In the PICU

I have been trying to write this update since Tuesday but was unsuccessful because I had no idea what was going on and all I could really tell anyone was that she was in the PICU. We know more now, so here we go.

Friday I brought Bailey to the ER for excessive sleeping and grouchiness. These are classic symptoms of a shunt malfunction. Because her fontenelle (soft spot) was soft they blew me off as a paranoid mom and sent me home after a CT scan that I demanded. They said she was absolutely fine and might have had a virus.

Over the weekend she wasn't sleeping well at all and was getting more grouchy. By Sunday evening she was showing signs of having a headache and light sensitivity. She started having trouble keeping her food down. She was crying and staring off into space and we were unable to regain her attention by sight or sound for several minutes at a time. It just got worse through Monday but every time I thought about bringing her in she started acting fairly normal and smiling.

Tuesday I decided to call her neurosurgeons office and was sent to the ER again. This time her surgeons met us in the ER. They ordered a CT scan that showed a slight evevation in ventricle size since Friday. Her fontenelle was still soft so they thought she was fine but tapped her shunt to test her csf just in case. They found an elevated white cell count and admitted her for observation. As a precaution they started inundating her with antibiotics. On Wednesdays morning nothing had grown in the cultures making it unlikely that she had an infection and imaging of various types showed no mechanical error of her shunt. What they did find was that the white cells were a particular type that generally indicates an allergic reaction or a very serious illness. They started her on steroids to combat it. The plan was to keep her here and on steroids over the weekend in hopes that it would suppress the immune response.

They kept teasing her with food. The would put her NPO (nothing by mouth) at midnight and not allow her to eat until the next day, sometimes well into the afternoon, and then put her NPO again at midnight or two a.m. She was miserable and grouchy. This is why they kinda ignored her grouchiness until Thursday night when she screamed uncontrollably for hours and hours.

The nurse was at her wits end and so was I. I had no idea what was hurting or how to help her and it was killing me. I was crying with her by the third hour. The nurse wrote some detailed notes about what was going on and started watching her pupils. They took her for a new CT Scan.

By nine a.m. Friday the surgeon was here informing us that her shunt was indeed starting to fail and that she was most likely allergic to the antibiotic coating on the shunt tubing. By nine-thirty they were wheeling her off to surgery. The entire shunt system was removed and replaced.

When she woke the first time she was already doing better. She smiled and played with her Daddy. She hasn't cried all night (normal for her not to really cry) even though she still can't eat and is very hungry. Her pupils are normal and she looks great. :) .

I am so glad I pushed for her as this could have gone really bad really fast had I listened to the ER doc on Friday. Watching her leave for surgery and watching as she woke up and was hungry and unable to feed her was and is torture but at least I know she is well and happy. A shunt failure can be devastating within hours of its occurrence. I am grateful to God that I had the intuition to know that something really was wrong before it showed up on tests.

So we now wait to see if she will go home today. There is a new DR. involved in her care now (infectious diseases) that may keep her here over the weekend as she investigates the source and cause of the white and red blood cells found in her CSF.  For now though all is well and we are hanging out and waiting.

2 Months and Amazing

2 months already!!!

So as yall know I prefer to end our posts with good news. That being the case we have to start this post with the bad news...
Bailey is having severe sleep apnea episodes. The alarms go off sometimes 3 times a night. Other times we go a week with no problems. We thought the apnea was being caused by the fluid on her brain. It is not... but that brings us to the good news.

Baileys brain is looking great. The neurosurgeon is very happy with yesterday's ultrasound. Her ventricles are within a normal range and she isn't showing any traditional signs of shunt complications.

This little girl has had an amazing couple of weeks and has learned some cool new things.  She has learned the pincher grasp. Yall most likely saw her picture on FB for that one. She has started talking (babbling) to her toys and sings with me when I sing to her. She has learned to hold onto our shirts as she is falling asleep so that we cannot lay her down without waking her. She is doing the crab scoot on her playmat to get to toys she wants. And then there is the super amazing thing she did....

