Father's Day

Carly loved swimming today. Ok, she mostly slept...even in the pool. How does she do that! We had fun spending father's day with 2 great dads!

 

9 weeks

9 lbs. 7 oz. and 22 1/4 inches long. She's getting so big! She's in the 10th percentile for weight and the 23rd for height so she's catching up. She had 3 shots today which weren't any fun. She did pretty good though and only cried after for a couple of minutes. Its been a rough day, she's been sleeping or crying most of the day which I'm afraid could mean she wont be sleeping tonight. Her next shots wont be until 4 months. Yea for my big girl!

9 weeks old

9 weeks old, first photo shoot with mom

10 weeks old, same outfit she came home in after surgery but this time it fits

First time in the pool

Memorial day, picture with big brother

A little more

I guess its time to add a little more to the story...where did we leave off...

Friday, March 21, 2008 at 12:10 pm Carly was born via c-section weighing in at 5 lbs, 3 oz and 19 1/2 inches long. I woke up while I was being closed up and was only told that she had been intubated and was taken to the NICU along with my husband. Thad came and saw me in recovery and showed me some pictures of our beautiful girl. Finally after 4 hours in recovery I was wheeled (in bed) to see my girl. She was beautiful!!! I was taken up to my room after 30 minutes so a brain ultrasound could be performed and right after getting settled the NICU called for my husband to come down and talk to our Neurosurgeon and Geneticist. C-section or not, do you think I was going to let him talk to the Dr's alone?!?!?

The diagnosis was not good. Her brain looked like mush. She may or may not live. She would be on machines to breathe for the rest of her life. She would never walk or function like a normal child. Her life expectancy was not long. She probably had brain damage although the extent was not known yet. She had a malformed nose (it was flat to her head, like it had been pushed over) which could be due to other genetic disorders. Testing would need to be done to find out what other genetic disorders she had.

I spent a few hours with my baby just holding her hand and touching her face and back. Contact was limited so she wasn't overstimulated. Leaving her that night was the hardest thing I had to do but our wonderful nurse promised she would call with any changes. That night was rough for me both physically and mentally. Recovering from a c-section sucks!!!

Saturday morning she was already showing improvement. She was extubated and placed on c-pap! I wish I could remember the details and even more, I wish I would have kept a journal documenting her progress. Sunday was Easter and we spent the day with Carly and then my family brought us yummy Easter dinner. That night we finally got to hold Carly. My dad and my brother and brother-in-law came over and gave Carly a blessing (something our church believes in). She was scheduled for an MRI Monday afternoon and we were scared for what that would show.

Monday morning when I went in to see her she had been placed in a bili blanket. Her bilirubin levels had gone up through the night and were very high. But she was finally starting to take a bottle. I was allowed to hold her but it was very limited. She was taken for her MRI that afternoon while I waited out in the hallway. We didn't get the results back until later that day but the results were nothing that anyone expected. She was a completely different baby. Her brain looked like a normal brain. It was still massively swollen and the diagnosis of Aqueductal Stenosis was certain but other than that her brain looked normal. We were blessed again.

I was finally forced to leave my room wednesday evening and had to go home. The week went on- a bili light was added to her treatment, she went up on her feeds and her levels finally started to go down to a normal level. By thursday morning they were talking about going home! I had Thad bring down her carseat for a carseat test and she passed! Now she had to keep her feeds up through the day and we would get to go home!!!

Friday came and we were discharged!! Now time to panic. We were given a list of things to watch for and our appointments were set so we were off into the big world.

Up next, pictures from the first 2 weeks at home and Dr's visits!

Carly and Mom

My mom took some pictures of Carly and I on friday and I thought they were really cute. She is getting so big so fast! She's doing really well. She had the pressure adjusted in her shunt on friday and will have an MRI and ultrasound in 2 months to make sure everything is going okay. Carly is great, I love her more than anything!

Shunt day

I just wanted to let everyone know that Carly had surgery today to have the VP shunt placed. The surgery went really well and so far seems successful. The recovery so far has been a little rough but I'll update and add all the details when I am not so exhausted. I am reluctantly home for the night and will go back to be with my baby in the morning. If her recovery starts to improve she may be home tomorrow, although based on today I'm not sure if that will happen. I'm off to bed but I will add more later.

