Tatum Update: Last night was a weird night. I was a little wired, with anxiety and anticipation of what was going to happen today. After about 2:30 am I tried laying down off and on until about 5 am when I felt like I needed to be up and getting ready for the day. Tatum had needed quite a bit of suctioning through the night, so it was a very restless night, luckily I had had a Tab at the hospital earlier and I had finished off two cokes that were left over from trying to unclog Tatum's tube. It is really rare that I drink caffeine, so I was a little shaky by the end of the night. The morning went really smooth. We got packed up around 6:45 and headed up to Primary Childrens.
When you first walk in to the hospital there are two big pictures of little babies that look a little sickly. Lance said that the first few times that we went up there ,before Tatum was diagnosed, he remembered thinking how grateful he was that our baby didn't look sick like those babies. Now we could only wish that our baby looked as "healthy" as those babies. Amazing how a few months can change your perspective.
When we first got there we went to the wrong place. We thought that we needed to go to the same day surgery area to have the sedation. We were sitting there for a few minutes. You are sitting in this smallish waiting room with several other families all there for surgeries for their child. One of the families had several family members there besides just the parents. I figured that they must be there for a pretty serious surgery. After a few minutes one of the receptionists told us that we needed to go straight to Radiology and they would do the sedation there just before we were to head back. We walked out to the elevator and the grandma of the family that we were in the waiting room with was in the hall way. She mentioned that her granddaughter had the same car seat cover as we did. We laughed and she said they took a double take, like maybe we had their baby. She said something to the effect of "oh you would bring her back because she was there for heart surgery and that at 4 months she still only weighed six and a half pounds". I wanted to tell her something like, well at least you have some hope that your baby could possibly get better. We are here with hope that we can make our baby's dying more peaceful. Out loud I just smiled and said good luck. I really don't feel sorry for myself, but sometimes people don't realize what others are experiencing. Especially in a place like a childrens hospital. You never know what is going on with even the healthiest looking kids. You never know.
We got to the right place eventually and they brought us back to a little room where they were going to start the IV for Tatum. The nurse was great. She listened closely to her history and the nature of her disease. She assured us that she would be very conservative in her use of sedation. Tatum was super calm all morning hardly a seizure and breathing really well. Rockstar!
They got an IV on the first poke, but it was sketchy. The nurse was afraid that it might not last, she wasn't super confident in the sight. Then they let us walk back to the room where the tube would be changed and they would place the picc line. I was grateful that they let us stay with her as long as possible. I just kept thinking that if something were to go wrong, I would be thankful that I was able to be with her as long as possible. Eventually they had everything ready to go and they said they would find us in the waiting room when they were done. They said it would take about an hour and a half.
We left and went to the cafeteria and got a bite to eat and then we went back to the waiting room. This is where everything caught up to me. I could hardly stay awake. Finally after what seemed like an eternity, (especially for Lance since he was conscious) the doctor came out and told us that all went well. He said that the tube change went fast and easy, it was the picc line that took a little longer. He said it was pretty difficult to secure. Confirmation that we really needed to have it done.
We were then brought back to recovery. I was surprised to see Tatum's eyes open.
I thought that she would be too sleepy, but she was pretty awake for a few hours after the surgery. Probably thinking Enough already. What are you people doing to me now, I can't close my eyes for a second! It took us a little while to figure out some new things about her tube, but once we got that all figured out we were able to pack her up and get the heck out of there.
Tatum has done fantastic since we have been home. She is peaceful and restful. I am anxious to see how she is in the next 24-48 hours.
My birthday wish for her is to get her to smile. It seems like they are getting fewer and fewer.
Thanks for all of the prayers that were sent up for us these past few months, but especially in the past few days and weeks leading up to this day. This day could not have gone any better. Prayers were definitely answered today.