Monday, June 30, 2008

Day Eleven

I can not believe we have been here for eleven days. I can't wait to go home. Today Ella is doing good she is off of all of her IV's she is getting better quickly. A nurse had mentioned maybe Wednesday she could go home but we have learned not to get our hopes up. She is only on some oxygen, has one drainage tube left and a couple of oral medications which she will need to take at home also. The girls are here now they will be staying with us probably until we get home. They got to visit with Ella today. I am glad they are here we just have to keep them busy while we are here. There is all kinds of different things for siblings here at the hospital. We are going to take the girls to dinner now. 

Day Ten

It is now two days after her surgery they will definitely take her off the vent today. We came in in the morning and she is still sleeping. As soon as she wakes up they will take the vent off. The doctors took some of her tubes out and wires off. About three hours went by and she is still sleeping . We are eagerly waiting for her to wake up . We have been trying to get her nothing is working. By about 5p.m. she finally wakes up. Yeah they took her off her vent she is alot happier now. She can have a bottle of pedialite and then for her next feeding she can have a bottle. It is about 7p.m. and we are going to leave the hospital for dinner. We have gotten to know another couple that has a baby here. We are going to go to dinner with them to this thai restaurant that is in the eastern market. Our new friends are Eric and Michelle they are great we have alot in common with them.  We had a good time at dinner the food was great and it was good to get out of the hospital. It was fun getting to know our new friends they have four girls, their youngest is here she just had a heart operation on Thursday she also is doing well. After dinner we went back to say goodnight to Ella she is resting peacefully.

Day Nine

Today we woke up early to see how she is doing after the surgery. She seems to be progressing very well. The surgeon wants to lower her medications and take her off the vent.  She is still very drugged and has to wake up more before they take the vent off. Hours went by and she is still sleeping plus she has alot of fluid in her so the doctors want her to get rid of some of that fluid before they take the vent off. Maybe they will do it tomorrow. We pretty much have just been hanging out today nothing too much is going on.  We are going to bed early we will be back in the morning. 

Day Eight

SURGERY DAY! We have been waiting all week for this. We spent the morning holding her, she seemed very relaxed. They would bring her down to the O.R. around 2p.m.  Her grandparents all came by to hold her before her surgery. They took her to the O.R. at 2p.m. and we gave her some kisses before they wheeled her in. Now we will wait for about 7 hours. Today will be a long day. All of our friends and family have given us so much support and prayers we really have appreciated it. And I know those prayers have been answered. We spent our day in the waiting area in the O.R. a nurse came in to update us when they stopped her heart, when the surgery began, and when they started her heart back up. The doctor came in about 5 hours later and said it all went well, the nurses were closing her back up and we could see her in about an hour. When it was time to see her I felt nervous I was not sure how she would look. But she looked really good a lot better than we expected. The nurses were bringing her up to the pediatric ICU where she will recover the next few days. About an hour and a half later we were able to visit her, by now it is around 9 p.m. She really is doing well they said. After they started her heart again she had an arrhythmia so they would just monitor her trough the night. It was hard to leave for the night but we really needed to rest. We would return early in the morning. The surgery is done now we will be praying for a fast recovery. We hope to bring Ella home soon.

Day Seven

Today we will meet at 1 p.m. with the surgeon, he will explain how he will do the operation. We were hoping they would only operate on the coarctation and have to work on the VSD. Sometimes a VSD does not require surgery because it will close on its own. Ella's hole however was very large and did not have a likelyhood of closing. With having to do both procedures it would require open heart surgery which made us more nervous. All of our parents came to meet with the surgeon. After meeting we felt real comfortable with the surgeon and what he was planning on doing. He was confident that everything should go well. The surgery was scheduled around 1 or 2 tomorrow and she would be in surgery for about 7 hours. Ella had to stop her feedings around 3a.m. to prep her for the surgery. We expect she will be cranky in the morning because she can not eat.

