More Nesting

Thursday, March 13, 2008

Thursday March 13
The hospital did not need the Nesting Room for anyone else for tonight so they are letting us stay here another night. Such a blessing. I actually did not sleep too poorly on the sofa bed. It was a relief to both Mike and I to not have medical people coming in and out all night long. Plus, it was so great to sleep next to my husband again. Cayman has her shunt surgery tomorrow afternoon. We're hoping to be able to stay in the nesting room until she's back from surgery, and they probably will let us if there is no one else needing it. It's comfortable to have our own isolated space to go to. And our families are going to be here for Cayman's surgery so it would be nice to visit and wait together in the Nesting Room.

Cayman had visitors this evening! My Aunt Linda, Uncle Martin, and cousin Laura traveled four hours to come see us for about an hour and a half and then drove back home. Cayman was comfortable and active so it was nice they got to see her at a time when she wasn't so sedated...which seems those times are so few. She slept most of the time and did not open her eyes like I hoped she would for them, but she knows she needs to rest for her surgery tomorrow.

Today for the most part was an uneventful day for Cayman. Other than a visit from the ophthalmologist (eye doctor). I wish so badly we could go back and refuse for them to do any eye tests on her but we did not quite know what was going to happen. We keep learning so much in this whole process and one of those things is to have a voice and take greater action above the doctor's choices. But anyways, they looked at her eyes and discovered she has something called Iris Coloboma, which is where instead of her iris (the colored part of her eye) being round, it's shaped more like a keyhole. So the ophthalmologist wanted to exam the back of the eye. He put drops in her eyes that dilated them. I've had those drops before and they do sting a bit and her little face scrunched up. Then, with an instrument he could look through the dilated pupil to the back of the eye. But because a baby can't follow instructions-look up, look to the right, etc- the doctor had to "force" these actions to take place by sticking the end of a Q-tip behind her eye through her eyelids. Mike was there during this. He said she clenched her fists, pulled her arms tight against her body and just shook. She's still on the ventilator so she can't even cry out. I wish we would have said no to this eye exam. There is no reason they needed to do that to her at this time. Her eyelids were so puffy after that, and her eyes watered for awhile. The doctor did find that she also has Retinal Coloboma. These two eye defects will most likely not cause her blindness. If she would be blind that would probably be more from the Hydrocephalus. But these eye defects could cause fine vision impairment. I'm not sure at this point if glasses or something could help it, but this is the least of our worries right now. I just wanted to hold my baby so badly and comfort her after this awful eye exam she endured, but we still can't hold her. We're getting closer though. Hopefully by the beginning of next week we can hold her. I cried so hard after all this. When will they stop finding more things wrong with her?!?! I don't understand. I did everything when I was pregnant with her to ensure my baby would be healthy. Even when I was very sick I still took my vitamins, avoided all the stuff that should be avoided in pregnancy, etc. And there is absolutely no explanation for her multiple anomalies!! And each one all took place at different times in the pregnancy so there is no connection to each other like if I would have been exposed to something that could have caused all this. There's nothing like that. They would like to do a full gene analysis on her and that would take about a month to get the results back. I did not know there was any further genetic testing they can do beyond what the amnio did. I'm not sure, maybe that is one of those things we'll say no to....mainly depending on what all she'll have to go through for it. If it could help us know the best care for her then it will definitely be considered. We're not too worried right now about trying to find out if this could be something that we could see reoccur in future children. We may never have anymore biological kids. I don't like that all my future pregnancies will have to be by C-section and I will have to be put completely under each time. I feel so robbed of Cayman's first few minutes...well hours for that matter, of her life. She was almost 4 hours old before I got to meet her. Mike videoed her right away when she was born. She was taken into a Treatment room when they took her out of me and Mike got to go in there immediately. I hope to post this video soon of Cayman's first 5 minutes of her life. I've watched it about a thousand times on my camera's tiny screen....thank God for rechargeable batteries.

6 Showin' Comment Love:

Jennifer said...

You guys are so brave. I can't imagine the questions you have. The Lord commands us to "Be still and know that HE is GOD!" Still praying for you! I can't WAIT to see pictures of Cayman! I know she is beautiful!!!!

Maren Williams said...

Cayman is one tough little girl! I can only imagine how hard it must be as a mother to watch your child endure all these tests, but just think, it won't be long until you can hold your beautiful girl in your arms :) I'm thinking about you and your family a lot and praying for you.

Sarah said...

I'm so glad that you are able to write about this stuff to get it out. You obviously have so much to deal with, on top of the pregnancy/new mommy hormones. I partially understand your feelings of loss and regret, that things were taken out of your hands with Cayman's birth and so much of her time since then. Always give yourself permission to vent, cry, get angry, etc. It is something you can do, even when you can't do other things. It does help.

We are also praying for you, Mike and Cayman. We praise God for every good thing He has given and keep praying for all her ailments/surgeries, etc. And I think you are right to start saying no to stuff. Doctors seem to forget that your baby is a baby. I hope you can get the strength and wisdom to be able to say no to what is unnecessary for her. We'll be praying during the surgery today! I wish we could come up to visit, and maybe we'll get a chance sometime soon. We'll call first if we can.

Donald, Lisa, and Co. said...

Kristen-my heart aches for you and all that you are having to endure. It must be so frusterating to have no answers to all the 'why's?'
I hope that you can find simple joys where you can - whether it be by holding her hand or staring at her beautiful face.
I will be praying that her surgery goes well today. God bless you and your dear family.

samantha said...

I'm praying for my baby niece! I wish i could be up there with you guys today during the surgery. I'll see you soon! love you! :)

Kendra said...

Wow, Kristen, you are an amazing woman! We are praying the surgery went well, and will continue to pray for the miracles God can provide. You and Mike are exceptional people, and your daughter is one lucky little girl. Rest in God's arms, but don't feel bad for questioning Him. We don't understand, but He sees your frustration and anger, and loves you even more for it. She's a beautiful little girl, from the picture you posted we can tell that!