Friday, February 25, 2011
Wednesday February 23rd
Our pediatrician suggested we apply for Early Interventions, so on Wednesday we had a nurse come out to look at Lindsay. There are not a whole lot of tests they can do at this point because Lindsay is so small, so she didn’t qualify, but they are going to keep tabs on her and she may qualify later because she is at risk. We found out that she is developmentally delayed already just because her head is so big she can’t lift it up on her own at all or support it herself. The nurse also felt her head and said her soft spots felt full, and when we measured her head we found that it had grown 4 cm, and the nurse was also concerned about her “sun setting eyes” and suggested that we go back into Primary Children’s. I called the neurosurgery and they said to take her into the ER.
We got into the ER just before 4:00 and waited and waited. We talked to so many people, but no one was really sure what to do with us. We finally got in for a CT and then we waited and waited. Over 5 hours later they finally admitted us into the hospital and decided they wanted to keep us overnight and do an MRI in the morning. This time we got our own private room (which was HEAVEN) but unfortunately even with just Lindsay it is REALLY hard to get a good night’s rest between that awesome cot and people coming in and out to check on our little Lindsay.
Thursday February 24th
Lindsay had to start fasting at 5:00 am and then we went in for the MRI around 9:00. I asked the nurse if we were going to have to wait the 12 hours for her recovery, but they said that since she was over a month we could go home as soon as she was ready. When Lindsay got out of the MRI they said that her cyst had gotten smaller but that her ventricles were growing and that we would probably be staying the night and going into surgery.
Dr. Kestle looked over the MRI and said that he thought that passage was open and that the cyst was draining, but the spinal fluid wasn’t draining fast enough from the ventricles. So, he said that we could either try doing a shunt or we could try poking holes in the ventricles and hope that the spinal fluid would drain up around the brain, but that surgery only has a 30% success rate at her age. The success rate goes up to 70% if we wait until she is 6 months old. So, now the problem is just weighing the pros and cons. It would be better for her not to have to have a shunt because her ventricles will shrink a lot and the shunt will need to be replaced (possibly several times). Then, if they wait until 6 months to try the other surgery her head will have that much time to be growing and swelling, which will not only cause brain damage but put her developmentally behind. Darin also thought there was a possibility that she wouldn’t need either, but I didn’t remember him saying that (but I hope he did).
(Our private room)
(Waiting for Lindsay to come out of sedation)
So, after our talk with the doctor he said that he wanted to talk with some other doctors about it and get some other opinions then let us know. He also said that Lindsay could go home as soon as she was out of sedation, could breathe on her own, and keep a feeding down.
Lindsay woke up, but every time they took her off of oxygen she wouldn’t do great. I fed her and she kept her food down, but she just couldn’t keep her food down. We were hoping to go home around 3:00pm, but since she still wasn’t breathing they moved us over to the NICU about 8:00pm.
I think I was really tired and really emotional at this point because I had a breakdown over something not even a big deal. As we were moving from the IU to the NICU someone (I think trying to comfort me seeing my watery bloodshot eyes) said, “Oh, what a cute little boy!” (That is right she said BOY). As soon as we were in the NICU I started to bawl and said, “She’s a girl, and a really cute girl!! She just needs some pink or a bow.” Two of my darling nurses left the room, and came back shortly after and said, “We went shopping!!” And they put Lindsay in a darling little pink outfit and put a cute little bow in her hair. Again, their kindness made me lose it again. Those sweet girls!!
(Lindsay in her new outfit and bow. You can also see a mild version of her "sun setting" eyes)
The NICU is a lot different than the IU in that there are no cots or even comfy chairs. My chair was wood and hard (obviously), and the space is so tiny (since there are 5 other babies in the room with you) that every time the nurse needs to check stats, the computer, monitor, etc. you have to get up. I asked the nurses what the policy was on spending the night with the babies and they all said I needed to go home. Not necessarily because of the policy but because I was so sleep deprived that I wasn’t any good for Lindsay anyway. I started bawling again because I didn’t want to leave my little baby, but I knew they were right. I gave them the breast milk I had pumped and sadly went home.
Friday, February 25th
I woke up, pumped, got ready, got Matthew ready and took him up to my mom’s, and then into the hospital after 8:00am. They said that Lindsay had done really well during the night, and that she ate all of my milk, and then also had some formula, but they didn’t take her off oxygen until 7:30 am. I thought they were going to let us go home around 10:00am, but every time Neurology came in to see if she was ready for discharge her oxygen levels would drop and they’d want to monitor her longer. We finally made it home around 6:00pm.
(Hanging out in the NICU)
So, now it is WONDERFUL to be home (I am not a big NICU fan—hoping we don’t have to do that one again). Now we just need to wait until Monday to see what the doctors think the next move should be.
Thank you so much for all the prayers, service, help, babysitting, meals, fasting, notes, etc. from everyone! We can’t believe all of the people who have reached out to us during this time. Even little things like leaving comments on our blog and facebook have meant so much! Even from people we don’t know so well, or that we haven’t talked to in years—it means the world to us!
As hard as this challenge has been we have really felt the prayers of others. We feel so blessed to have such wonderful friends and family. I knew we had great friends and family before, but I didn’t realize that everyone was THIS good!! We count our blessing everyday—they are endless!! This experience is making me want to be a better person! I can’t believe how selfless people are! It really makes me want to be a better person and be like the good people around me! Thanks again especially to our family (mom and dad and Heather and Greg) for taking care of Matthew for hours and hours on end!!! We love you sooo stinking much!!