1 Month Old and Developmental Pediatrician

    Today my sweet Bailey is one month old. She started the day by causing absolute panic in Mommy who woke up 7 hours after putting her to bed. She was still asleep. Her bottle was still in the fridge meaning she didn't get up with Daddy at 3 or 4 like normal... she slept uninterrupted for 7.5 hours. We both needed the sleep but I wasn't ready for that one lol.

   We celebrated her one month birthday this morning by giving her the first tub bath of her life. She loved it. She seemed unsure at first but then just really settled into the warm water and smiled as I washed her.(little stinker wouldn't let me get a pic of her smiling) She especially liked having her hair washed, but she always has like water on her head. After she was all clean we took some pics but only one was really good.

    We had an appointment with the developmental pediatrician today as well. I am so happy with the outcome. They told us that because she was a preemie they only count her as being 9 days old developmentally. They count from her actual due date as opposed to the date she was born. Then they started working with her and watching her show off by trying to pull herself up, rolling over from side to side and belly to side, making noises, and all the other stuff that I thought was normal one month old stuff... The Dr. informed us that a lot of the things she is doing isn't normally done by healthy full term infants until about 4 months. She said she was definitely advanced. :) I was so happy and so proud.

My little miracle just keeps surprising me everyday.
   

4 Wks old but not quite a month LOL

So 4 wks ago tomorrow my little angel was born. To me 4 weeks means she is a month old but her Grandma reminded me that she won't really be a month old until Moday the 28th...  I don't know if I  am ready for her to be a month old already. So much has happened that the time literally flew away. She has only been home for 10 days and that seems like it should somehow be how old she is. It's crazy or I am, either way...

Bailey hasn't been feeling well the last 2 days and has some symptoms that say she has a cold and others that look like formula intolerance or maybe mild colic. I don't know so we are going to visit the pediatrician tomorrow just to make sure everything is okay. I don't want to be the crazy mom that takes her in for every sneeze, but I also don't want to make her suffer any longer than she has to if she is sick... If it's nothing than good deal and I can claim inexperience lol. If it's something, then hopefully they can help her feel better.

She is growing very quickly. Her closed hands can almost go completely around my index finger now. It's kinda funny how her tiny tiny hand looks so big... Her little feet are also growing quickly and don't fit into the feet of newborn sleepers and the rest of her is starting to fit into that size.

She met Draco our Bearded Dragon, (she wasn't allowed to touch him) they seemed fascinated by each other. It's so cool to watch her discover new things. I didn't realize she would be actively discovering new things so young. I guess I just expected her to passively lay around and look at things... She just amazes me every day. I am still in awe that we have her, let alone all the cool things she does as she discovers her world.

I  am just so grateful for her and every minute I get to be around her. She is truly the greatest gift that God has bestowed upon us. I know I have said that a lot lately but the amazement just stays with me and is renewed every time I look at her sweet face... Honestly I hope this amazement never goes away. It means she is growing in every way and that she is fighting and winning against a crappy  diagnosis and most importantly, that I haven't forgotten what we went through to get her here and how faithfully God answers prayers when we never stop believing.

6 pounds!

   Our baby girl has crossed the 6 pound mark! She is about a week behind when the docs wanted her to, but she is just suddenly sprouting like a weed. The clothes that she was swimming in last week (so big they were a safety hazard) are beginning to fit her. I am a very happy mama.

We follow up with the neurosurgeon next week and find out if she is healing well enough to get her stitches out. It will depend a lot on the swelling around her valve at the time of the apointment, but we have seen a great reduction in that swelling as long as we keep her at a minimum of a 45 degree angle.

She is becoming more vocal everyday and has begun making happy baby noises a lot. Of course with her new found vocal abilities we also hear more about what upsets her. Lol. I just love hearing from her either way.

I can't believe how normal life seems with her. I expected big changes and needing adjustment periods but that's not the case. Everything seems so right and normal with her here. (Don't ask me about this at 3 am, my answer may vary drastically lol).

No real new concerns this week. We are watching her left side as she seems to have so weakness in her left arm and leg and her left eye seems a bit droopy sometimes. We half expected this though because they think an in utero stroke caused everything. We will bring it up with her developmental pediatrician and her physical therapist in order to stay on top of any possible issues. But all in all I think she is doing well and had a great first week at home. :)

Home Again

Bailey was discharged again today from the NICU. She shows no sign of infection and looks and acts like she feels a whole lot better. The swelling has gone down a lot and the surgeon said he expects it to be completely gone within a week.

They removed her abdominal sutures today and we got awesome news. THE CARDIOLOGIST CLEARED HER. No narrowing artery, no required stint. Her echocardiogram looked so good that she doesn't need a cardiology follow up. Praise God.