SHE ROLLED OVER!!! From tummy to back. She has only done it once but she worked really hard to do it and her PT was really surprised that it didn't scare her, but instead she looked happy and proud. She wanted to do something and worked hard to make it happen! :D

This next bit isn't really an accomplishment for her, but she is doing it way early. This little doll is cutting teeth. 5 of them. 4 on top and 1 on the bottom. They are actually visable. Not just chewing and drooling but 5 visable teeth pushing on the gums. This is making her a bit cranky but for the most part she is handling it very well.

It's amazing how much she has learned and accomplished since our last update. Her head control is improving greatly and she can hold her head unsupported now for short periods of time. She uses her head to track objects now and not just her eyes. This is especially cool because it's something healthy normal 2 month olds do, it's not common for a baby with her diagnosis to be able to do these things yet. There is usually a marked delay due to head weight and size which causes weakened neck muscles in early development. She is powering through it all to accomplish whatever it is she has her mind set to do at the time. The stubbornness is strong in this one. I love it now (might be in big trouble in a couple years lol) and she smiles so big when she does something she was trying to do. Doesn't matter if the goal was to touch a toy with her right hand (huge deal) or get me to pick her up, once she does it we get a huge, full face, ear to ear smile. Makes my day every time.

We are so excited and proud of her and so very grateful to God for blessing her with the strength and will to do all of this. We are encouraged and excited to see what she will accomplish next.

On top of accomplishments she finally got to meet her cousin, and her Great Aunt and she seems to have made a new friend at church (a sweet little girl about 2 months older than her). She really seemed interested and happy around all of them. She is such a sweetheart and so much more social than her Mommy and Daddy.

She is doing her PT twice a month and now they have added OT once a week to help with the order of operations for eating (she gets confused sometimes) and to help with the fact that she doesn't like having her bare skin touched. (Hmm aversion to being touched... might have gotten that from me... NAH) The exception to this is bath time. She loves baths. Her last bath I allowed water on her face and she loved it. I have got to get her swimming soon...

Oh and speaking of eating; This little one weighed in at 9 pounds yesterday! She is growing like a weed and has moved into 0-3 clothes. She is too long for newborns now.

2 month pics will be up in a separate post hopefully tonight or tomorrow depending on how much she wants to cooperate. I am trying for tonight as I don't expect much cooperation tomorrow as she has her shots first thing in the am.

6 weeks

So Bailey is 6 weeks old. Not much new to report health wise. Her advancement is on track which is great news in it self.

She is rocking at just about everything she is supposed to be doing for her age. She is meeting or exceeding all milestones with the exception of making oohs and ahhs. She makes a lot of noises and will growl at you (taught by Daddy lol) but isn't making the "right" noises yet. She makes the faces for the noises but no matching sound. I think being able to mimic a growl is much better than oohing though lol.

She really is doing well and is starting to understand how to get things to her mouth, trying to hold her bottle and pacifier, how to reach and grab things she wants (not real coordinated yet but makes a great effort). Her head control and neck strength are really coming along and she is able to hold her head up for a few seconds and put it down gently once. If she tries a second time she flops down but she is showing great control, and more than anything, great will. She knows when she wants to do something and works hard to try to achieve it. I get the joy of praising her effort at least twice a day.

She is a happy baby generally and has a smile that lights up the whole house. It makes my day every time I see it. Unfortunately she won't allow me a picture of her gorgeous smile. She seems to be camera shy. I just can't figure out where she gets that from...

Awesome news

Today Bailey got an ultrasound and saw her neurosurgeon. We were given awesome news. Her shunt is working! Her ventricles are back to normal size and her brain matter is almost totally back in its proper place!!! And she got her stitches out of her head. :)

I knew it was good news as soon as the picture of her brain showed up on the screen. I had to ask where her ventricles were instead of where her brain was. It was such a feeling of relief and joy to see her brain on that screen.

No change in the missing white matter but the surgeon doesn't seem worried, he says that baby brains are elastic and can rewire themselves.

With her doing 4 month old stuff already, there is no reason right now to think her brain won't rewire and just work without that section I think.

He discussed her head shape with us and we are working on getting her to lay in a way that will help to reshape her head to a more rounded shape. If we can't successfully do it, then they are going to look into putting her in a helmet at 4 months to ensure her plates get back to where they belong before they begin to fuse together.

All in all we had an amazing day full of good news and new experiences for her. God has really blessed us and has shown us that not only are miracles possible but that miracles keep coming from miracles.

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. :)