Sorry again to all who have been asking how Claire has been doing. I'm so bad about setting up time to update this thing. We REALLY appreciate all of your concern and prayers! Did I mention that we have the best friends and family Ever!?
SO, Claire's surgery was on Wednesday, December 9th. Counting down to that day was NOT fun! While I was looking forward to being able to lay my baby on her back, and putting her diaper on normally, I was not looking forward to the trade off. Like I said earlier, we didn't know if her prognosis would change, or if the surgery would present more problems. Plus, I was dreading the pain that I would see my little baby in. We arrived at Children's at 7am. I was up all making sure that Claire was eating enough, since she wouldn't be allowed to eat from 5am on. They brought us back the the prep room to weigh her, measure her length, and head and to just get her checked in. They had a hard time finding a hospital gown for such a small baby, so that had to call the NICU upstairs. They also brought warm blankets to make sure that her core temp was warm before the surgery. The Anesthesiologists, Spinal Monitor, and Dr. Maugans (Neurosurgeon) came by to answer any questions we might have. Spinal monitoring is when they stick little needles (like acupuncture) all over your body to make sure that they don't lose any functions through out the body while dealing with the spinal cord. Dr. Maugans said that the surgery itself would be about 2 hours with 45mins of prep time before and maybe 15 mins after. He said that he would meet us after wards up in her room, and that nurses would keep us updated through out the process. We asked Dr. Maugans how often he saw this kind of situation, where the patient has the Chiari II malformation (in the brain) with the Mylomeningocele with no real side effects. He said that he was in Boston the week before for a conference and he saw two similar cases out of California, but they weren't Mylomeningicele, they were MyloCYSTicele. Those were the only two cases, and he had never seen a case like ours personally. (Can we say MIRACLE!?)
The nurses let me hold her the whole time, and even let me carry her two the hallway outside of the operating room. The nurses assured me that they would take good care of her, and then the anesthesiologist took her from my arms. Another nurse took us to the waiting room area. It was 9:30am. It was a helpless feeling, knowing that our baby was going under the knife, so young, with a bunch of unfamiliar people, and without her mommy and daddy right there! I just kept picturing her crying and her arms flailing from being frightened. I don't know why, but I was more worried about them messing up her oxygen intake than anything else. One thing i was really grateful for, was that they didn't hook her up to any machines, IVs, or take any blood until after she was asleep. That way, she didn't feel any pain. In the days prior, i couldn't bare the thought of watching her go through that.
We sat in the waiting room for a while, trying to occupy our time. We attempted to watch 5 different movies, but couldn't concentrate on them. Then we looked up the origin of all the flags that were flying outside. Ha! At least we learned something, right? There was a screen in the waiting room that told us when she was in surgery and when she was being prepped. The Secretary there called us up at 10:50am to tell us that the official start time of the surgery was 10.37am. We went down to the cafeteria a short time after, and coincidentally met up with a Spina Bifida clinic lady down there. She just happened to remember Paul from the last time we were at Children's. Gosh these people are wonderful! We walked back up to the waiting room, hoping for some news at around 12:40pm. I figured they would be calling us in a couple mins letting up know that they were finished. Well, 12:50pm came around, with no new. It's ok...they said that they might take an extra 15 mins after surgery to clean her up. Soo...I set my new mental clock for 1pm for the surgery to be done. 1pm came and went again. AHHH!! Now I starting to get very anxious! The secretary didn't call us over the loud speaker until 1:50pm! I JUMPED out of my seat to see what she had to say. She told me that the doctor would be meeting us in the private waiting room in a couple of mins and that she would call us back up when they were ready. I was relieved, but really nervous too, because Dr. Maugans originally said that he would meet us up in NICU. Everything went through my mind. What if they weren't done with the surgery, and something had gone wrong?! Gosh, the 5 or so mins that we waited in the private waiting room seemed like a life time! Finally, when Dr. Maugans came in, the first thing he said was, " The surgery is done and she did great." AHH...what a relief! He brought a digital camera in to show us her spinal cord! It was amazing! He said that her spinal cord was actually in the shape of a trumpet, which is common, but he hadn't originally thought this was so. The picture of the spinal cord was really white and clean. I was surprised. He also said that, with the spinal monitoring, they thought (though it's not COMPLETELY accurate in babies) that all of her movements and bowel and bladder control remained the same. Dr. Maugans said that, though she may seem to have less control in the next couple of days, that he predicted that everything would return in a couple of weeks. He drew us a picture on the dry erase board showing us that her spinal column in that area was really shallow compared to normal. He said that he didn't foresee any problems since there was a lot of tissue, muscle, and skin over top of spinal cord protecting it. He also said that she didn't actually have the MyloMENINGOcele, that it was a MyloCYSTOcele. He explained that this was actually better because there was no fatty tissue (as he has previously predicted) surrounding the spinal cord, and there was less of a chance for her developing Tethered Cord, and Hydrocephalus. YAY! Even better news than we had hoped for! He said that he had never personally seen a case like this before. The MyloCYSTOcele ( http://journals.lww.com/neurosurgery/Abstract/1985/01000/Terminal_Myelocystocele.8.aspx) very rarely occurs with the Arnold Chiari II. The two cases that he had seen in Boston, that he had talked about earlier in the day, were exactly like this. We were so ecstatic! When Dr. Maugans got ready to leave the room, we both jumped up and thanked him! I thought Paul was going to give him a hug! Paul even said to him, "I feel like you are our new best friend!" He is such a caring doctor, and shakes your hand with both hands every time he greets you. It gives me goosebumps just thinking about how wonderful everyone was. God definitely took care of us!