Of course where one Dr. is removed  another tries to get added. They had a hemotologist look over her charts today and ordered some horrible test. ( I had to listen to her scream for almost 45 minutes and couldn't be there and comfort her) Depending on the results of those test we may have to be followed by said hemotologist. They suspect that her conditions may have been caused by a brain bleed due to the color of her CSF. We shall see...

We got her home though and she seems relaxed and happy, which makes me very happy. We have a ton of appointments to fill out our month though so she shouldn't miss seeing Drs. and therapists to much lol.

Doing well

Bailey is doing well and seems to feel much better. There has not been any infection in any of the cultures. There is still one going but at this point everyone expects a clean reading.

She got another echocardiogram today so hopefully we can put this possible heart issue to bed.

She has been on strong antibiotics all week as a precaution and if there was an illness starting in her, I believe they killed it.

She is not gaining weight as fast as they want and yesterday actually showed a 3 ounce loss overnight. They have added a calorie suplement to her evening bottles. If it helps she will have to have at least 2 bottles a day at home in order to up her caloric intake. If it doesn't help they will discontinue and see how she does at home. I think once she can eat on her own schedule when she is hungry and not being forced awake to eat, we will see rapid improvement.

We are looking at a possible discharge on Monday if everything stays where it is and tests come back clean. Hopefully we will be able to keep her home this time :)

Back in the NICU.

First let me apologize for taking such a long time to update. It has been a hectic week.

Monday night during her bath we noticed some minor swelling and seepage at Baileys shunt site. On the advice of the nurse line we took her to the E.R. to get checked out. By the time we got there the swelling had become superball sized and was visibly growing quickly. She was taking in for imaging that showed her shunt was operating properly and not broken. The fear is infection, but there is a chance that it's nothing and just happened because her skin is so thin and the fluid levels are to great for everything to drain from the shunt right away. CSF being liquid takes the path of least resistance and got in around the shunt. This of course is the ideal outcome.
But because we don't know and she was lethargic and grouchy she was admitted back to the NICU after only 30 hours of freedom.

They have her on aggressive antibiotics as a precaution and have taken every kind of fluid from her to culture for infection. So far nothing bad has shown up. There is some concern about the CSF they took as it shows elevated white cells. But day one of a 3 day culture was negative for infection. We still have to wait the full 3 days to be sure though. Because of the elevated white cells, they are going to re-tap her shunt resevoir and start another culture. So we know that we have at least another 3 days after today before she can try going home again... if an infection turns up she will need to have her shunt revised and of course that being a repeat brain surgery she will be here longer.

We got the results of her last echocardiogram and there was no change, so there is still some real concern from her doctors about whether her aortic artery is narrowing. If it is they are talking putting a stint (? The thing that opens arteries) in. I don't know what all that entails yet but am hoping it's fairly safe and easy and not actually heart surgery. Bailey has been through enough already.

The good news is that the antibiotics seem to be doing some good for her and she seems to be feeling a little better. She is awake for longer periods and a little less grouchy. They have her on Tylenol because she seems to be in pain, so hopefully that helps her improve further.
Until the results of all cultures come in, we are in a holding pattern here.

Baby girl is finally home!!!!

Our sweetheart came home last night. We are overjoyed to have her safe and sound with her family.  Praise God for my little troopers awesomely fast recover from surgery!

She had dinner with her family and cuddles with everyone who could be here. I am sure she is excited to cuddle with the remaining family members as soon as she can. :)

She had a rough night, sleep wise. I think she was over stimulated on top of the fact that everything was different. She needed a lot of extra cuddles, which I was only too happy to give, even if I did cuss under my breath a few times when my eyes had barely closed and she started again... I love her to pieces and she is more than worth the loss of sleep. It amazed me that Daddy ( who to be fair got up a couple times to help out ) was able to sleep through any of it. But he managed. He is exhausted too, but got a few more hours sleep lol.

We have to go today and buy her a new car seat as hers is just to big for her tiny frame. It's made for 4 pounds and up but she is lost and unsupported in there, even with the preemie positioner. We have to hunt down a wardrobe as well. Preemies are too big on her everywhere except length. She is about 2 inches to long for them... so the hunt is on for footless preemie clothes that don't pull on over the head. It's not been easy so far.

We have about a week to normalize and set a routine before all her appointments start. We already have a lot of them and her in home therapy, cardiologist and developmental pediatrician haven't been set yet. Plus once the insurance company is done taking their sweet time underwriting her policy we have to add a regular pediatrician to the list. I really hope that they hurry as she really needs to get set up with her pediatrician. They almost wouldn't let her come home because of all this delayed insurance stuff... We were really lucky that her neonatologist was willing to override the weekend on call doc, or she would have been there till the insurance stuff came through and she had a close appointment with her regular pediatrician.  Yesterday was a total emotional roller-coaster of " she's going home, she's not going home" over and over again.