Day Six

Today is wednesday just  a few more days until her surgery. We do not expect many changes today she is doing good still now we will just spend time with her. The surgeons assistant came by to set up an appointment to meet with surgeon he will then explain exactly what he will do in the operating room. We will meet with him on Thursday at 1p.m. We will continue to stay at the Ronald Mcdonald house probably until Ella can go home. The Mcdonald house is an interesting place. Olivia thinks we are staying at Mcdonalds. It is a house with 25 rooms , a couple of living rooms to relax in, a kitchen for everyone to use, a play room and garden area outside. Our room consists of a couple of beds with a sink. We share a bathroom with another room. The house will supply meals sometimes. Different churches or organizations come in to prepare meals and if you are around the house you can come and eat. We pretty much wake up and come to the hospital, then come home at night and go to bed. We don't ever hang out at the house, some people do though they act like they are at home but for some people they are at home, if their kids are very sick they could be here for months. 

Day Five

Today is Tuesday we hope to have a surgery date. We came in to see her this morning se is awake more now, she looks good I get to nurse her now she is eating really good. We have a routine down now we get to the hospital around 8 a.m. come in to visit with her while the doctors make there rounds. When they are rounding we get an update on how she is doing, then we hangout in the lounge for a bit and have breakfast. I am feeding her now so I go in every few hours to feed her. The days really fly by I don't know where the time goes. It is now about five o'clock the surgeons are finishing up there meeting.  The Cardiologist came in the room and says her surgery will be later in the week maybe Friday. Of course they can not commit to anything everything is tentative. Jason and I feel kind of disappointed we really wanted the surgery sooner it just means more waiting. At least she is doing good and getting healthier everyday. The kids came to see her today I was a little nervous how they would handle it. They did just fine they got to spend a little time with her. It was good to see the kids we really miss them. My mom got in town last night so she is at the hospital with Jason's parents also. It nice to have some company today.

Day Four

In the morning in the family lounge people start waking up around 6a.m. and everyone fans out in the hospital to see how their children did through the night. Today is Monday we were anxious to see what her Doctor and Cardiologist had to say. We were eagerly awaiting for a surgery date. We just wanted her heart fixed so we could work on getting her better to go home. When we went to her room that morning she looked good.  Better than she had previous days anyway. I got to hold her and feed her myself that was exciting and she loved being held. The doctors came in and said she looked good and she was ready for her surgery. The Cardiologist told us that the surgeons hold a conference every Tuesday afternoon to discuss the upcoming surgeries and after that meeting they should have her surgery date. One thing we have learned around here is that they can not guarantee anything even if she has a surgery date. Unless they are wheeling her down to the O.R. they can not say for sure when she will have her surgery.  Right now she is stable so if a baby comes in that needs immediate attention she would be bumped. We are hoping her surgery would be Wednesday,now we will wait until Tuesday to find out. It seems like alot of waiting .  We got a room at the Ronald Mcdonald house for the night I can't wait to get some sleep. 

Day Three

We arrived back at the hospital around 8 a.m. feeling more rested than the previous night and a little more relaxed about everything happening. The doctors made there rounds that morning and decided to aggressively turn down her meds and they planned on taking the vent out . She was moving toward the right direction for surgery. Later that day they took the vent out and started giving her bottles shortly after that. Now she was a happy baby. That night we had to stay in the family lounge. We were trying to get a room at the Ronald Mcdonald house but they were full. We would try again tomorrow. The family lounge is a very interesting place. There are quite a few people that stay. Every night people grab a pillow and blanket and stake out there area to sleep. Your options are a recliner, a bench that is slightly padded, or the floor.  Around midnight the lights are dimmed and everyone tries to sleep. I told Jason it felt like an adult lock-in. We chose the bench to sleep on. We would wake up in the middle of the night to change positions because our body was going numb. The morning could not come fast enough.

