bella still isn't the best eater in the world. She is what they call a "low volume feeder". We have tried about every supplement in the book trying to get her to gain weight better. Currently we are adding formula to her breast milk but are hoping to switch to Pediasure. (She recently had a rash and we aren't sure if it was from her vaccines or from the Pediasure so we are giving it a couple days and then trying the Pediasure again). She is also on Mirilax in an effort to help her poo on a more regular basis.

Therapy: Bella is currently doing PT and OT. We love our therapist. She has made great progress with Bella. Bella will also be adding speech therapy to the list soon.

So now you have way too much information about our sweet miracle. Overall, she is doing well. We have come such a long way in a years time. It is still a rollercoaster that we can't get off of but I wouldn't trade my sweet Bella Bird for anything.

Update

2012-12-06T07:38:00.001-07:00

Well, we celebrated Bella's first Thanksgiving. She tried the mashed potatoes...and gagged. It was a good day. As I snuggled with my kiddos and my sweet husband, I truly felt so blessed.

Bella continues to play the weight gain rollercoaster. We have a week of gaining followed by a few weeks of either losing or staying the same. Even though I try not to, I constantly obsess about her eating. Currently she is at 11 lbs 5 oz.

We did get her glasses. I wish I could say she loved them and wore them all the time. But...no. The little cutie doesn't like them at all. We can get her to wear them about 5 minutes if we are lucky. She has the uncanny ability to get those suckers off in a hurry.

Her head seems stable. I try not to think to much about it. But is like a nagging tooth ache that never really goes away. Every thing she isn't doing that she should be doing, I wonder if it is related to her head.

Therapy hasn't been real consistent the last month due to our being out of town and our therapist being gone. Therapy is a hard one for me these days. I am in constant turmoil if we are doing the best things to help Bella progress and rewire her little brain. I LOVE LOVE our therapist, I just always worry if we should be doing more or doing things different. I have been praying about it. I just want to feel the peace that only God can give. I have to have faith that He will direct in the path that is best for Bella and our family.

Bella was sick last week with a yucky nose. Thankfully her lungs are clear and her o2 levels are great. She is still on night time o2, I am hoping we can kick that after the RSV season.

We also had a huge event in our house last week....We said goodbye to Hellga. She was a loyal member of our family for the last year. She was reliable and very needed but her time with us came to an end. I will say it was bitter sweet and some tears were shed. But Hellga is gone...may she rest in peace. In case you are confused, Hellga was my breast pump. Yep, I am a free woman again. Bella is enjoying frozen milk these days.

Bella has a big day fast approaching next week. Can you believe that it has been almost a year since this little miracle came into our lives. What a blessing she has been. It has been quite a year for us, full of up and downs. Sometimes, I find myself getting caught up in all the things she isn't doing and obsessing about what we should do or should not do....and I was reminded by a fellow micro mom to slow down and not wish away this time with Bella. So my goal is to worry less. Enjoy the little things. Appreciate today. Give thanks for all the blessing that are mine. Find happiness. And like the little engine, I will say "I think I can.....I think I can"

Now, off to give sweet Bella a good morning kiss and get my kiddos off to school. May you have a wonderful day!!

National Prematurity Day!! And SLC update.

2012-11-17T09:38:00.000-07:00

Today is National Prematurity Day. So if you read this today, quick, go find something purple to wear to show your support for these tiny miracles. Today, we celebrate Bella and other micro preemies and preemies around the world. We remember the baby angels who for reasons known only to God were taken too soon. We pray hard for those who are experiencing premature labor and the scary emotions that go along with it. We pray for those in the NICU fighting to overcome the fact that they came too soon. We pray for those of us who have "gotten well enough" to go home from the NICU but are still riding that preemie roller coaster. Today is a day to find joy in the small things.

I needed today. I have been feeling a bit down lately. Struggling with feelings of guilt. Feeling anguish over the fact that Bella has to struggle so hard for so many things. Then through a good friend I was reminded to celebrate the moment. There are blessings all around, but it is up to me to see them and act on them.

