Going Home

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.

Head Dressing Removed

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.

48 Hours Post-op

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!

Pediatric ICU Graduation

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.

Plastic Surgeon Update

The plastic surgeon came in at 1:00 pm and told us that everything went well and that she is on her way to the PICU. We will be able to see her in about 30 minutes. He said that there were no complications at all and that things went as smoothly as possible. Luckily most of the nerves in her head will be numb due to the trauma for about three weeks so she won’t have much pain on the top of her head, it will just feel strange to her. The swelling will increase for about three days and then start going back down.

Everything went as well as we could have hoped for. Thank you for all of your fasting, thoughts, and prayers! We could definitely feel a peace in our hearts throughout the surgery.

In the middle of writing this we got the call to see our little girl. She looks different, but that was to be expected. It is hard to see your child hooked up to all those tubes, but it will be for the best. She is still asleep, but making her familiar noises. We love this little girl! She is so lucky to have everyone supporting her.

Neurosurgeon Update

*Before she went back for surgery.

Just received an update from the neurosurgeon, everything is going well. He said as they removed the skull from the head there were not any nicks or tears in the dura (the skin between the brain and the skull) which is really good news. Her bones are a little underdeveloped for her age which is not uncommon. This might actually make it easier for the plastic surgeon to mold them into the proper shape. As they were stretching out the bones in the face so that she does not have a mushroom shaped head, there was a little nick in a vein on the back of the head and they were able to stop it immediately and there is no problem.  She has received a blood transfusion because of her blood loss during the surgery.

The scariest part is now over, but we still have to wait to see her, which is not easy. They are working on putting the skull back together now. Once they are done with that they will let us know but it will still be a while before we can see her.

Thank you for your continued support, we can definitely feel it!

In Surgery

Baby Girl was taken back to surgery earlier this morning.  We just got a call from the nurse and she said everything looks great.  They should be out of surgery this afternoon. I will continue to update as we go.  Thank you to all who are fasting and praying for our family.  We feel it!

 The 2 older girls went to my sister's house yesterday... happy, excited and I think a little worried.  We took family pictures yesterday.  Baby Girl looked like an angel.  I will post pictures when we get them. 

I'm feeling quite emotional today. I guess that is to be expected. We are heading to the hospital.  Feeling blessed with such wonderful family and friends.  Thank you for helping lift our burden.  Thank goodness for parents.  Thank goodness for Heavenly Father.  Please pray for our little one. 

Little E

Little E (with arms crossed and head to the side): "I don't want nobody to shave Baby Girl's head."  

I agree.






I couldn't resist posting this one.  hahaha. 

Faith

We will be fasting for our Baby Girl before her surgery.  We would love for everyone who would like to participate to join the fast. 

The fast begins Sunday (May 22nd) at 4:00pm and ends Monday (May 23rd) at 1:00pm. 

We are incredibly grateful to everyone who has prayed and fasted in behalf of our little one.  We go into this knowing that Heavenly Father loves us and is watching over our baby.  We will be updating as much as possible. 



Mark 9:29 And he said unto them, This kind can come forth by nothing, but by prayer and fasting.

Day to Day

Baby Girl has started to whimper any time she sees a nurse...  it is so sad.  When she receives her Procrit shot each Monday the nurse has to prick her heel to take a blood draw.  The blood draw is incredibly difficult on a 5 month old.  Yesterday she got her heel pricked twice and then the nurse had to fill a vile with blood to check her red blood cell count.  The blood clotted so quickly that they couldn't run the test on it by the time the viles reached the lab. 

So this morning we had to go into a lab to have her blood taken with a needle out of a vein in her arm.  When the nurse said hello to her, she started to whimper and stick her bottom lip out.  It was pitiful.  It should be interesting when she is taken back for surgery. 

Even though her blood has been clotting fast she still needed another Procrit shot.  To be honest the blood draw is harder than the shot.  By the time she was done she was very tired.  I'm glad we are done with this part. 

* Sorry, but this picture just made me laugh.  This captures our true Miss G.  The girls spend all day every day dressing up.  Just had to show a picture of our day to day lives with these sweet, silly girls.

Look what I came across...

 *Little E when she moved to a big girl's bed.

*Miss G with her missing tooth.

I came across these pictures in our picture file.  Its amazing how much kids can change in just a couple of years.  I sure do love these little girls.

Saturdays...

Sun-kissed skin
tired babies
play set up
windows open...







today was a good day!


*Trying to figure out what to take to the hospital for Baby Girl and fam.  If you have any experience with this please give your tips.  I also want to bring things that will make the stay a little easier (ie. pictures, signs to put on or around her bed). Would love some opinions!

Let the count down begin...

We are a little over a week away from Baby Girl's surgery.  Life has been pretty interesting.  She started her procrit shots two weeks ago.  She has been full of ENERGY and HUNGRY!  She is getting up at night about every 2 hours and wants to eat all the time. I've been a walking zombie but happy because she is gaining weight and getting stronger.  She really is a ball of energy. 

*Yes, we finally can play outside! Look how big she is getting!!

Emotions are running a little high.  I really think its the waiting and knowing what is about to come.  We are spending as much time as possible holding and playing with our beautiful, happy little girl.

Oh my Little E

So surgery came and went.  Do you want to know the two hardest moments...

1. Watching Scott hand over our Little E to the nurse in scrubs and mask on her face and hearing her scream all the way back until they were able to put a mask on her face to put her to sleep.  Knowing how scared the little munchkin was and not being able to do a thing about it.

2.  Seeing a sleepy, out of it little girl who was just a little swollen and a touch of blood on her face be brought back to our room after her surgery.  So vulnerable so helpless.

Honestly, I think we needed to experience this so that we could prepare ourselves for Baby Girl's much more intense, risky and scary surgery in a few weeks. 

My faith is being stretched and my heart feels like it might rip sometimes...  I know its just being taught how to trust in Heavenly Father and His plan.  My babies are his babies.  He loves them more than I do.  He will do what needs to be done.  He will protect them the way they need to be protected. 

P.S. 
Little E did great.  She had a few moments of not wanting ice cream, popsicles or pudding and only want SALAD.  She was down for a few days but after switching her medicine to tylenol/motrin from the narcotic she was right back to herself.  Now she sounds a little bit like a really loud cartoon character.  The Dr. said she won the largest tonsils/adenoids of the day. 

*Isn't this wheelchair the cutest thing you've ever seen