When we walked out of the room the secretary told us that there was someone waiting to see us. I looked around the bend, and it was Maria and Mimi, the Family i use to work for! I almost jumped into Maria's arms, I was SO HAPPY! They had brought us a card, gift, and prayers! Ha, when we left to go up to the 4th floor where Claire was, the secretary said, "You are a sweet couple. I am happy for you!" It took us by surprise, because we only talked to her a couple of times throughout the day. I guess you never know when people are paying attention to you- all the more reason to be a witness of Christ's love at all times. :O)
Paul and I were both on cloud nine. We were almost skipping up to the 4th floor (NICU). We were told to wait in the waiting room until a nurse called us back. We waited an hour before we went to ask what was going on. The receptionist told us that Claire had been in there for an hour already. Oops! When we finally saw her, my heart about broke in two. For the two weeks prior, Claire only let out one small burst of a cry when she was hungry, and then waited patiently to be fed. However, I could here her crying/ whimpering from down the hall as we were walking in...and i KNEW it was her. (she was actually laying on her back when we walked, which we had never seen before!) It's funny how you know your child's cry. It was a sad sad whimper, that was filled with pain. I wanted to pick her up so bad, to "make it all better" but i didn't want to move and hurt her either. The nurse said that she could eat if i wanted to feed her. I did NOT want to hurt her, so I had the nurse hand her to me while I sat in a chair. We were told to leave her flat for 48 hours, even while she ate. Claire acted as if she didn't know how to eat anymore, which was a drastic change from the two weeks earlier. She was so drugged and out of it. She was also REALLY puffy from her IV, not to mention the two monitors plus two IVs she was hooked up to. She had red dots all over her arms and legs, and 6 scabs on her head from the Spinal monitoring. It brings tears to my eyes thinking back to it all. I think God just puts you into survivor mode when you go through things like this. Only when I think back now am I emotional about it. I woke up every couple of hours to make sure that she ate. I also got more brave as the night went on, since the nurse that was on duty was SO ROUGH with handling her. They only gave her a small amount of morphine that night, and then Tylenol every 4 hours after that. Paul and I were able to sleep in the same room with her. They had a VERY small pull-out love seat, which we found very comfortable in our exhausted state. They also had a nice bathroom with shower in our room. Claire's IValarmed every time i held her that night from being kinked. The nurse would come and fix it, and it would go off 2 mins later. It was ridiculous. Needless to say, we didn't get much sleep that night. I woke up at 9am to Dr. Maugans, two other doctors and a couple other nurses in our room checking Claire's back. Oops! At least Paul was awake. The doctors said that Claire's incision looked good, and that as long as she was eating, she could probably leave by Friday. WHAT A SURPRISE since we had been told that we would be in the hospital for AT LEAST four days. Later that day we met with the head of the Spina Bifida Organization in Cincinnati. We were able to ask her a lot of questions since her daughter had and is going through it all. Claire looked and acted a lot more awake, and was more herself by this time. Thank goodness!
The biggest problem that we faced in the hospital was keeping her incision clean. Since it is so low, almost every time she pooped, it would go up under her bandage . They even tried using these things called " mud flaps" to keep it from going up there. As a result, the nurse had to change Claire's dressing EVERY TIME she pooped. It was AWFUL! She screamed so so hard every time they ripped that tape off of her back. She had little fuzzy hairs there, and those were all ripped out, like a wax. She still ( almost 3 weeks after surgery) has sores from them ripping the tape off of her back. Later on that day Claire's leg was really swollen because her IV that was there was finished. They called in a PIC (sp?) nurse to redo her IV. I really didn't want her to have to go through that again, but she had two doses of antibiotics left. I told our nurse that I wasn't going to be able to look. She said that she would stand there and play mom if i needed her to. But, I couldn't run away from my baby when she was in pain. It took the pic nurse FOREVER to find a vain in her puffed up little arms. She put a turnicate on both of her arms a couple of different times, and used a special light to try to find them. We had "suggies" (sugar water) that we used to dip Claire's pacifier in an attempt to keep her happy. The first IV didn't work, so she had to do it a second time. Our super tough Claire didn't even cry! Ha...I was more upset than she was!
The rest of the day was just full of feeding, changing diapers and meeting with the Physical Therapist and breast feeding nurse. The PT was still impressed by how well Claire was doing with her leg movements, and told us to keep up the leg exercises. Friday I was SO excited to get out of there, because I didn't want Claire to be poked and prodded any longer. PLUS it meant that she would no longer need her bandage on her back. That would save her a lot of pain! However, one of the doctors told us that Claire was "no longer in pain" and that she " didn't need tylenol anymore". They said that tylenol is bad for the liver and they didn't want to damager hers. I was shocked! How in the world could she not be in any pain only 2 days after her surgery?! I listended to them, but I was NOT happy to follow their orders! Looking back, I wish i would have gone ahead and given her just a little bit of something after we had gone home, because she was still in a lot of pain. Oh well. We were actually informed on Thursday that Paul's Parents were flying into Cincinnati Friday night. It was a surprise for both them and us!
Charismatic Claire!