Will you join with me today in celebrating life. Go "get your purple on"! :)

Salt Lake City update:

We saw a new eye doctor that I really liked. He said he was optimistic about Bella's vision. She does need glasses (which we have ordered), pictures to follow. He also said she does have cortical vision impairment (which we hope will get better with time). He also said she will eventually need patching and surgery to fix her eyes. So, we pray for the best. We pray that her brain will learn new vision pathways. That with the glasses her vision will improve and in return maybe her motor skills will improve.

Her neuro appointment left me feeling both discouraged and hopeful at the same time. Her ventricles were again, maybe, slightly larger. But clinically she is doing so well that the surgeon said it would be a shame to do surgery at this point. He has consulted with other doctors in his practice as well as with the Neurosurgeon who first started doing the choroid plexus coagulation. This doctor started doing the procedure in Africa in hopes of helping kids with hydrocephalus have better outcomes. In Africa shunts aren't really an option because these kids don't come in for follow up visits, so the shunts fail or get infected and the children would die. So, he wanted to come up with another option that would hopefully help fix the hydro without a shunt. Enter the procedure that Bella had done.

All of the neurosurgeons were in agreement, treat the patient not the scans for right now. Both have said that Bella is a bit unusual (no, not our Bella.....lol). Most patients either do great and have an obvious success or have an obvious failure within a reasonable short amount of time.....Bella, however, is riding that gray area in between. In true Bella fashion, she is doing things in and on her own time frame. I have talked to her and told her what it is doing to my nerves, she just smiled big at me.

We go back again in 2 months for a follow up visit with the eye doctor and neurosurgery. She will have an MRI at that time in hopes that it will give the doctors a clearer picture of what is going on.

We thank you all for the many prayers and positive thoughts. We are also so thankful for those who helped us on our trip to Salt Lake. Your "gift" was timely and so needed. I will just say this, Matt has amazing co-workers. We love you guys!!

Happy 11th Month Day

2012-11-11T23:17:00.001-07:00

Very fitting, so much to be thankful for today as it is Veteran's Day and Bella's 11 month-day. Yep, in another month our little Bella will be one year old. Can you even fathom how fast time has gone in the last year? Amazing.
So much to report. Bella has had an up and down time since our last post. Becky has been consistent about getting therapy accomplished here in the home as our sweet, sweet therapist has been out sick over the last couple weeks. Bella lasts through the majority of the exercises and stretches, but still has trouble with keeping her head upright and trunk control. She kinda folds up like a taco, especially when her legs straighten out-almost as if it's a involuntary response.
She Cu's, laughs, cries pretty good, she can roll side to side and even side to abdomen occasionally. Shes still having trouble with focusing appropriately with her eyes, but I do know she is fixing on objects a bit better. We trialed her off the night time O2 and she did well, but the O2 sat probe thingy will not stay on her foot, when we asked for a larger or band-aid type one from our home O2 company, they sent us one that doesn't fit...buncha goobers.
Anyways, we now leave the cannula off because it was causing her some stuffy noses (even with the bubbler) and so now we have a blow-by set up of a simple pedi-mask that we set close to her. The first night we used that we also had the O2 sat probe connected and she did awesome! Now we just utilize the blow by at nighttime.
Got our 1st snow in GJ yesterday, it was pretty cold all night and throughout today. BRRRR! Currently it's 25 degrees outside. We are trying to get the ducts and registers blown/cleaned out before we fire up the furnace, but we are having some scheduling conflicts.
Just so you know, we are headed to SLC this week for a follow up at Primary Childrens in the neuro department. Scheduled head US, then potentially an MR scan, then depending on those results, a potential procedure and/or surgery for a shunt placement. We pray for the right ventricle in her head to be normalizing and for her to not need any further surgeries, poor baby.
She has been a little more fussy, puking a bit more often-we think closely related to the reflux and she is just not gaining weight. She is loving some baby food at least once a day, trying twice a day, but is still having concerns with constipation. Roughly every 10 days she needs a pedi-enema. They are not fun for her as she cries throughout the procedure and the after effects.
So....we move forward in faith-hoping for the best-praying for the best and God's will to be done. Thank you all once again for prayers and best wishes and your service to us in any capacity. We love you!

-Matt-