The San Diego News did a segment about Cranio Angel Network (started by the mother who informed me on Cranio which led to Baby Girl's diagnosis). A picture of Baby Girl made it on the news and a part of the letter I wrote her. Sheila does great work and makes a difference in many people's lives.
Wow! I can't believe its been over a month! We have been busy with gymnastics and swim lessons the last few weeks. I've even been to the grocery store... aren't you all so proud. hahaha. I never knew "normal life" felt so good. Miss G and Little E have started back to gymnastics and LOVE it! Not surprised at all. If Miss G works really hard this summer we were told that she will be put on TEAM! We are so excited. I'm very proud of her. She loves gymnastics and is ALWAYS practicing at home. Little E finally got up enough nerve to go to her own class. She is so cute in her leotard doing forward rolls and balance beam. I really enjoy watching the two older girls do what they really enjoy.
The girls being silly on July 4th
Baby Girl... is a hand full and I LOVE IT! She wants to be on the ground rolling and scooting but we can't for a few more weeks. She no longer will allow us to swaddle her in a blanket. She still needs to sleep on the back of her head (using a doughnut pillow given by the hospital) but she is now rolling over in the crib. We may have to switch her to a swing until the Dr. gives the okay. Baby Girl is active, energetic and loves to push the boundaries. Honestly, if she would've been the other two girls I would be constantly complaining but now... I get so much joy from her spunky personality. I am just so grateful that she is happy, healthy and full of energy.
Life is good, slowly but surely getting back to normal. I'm exhausted... physically, emotionally and mentally. Baby Girl is back to her happy energetic self. She just isn't doing so well at night. I plan on writing much much more but right now I'm just going to post pictures. She looks great. It truly is a miracle. I honestly can't believe it was just a little over 2 weeks since she had her surgery. It almost feels like it was a million years ago.
*Baby Girl has been sporting this gauzy cap to keep her incision covered.
*Aerial view of Baby Girl's incision.
*She started eating rice cereal this week. She is a pro!
*Don't you love the faces babies make. (We have a towel on her high chair to make sure she doesn't hit her head.)
We finally get to take Baby Girl back home! She made a huge improvement Thursday night to Friday morning. She went from having her left eye half-way open and the right eye open just a sliver to having both eyes wide open and ready to see the world again. The only problem is that now she won’t close her eyes! It is like she is afraid that if she closes her eyes they won’t open again. It is kind of sad to think about. Poor baby closed her eyes on Monday afternoon and then they didn’t open again until Thursday night. Unfortunately, now she won’t go to sleep and I was up with her all Thursday night with her. Then, driving home Friday she only slept for a little over an hour. Her eyes are all red now because she has only slept for about 1 ½ hours in the first 24 hours after she opened both of those pretty little eyes.
Miss G and Little E were so happy to see their little sister when she got home Friday night. They thought she looked a little different but the same. They missed her so much and were grinning from ear to ear to be back together with her.
Yesterday was a rough day for Baby Girl. The nurse we had was having a hard time keeping the medications on the right schedule and Baby Girl just didn’t seem comfortable at all. We finally had a nurse come in the evening and tell us we could try laying her on her side and she tipped her on her side and Baby Girl found instant comfort and was able to sleep through the night. She just seemed to be tired of lying on her back for so long and needed to switch positions.
Baby Girl had her head dressing removed this morning! She looks so different now. The swelling still hasn’t gone down so it is hard to recognize her little face, but she is much happier now that her head can feel the air on it again. There was a tube that was in her head that was draining excess fluid that was also removed this morning. All she has left stuck in her is one IV in her hand and they are going to stop all of her IV fluids now since she is starting to eat better.
She has always enjoyed bath time and she had her first bath at noon today. As soon as she hit the water she was soothed and we could see that she was enjoying sitting in the warm water.
There is still a lot of fluid in her head. She weighs 1.25 lbs. more now than when she came in on Monday. All of that weight, if not more, is just fluid, and most of it in her head.
After almost 48 hours since exiting surgery, Baby Girl is still being a trooper! The swelling should be peaking and be on its way back down at anytime now. She had a pretty good night last night and slept a little, at least from what we can tell. She hasn’t been able to open her eyes for almost two days now. That is one of the hardest things to think about right now. Just knowing that our little baby wakes up from being asleep and can’t see anything, it must be so scary for her! At least she knows our voices and how we feel. She likes to hold our hands and yesterday while Scott was holding her she kept on sticking her fingers in his mouth which is something she has always done.
Baby Girl has had a little bit of a fever for the past two days, but it is nothing out of the ordinary. We have been staying on top of the Tylenol with codeine and the Nubain to help her tolerate the pain and discomfort. Her sodium levels were a little low right after surgery (low sodium levels could be an indication of swelling in the brain). The normal range is 135-145 and her number was 132, it is back to 135! The doctors have been impressed with the way she is recovering. They have seen worse swelling and she has only thrown up once.
Thank you again for all of your thoughts and prayers and know that each one of them is felt and goes a long way!
After 24 hours in the Pediatric ICU, Claire got to move to the recovery floor of the hospital where she will be for the next 3 or 4 days until we go home. They have been telling us the day after surgery is much harder on the kids than surgery day. So far they are right. She hasn’t been very comfortable and hasn’t eaten like she did yesterday and last night. Her swelling is still getting worse as they said it would for 48 hours after surgery. The surgeon saw her this morning and had to cut her little head dressing because it was a little too tight for her. We have been in the recovery room for about three hours and she is finally resting a little, hopefully it stays that way for a while.