The Hatfield Family Blog: Savannah's time at The Children's Hospital.

I forgot to mention in the last post that all this happened on Daniel's Birthday. We arrived at the Children's hospital around 7pm that evening. The NICU was closed at the time due to another baby having some complications but they were nice enough to let us in for a few minutes to visit with her so that we could see that she was ok. She was settled in and resting well. We were told that no decisions had been made on when the surgery for shunt placement would be and that as soon as a neurosurgeon rounded on her they would call us. So after about 15 minutes we had to leave and go find us a hotel for the night. It was so late and dark and we knew nothing about B'ham so we just drove a few blocks and pulled into a Marriott hotel. It ended up being a really really nice hotel and since it was late and we had not eaten yet we just paid the $250 for one night and left it at that. But the room was amazing. Not that it mattered. We didn't get much sleep that night. We were so nervous, scared, uneasy, you name it, we felt it. We knew nothing of what the surgery would entail. No one had told us anything other than the fact that our daughter had fluid on her brain and something needed to be done about it. We called at Midnight that night to check on Savannah and the nurse was super nice. She answered alot of the questions we had about how things worked there. The NICU hours were 9am to 2pm; 5pm to 10pm; and 12am to 7am. The times they were closed were for shift change. Well we received a call the next morning from one of the neurosurgeons explaining to us that Savannah needed surgery and that she needed that day, soon in fact. She explained that Savannah had been taken for a CT scan earlier that morning and it showed that the grade 4 bleed had blocked the pathways where the fluid normally would go. She then told us that she would need a Subgaleal Shunt which is temporary and that the reason she was receiving this one instead of the Permanent VP (ventricularparataneal) shunt is because she was still too little. She needed to be at least 4 lbs, preferably bigger in order to get the permanent one. So they were going to be taking her to surgery ASAP. Then we had to talk to the anesthesiologist on the phone and she let us know all the risks which are pretty much the same as with anyone and we had to give consent. They promised us that they would not take her down to surgery until we got there. So we checked out of the hotel, loaded up all of our stuff, and hurried to the hospital. My parents and grandparents were there when we got there and Daniel and I went in to the NICU to see Savannah while they waited in the waiting room. We visited with her for a little while and we were able to meet the neurosurgeon who was going to be perfoming the surgery. Dr. O, although lacking in bedside manner, is chief of neurosurgery and has people from all over the world who come to learn and work under him. So although we did not care for his dry personality, we loved the fact that he was so qualified. I didn't want him or need him to be my friend I just needed him to fix my little girl. Soon after speaking with him they brought the portable bed with all the portable equipment. They moved her to this bed and told us to follow them. On our way out to the elevators my parents, grandparents, and preacher (at the time) and his wife were able to see her. We rode the elevator down and then walked down the long halls. (they probably just seemed long at the time). They took us into this holding room where we would wait for all the docs and nurses to get prepared for her. We waited what seemed like an eternity. Daniel and I both were so nervous that we later found out that each of us had to lean against the wall because of almost passing out. Seeing your daughter in this situation and knowing that she would be leaving to have surgery when she was sooooo tiny was the hardest thing ever. Especially with the type of surgery it was. As we were all standing there waiting for the last of the people to come the respiratory looks down and tells us that she had never turned on the ventilator and that Savannah had been breathing on her own that whole time. And her Sats were high. This was a good sign. But since she was about to have surgery they didn't want her getting too tired so they turned it on. Soon the rest of the crew showed up and they rolled our precious little girl away. Both of us just stood there and cried. It was so hard to watch them roll her down the hall. So we went to the waiting room and Daniel went back upstairs to tell everyone to come down to that waiting room. We were told that this surgery would take a couple hours and that they would call as soon as the surgery had actually started. So I left to go pump Savannah's breast milk down in the lactation center and my mom went with me. We were gone for about 30 minutes and when we got back Daniel said they had just called him to let us know that the surgery had started. So we got comfortable for the long wait. It wasn't 5 minutes later and Dr. O is coming out tapping me on the shoulder and says "Mr. and Mrs. Hatfield...over hear" and points to the corner. He has this horrible look on his face. We are all freaking out. My heart was racing and I felt sick. He begins by telling us in all these doctor terms what could have gone wrong with the surgery. He says nothing about how Savannah is doing and still has this very grim look on his face. Finally, I just interrupted and asked if my little girl was ok. He said "the child is fine." So then I was able to breathe again and start comprehending what he was saying. Everything prior to that was just rubbish. (Hey I told you he had a horrible bedside manner but he is a great doctor). So He told us about the procedure and how the subgaleal shunt goes just under the scalp and how she would have a large pocket of fluid under her scalp that would look pretty abnormal. But he said this was a good sign that the shunt is doing its job. He said to give the nurses about an