********************UPDATED********************

As promised, details of the surgery have finally come. The surgery went very well and as planned. I have posted a diagram (the one on the left) of the surgery and what the shunt looks like. Our Dr placed hers in the back of her head and the catheter goes into the left ventricle then drains into her peritoneum (the sac that is around all the belly organs). We saw her about 2 hours after the surgery. It was very sad, she was so pale and looked so helpless. For a while we couldn't touch her because the stimulation would cause her to become apnic. The apnea continued to be a problem all through the day and night and with feedings. The first 2 tries at feeding were pretty scary, blue is not a color I enjoy seeing on my daughters face. Alarms went off, Dr's and nurses came running in, they bagged her...very scary. I somehow left her for the night and came home to sleep. (not without help though...thank you pain pills)! When I went back the following morning she looked better and worse. Her color was better but her head was very deformed from the pressure being released. Her bones overlapped and the soft spot was very sunken in. I was told this was normal but for me it was not normal. I have however gotten slightly used to what she looks like. She was monitored all through the day and was finally released around 5pm. We have been doing very well since we have been home. The only differences from before is until she gets the stitches out of her head she can't lay on the incision or shunt. She can only lay on the sides of her head and has to be rotated or the bones in her head shift. She can't be held much because she has to stay as horizontal as possible so that the pressures start to normalize. We have to keep very clean as she is highly susceptable to infection for the first 3 weeks and up to 3 months after the surgery. I have a very brave and strong little girl. She is perfect and is doing so much better than anyone imagined. We are just taking it day by day for now!

Head photo's before

Head photo after surgery

Beginning of the story...

Our story begins in July 2007 when I started fertility medications and became pregnant with 3 through Intrauterine Insemination. I was called with the good news that I was pregnant but needed to continue having blood tests to make sure that the pregnancy hormone continued to rise and to monitor by blood as I was on high doses of Heparin. 3 days after I was told that I was 5 weeks pregnant I got another call from my Dr's office to tell me that I had lost the baby but my numbers were still rising so if they didn't go down within 2 weeks I would need to take a medication that would make my body abort the growing tissue. I struggled with the loss and decided to take my son (technically my step son) up to my parents cabin in Idaho. My fertility Dr agreed to my going on a trip just as long as I had my blood tests up in Idaho. So we packed and took off and spent a great week going on the quads, playing with family, hot tubbing, kayaking on the river and relaxing. After my first blood test up in Idaho the Dr from the clinic called me with the results. The pregnancy hormone in my body had tripled and it was his feeling that I was still pregnant and that I should insist on an ultrasound before taking the medication. When we returned home my husband and I went into the office and he started writing the script for this medication (I have NO idea what it is called) and I told him I wouldn't take it until I had an ultrasound to confirm that the fetus was unviable. He proceeded with the ultrasound and guess what we saw...a heartbeat! He also saw a second sac with no heartbeat and a sac in my tubes. (and he wondered why my numbers weren't rising like they were supposed to...) He took measurements and according to my IUI date the baby was measuring 3 days behind. We were told that if she fell to 5 or more days behind we would probably loose her so I was monitored close for the next 8 weeks. At around 14 weeks I was released to my OBGYN for normal maternal care.

Everything was looking great in my pregnancy, the baby looked great and sounded great! In November 2007 I went in for my 18 week 2nd trimester survey. My parents came with us to see the baby and find out what it was. We were so excited to see our little baby that up until then we fought to keep. We found out that it was a GIRL and I was ecstatic! Our ultrasound tech was going through and taking all the measurements and then left to get the Dr. We never knew that something was wrong. The day all seems a little fuzzy but here is what I remember. The Dr told us that she had severe ventriculomegaly, her nasal bone was extremely hypoplastic and she had many markers of Downs Syndrome. We met with the genetecist and were given the news that she would probably be brain damaged, would have severe facial malformations and most likely had Downs. We were advised to have an amniocentesis and I needed to do this before 22 weeks but that in itself was risky. According to the genetecist, we would be better to abort than have a baby that would not live. I was angry. I cried and yelled and cursed my Father in Heaven. I was angry with him for punnishing my baby for MY mistakes. Somehow, and I don't know how or even remember how, I made it through the next couple of days.

To make a VERY long story shorter...

I had an amnio at 22 weeks because I thought that I would rather know of any health problems before hand and be prepared. We had already decided that we would have our baby no matter what so abortion was completely out of the question. She came back negative for Trisomy 13, 18 and 21 but the source behind the swelling was still in question. I had ultrasounds every 3 weeks to check the swelling and determine how to treat her. At 25 weeks I had a fetal MRI which determined that she had Aqueductal Stenosis which was causing Hydrocephalus. Her ventricles were over 2 times the size that they should be. We were referred to Neurosurgery for a consult to begin her treatment plan. The swelling continued to be severe and at 29 weeks it was determined that she would be delivered at 32 weeks. At 31 weeks I had my final ultrasound to measure the growth of her brain. The swelling did not go down any but was not increasing at the rate it had been so the Dr's decided to hold off the delivery and do scans every week. Although the swelling did continue they felt that it would be better for my baby to hold off as long as we could. We made it to 35 weeks and 6 days and the decision was made to go ahead with delivery. I had another amnio to check lung development and although they weren't as developed as they wanted, they looked good enough to go ahead with delivery. I was admitted Wednesday, March 19, 2008 at 8pm for induction. Due to fetal distress, failure to dialate and 2 failed epidurals I was finally taken in for a c-section on Friday, March 21 and my beautiful baby girl was born at 12:10pm. Yes, that was nearly 36 hours in full on labor.

I'm pooped for now but will finish my story later. So enjoy the pictures!