Day Two

After a long unrestful night we did not know what to expect for today. She was responding well to all of her medications so the doctors began lowering her dosages down. The doctors goal was to ween her off of as much things as possible because the surgeons would be more apt to do the surgery sooner the better she seemed. Today is saturday and her main doctor and cardiologist would not be in until monday and we were hoping to get a surgery date. By the end of the day we needed a break and some sleep. We went to dinner at my parents and spent some time with the kids then we went home to pack some thing and get a little rest.

Sunday, June 29, 2008

Day One

Nine days after Ella was born she wasn't hardly eating and was not awake very much. After 24 hours of this we worried there was a problem so I took her to her pediatricians the morning of Friday June 20 at 9 a.m. her temperature was 94 degrees and she was breathing very quickly and looked a little pale. From the doctors office they called 911 immediately. An ambulance came and took her to St. Johns Hospital, we still had no idea what was wrong. At the St. Johns Emergency Room they decided to intubate her immediately, because of her rapid breathing they were concerned she may tire out and stop breathing, by now we were told it may be an infection and they were going to test for meningitis. After many attempts to get an iv in her (having trouble finding a vain) doctors then moved her to another part of the hospital where they put the breathing tube in but before they did they asked us to leave the room and we were met by the chaplain. It was a very difficult time. After we waited a while a nurse came in and told us to go upstairs to the pediatric department.

When we arrived at the pediatric department waited awhile longer then a doctor came in and said it was either an infection or a heart condition, a cardiologist was checking her. All the Doctors seemed very concerned which made us more nervous. We were told a number of times that day that she was very very sick.  We did not think she could have a heart condition, but within minutes the doctor came in and told us it was a coarctation (a narrowing of her aorta) which caused her to not have enough blood circulating throughout her body. When she was in utero her ductus (a blood vessel that connects the aorta to the pulmonary artery) which was opened and within days after babies are born there ductus closes but when her's closed, because of her narrowing of her aorta, she was not getting enough circulation which was causing her to be sick. There is a medicine that can be given intravenously called prostaglandins which will keep that ductus open so she will be able to have enough blood circulating to keep her stable. Also this would give her time to recover if any of the organs that where not getting blood got damaged in anyway but they were worryed that it was to late to re-open the ductus and they would have to do an emediate surgery. By now Jason, his mom and dad, Sharon and Melanie were all at the hospital. Her condition would require surgery which St. Johns could not do, she would have to be transported to either Children's Hospital downtown or U of M in Ann Arbor. We had minutes to decide, we chose Children's because we've heard they were good, they are closer to our house plus they specialize in children. St. Johns called the hospital to make sure they had room and to set up the transport. The nurses told us that children's would send a team of doctors and nurses to pick her up and transport her to Children's. Jason and I went down to the hospital ourselves followed by his parents and Melanie and Sharon. Once we arrived at children's hospital the girl at the desk said the transport team just arrived but it would be a little bit before we would hear anything. We went to the family lounge to wait Jason parents were already there and so was Pastor Terry Carlson. After about an hour Dr. Bedard (the head pediatric doctor in the NICU) came to speak with us and she moved us into a room for some privacy. There she told us that the prostaglandin looked like they were working but the Cardiologist and other doctors were still looking over her to determine what to do and how soon they needed to do it and also that it would still be awhile before we could see her. 

The Cardiologist came in and explained her condition she had the coarctation and also a VSD (ventricular septal defect) also called a heart murmur or hole in the heart. She would require surgery with in the next few days after she had got her strength back and when all her other organs were back to normal (they got pretty beat up from the lack of circulation). After about four hours of waiting we got to see her she looked how she does in the photo above. It was very hard to see her like that, it was the end to a very, very long day. We still did not know everything they were going to do but we were feeling better than we were throughout the day. They did get her pretty stable but she was still in really rough condition and we could not bare to leave her all night. Jason and I took turns by her bedside through the night and we would rest in the family lounge when we needed a break (the family lounge is a story in and of itself we will share more of that later).