hour to get things back settled before we went back in to the NICU. So we decided to go get something for breakfast. I could hardly eat but we went. Right before we went our preacher and his wife left. They would not have been able to see Savannah anyway because only parents and grandparents are allowed in the NICU during flu season. So we finally go up there to see her, just Daniel and I, and she looked so pitiful. She was still heavily under the anesthesia and she was just laying there all limp and pitiful looking. She had this big bandage on her head. The nurse handed me a little bag with her hair in it that they had to shave. (Her first haircut so to speak). So we sat with her for a couple hours, just staring at her, cause she wasn't moving around like her normal self due to the meds. So we decided to leave, get lunch, and find a new hotel to stay in since she was resting so well. We left and ate lunch with my parents and grandparents. Well while we were at lunch I got a phone call from the hospital. My heart dropped!!! I thought something had happened since they said that would be the only reason they would call. Well it was her nurse and it ended up being great news. They had just extubated her (took her off the ventilator) and she was now on oxygen nasal cannula. So she skipped right over the cpap machine. They said she was doing great and was on very low oxygen. I just wanted to cry. Our little girl is soooo strong. So we left the restaurant and drove down the street to a Best Western. We checked in there and thought it was gonna be a good place to stay because it was just a few exits up from the hospital exit. It had a small fridge to store my breast milk and there was a Walmart across the street. So we took all of our stuff in and then went back to the hospital. Savannah was a little more alert and moving around and her face was so beautiful without that big tube down her throat. She still had the feeding tube in her mouth but they later moved that to her nose. She did great the rest of that day. Well that night the Best Western turned out to be a bust. The fridge stopped working in the middle of the night and I had to throw out a good bit of breast milk. I was not happy. So the next morning. we packed up once again, checked out, and went back up to the hospital. We were told she had done great all night. We were able to see a small pocket of fluid on the side of her head so we knew things were going good. Of course they still had to measure her head daily to keep an eye on it. The average life span of the temporary shunt is like 35 days. So now all we had to do was sit and wait for her to gain weight. Her vital signs were staying good and she would drop her heart rate every now and then but that was to be expected in a preemie and she always brought it back up on her own. That night we checked in to a Holiday Inn Suites. We ended up staying there for about a week. On Sunday we went and found a church and then went to the hospital to see our sweet girl. My parents and grandparents drove up every Sunday and went to church and then came to the hospital with us. Then we went to lunch. On Monday Daniel had to go back to work. You cannot even imagine how hard this was for him. So he got up early and made the long drive to Montgomery and I went to the hospital. I would stay with Savannah until they shut down the NICU at 2 and then I would either go shopping or back to the hotel to rest. Daniel would get home around 7 at night and we would go back up to the hospital and visit with Savannah until 10 when the unit shut down again. This is how the weeks went the whole time we were there, with the exception of when we moved, but I will get to that later. On the weekends we would spend as much time at the hospital as we could. After a week of staying in the Holiday Inn the financial aspect started to add up so once again we were looking for a place to stay. After seeing several nasty places we came across the Marriott towne suites. These people were super generous. They gave us a great rate for a room with a full kitchen. They were amazing. And they had a laundromat. So once again we moved all of our stuff into a new place. Well about 6 days after Savannah's surgery I kept telling the nurse that something was not right with Savannah. She was sleeping all of the time and she kept putting her arms over her eyes like her head hurt. They kept telling me that it was nothing and that everything was fine. Then I told them that I thought her pouch on her head felt smaller, almost gone. They told me that it could happen sometimes and doesn't necessarily man anything is wrong. Well that night, after not feeling right all day, I continued to push the issue. They measured her head and it had gone up a whole centimeter over night. So I made them call Neurosurgery. They took her for a Cat Scan and sure enough her shunt had stopped working. It was blocked and was no longer allowing the fluid to drain. Well the next morning a neurosurgeon came in and stuck a needle into her intracranial space to draw off some fluid just to make sure that there was no infection. They would have to do a different surgery if there was infection. They let it grow for a day and then 9 days after her initial shunt placement they went in a did a shunt revision. This meant another dangerous surgery, another wait in the dreaded waiting room, and another awkward talk with Dr. O. He came out and said that some of the blood from the initial bleed had broken off and clogged up the shunt. This was fairly common. He said it would probably happen again and that the average life of these things was still 35 days. Well guess what? She still has that same shunt in her head. It was put in on October 18th. That is way more than 35 days. And we are still going with it. The recovery was the same. She came back from surgery on the vent but was taken off very soon. So then it was just a waiting game. I think this post has been long enough so I will continue soon in another post.

This picture was taken just a little while after her first surgery..