Oh and we found out they don't think she was 36 weeks 6 days like originally thought. They think she is a true preemie at 33 weeks 6 days... that explains a lot that can't be explained by her diagnosed conditions.

But she is here now and starting to settle in. Cuddling her without wires is the absolute best feeling in the world. She is a true miracle baby and the second greatest gift from God that I could ever imagine.

Rocking through recovery

So Bailey is beasting through her recovery milestones. She is off oxygen, got her IV out and is eating like a champ and maintaining good blood sugar levels. As of today there have been no apnea episodes since her surgery and no spitting up food. Her x-rays and ultrasounds look good on her head and abdomin. She passed her hearing test. Showed improvement in strength and flexibility with the physical therapist today. We met with the developmental pediatrician and she impressed him.
Today was just full of good news. She was exhausted from all the docs and tests but still managed to stay fairly happy all day.
We had one bit of concerning news today though. They are watching her heart closely as there may be an issue with narrowing of one of her arteries. They are not sure yet but she may need to visit the cardiologist to have things checked out.
They have started talking to us about what she will need after she goes home and besides a ton of appointments with various specialist, she will need in home therapy for awhile to help with muscle tone, flexibility and to ensure that she is eating well and that her shunt is doing what it needs to do, along with other stuff.
We are happy about all of this after you go home talk. The rumor is Sunday as long as she maintains her appetite, continues to control her temperature and has no more apnea episodes. We have a long way to go but being able to be home and get on a schedule and normalize to our life will make things much easier on all of us, I think.
I feel so blessed. God has heard and is answering all the prayers for my baby girl.

Surgery went well, Recovery is murder

Baby girls surgery went very well this am. The doc had issues because she has no subcutaneous fat and her skin is thin, but he was successful and she now has a VP Shunt.
Recovery has been tough. She had to stay intubated longer than expected because her left lung semi collapsed. She woke up while the tube was still in and just cried and screamed except no sound came out and her little heart rate would jump above 200. It was all I could do not to cry with her. Her silent screams just killed her Daddy and I. This happened every time she woke up until the tube was removed.
They put her on oxygen for the evening. And finally ordered her some pain killers with evening rounds ( 14 hrs after surgery ) She wakes up crying and just wants us to hold her hand and stroke her cheek. It's all that will calm her. Hopefully her pain meds get up here quickly.
She should be allowed to eat again by morning, which will be nice because this little one has a voracious apatite and hasn't eaten since 1130 last night. She was HANGRY when we got here at 530.

As I mentioned last night her diagnosis was changed. Today we learned that there are only 1 to 3 cases per year world wide of congenital Colpocephaly. We wanted our baby doll to be her own unique person but this was more extreme than we were expecting as far as individuality is concerned...  There are ways to aquire the disorder but being born with it as the main issue is apparently exceptionally rare. There are very few studies and even less information readily available about it. The shunt will help but beyond that all that can be done is to treat any symptoms that may arise. We are praying for an extremely mild case with no noticeable symptoms. That being said we are prepared as we can be for whatever God has in store for our little family.

Change in Diagnosis & Surgery Prep

So the sweet peas diagnosis has been changed. They are now saying that it's Colpocephaly with Aquaductal Stenosis instead of Hydrocephalus. Because of the Aquaductal Stenosis a shunt is still required as opposed to a drain to just get out the excess fluid. So she will still have this lifetime commitment to this implanted device. :(

Colpocephaly is basically (as I understand it) where the white matter in the back of the brain either fails to form or forms more slowly than usual. This allows open space that allows the ventricles to dilate more in the back than the front. The prognosis is very different from that of hydrocephalus in that we are looking more at seizure and neurological disorders than mental or motor retardation. Because she is young there is a good chance that the white matter can still grow in once the excess fluid is gone or it won't. It's another wait and see deal. This is basically an untreatable condition, where symptoms are attempted to be managed. She may need a lot of physical therapy off and on as this condition can cause her muscles to tighten and shorten. It all depends on how her brain grows and responds after the excess fluid is gone.

There is still a possibility of brain damage like with the hydrocephalus because the fluid did and is pushing out her brain against her skull and causing pressure. Another wait and see.

We have spent everyday with her since she was born on Friday and I honestly don't see where she is lacking anywhere in her cognitive abilities or motor skills. I of course am not a Dr or expert in anyway. But I am greatly hopeful after seeing what she can do.

Her surgery is scheduled for 0830 this morning and she is already all prepped up. Her Daddy and I are just hanging out with her and hopefully getting to cuddle with her while we wait for the Drs. and anesthesiologist to talk with us and get us to sign various consent forms.