first
July 5th, 2005. Published under parents. No Comments.
Elizabeth Maxwell was born on Tuesday, July 5th at 11:47am.
Weight 7lbs. 4.5 oz.
Length 17.7 inches
In the delivery room she came out screaming. The Pediatric Cardiologists checked her out, wrapped her up in blankets and gave her to dad. Shortly after we met her, she was taken to the NICU to be stablized and checked out. About an hour and a half later she was transported to Children’s Hospital. We were over whelmed with excitement. I can remember looking to my left, my eyes barely opened, seeing Daniel’s brown eyes and focusing a little beyond his face was Ella. I actually am a bit dopped up right now, so it’s taking time for me to recall everything that happened. After recovery I was moved up stairs to a room and Ella was getting settled in her new room.
On Wednesday, we went to visit and she was alert and cute. She pooped so her dad could clean her butt for the first time.
Her surgery was supposed to be a week after she was born, but they moved it up to Thursday. We got to see her before her surgery and she was crying and making faces. She was preped for surgery for about an hour, they made the first incision around 4 in the afternoon. By 9pm they called and said she was complete, so we went to see her after surgery. This was the hardest time because she was knocked out and seemed very unstable.
Today, Danielle was discharged from Good Sam. So, we sent most of the day at the hospital with Ella. She was sleeping the whole time, but responsive to touching her feet and legs. Daniel got to see her opened chest and her heart. Her coloring seem good, and her swelling went down some. At one point she opened one of her eyes to see what was going on. There is an array of mechinary and medicines helping her keep stable.
Her spirit seems strong, she is beautiful. We miss her.
We’ll share pictures.
Love, Daniel and Danielle
second
July 9th, 2005. Published under parents. No Comments.
Today, Ella had her umbilical leads removed. She also was peeing a lot, which is good, because it reduces her swelling. The more she pees the sooner they will close her chest. They are estimating that she will have her chest closed tomorrow or Monday. The nurse she had was awesome, she took really good care of her and answered a lot of our questions. She seemed more alert and when I was putting on her lipstick (vasoline) she puckered her lips. Each day seems to be a step closer to her coming home.
third
July 10th, 2005. Published under parents. No Comments.
Hi all,
today Ella was great. The doctors are still backing down on the medication that keeps her blood pressure high, and she seems to be reacting good to the change. She also has been peeing really well, and she is less swollen. She actually opened her eyes a few times while we were there. She rolls them around and sometimes peeks at you. Daniel read her an article on Stem Cell research and one on Mars. She was moving more than she had all week. Tomorrow the doctors will close her chest up. There are usually some ups and downs with the procedure, but can you blame her?
She loves to have her head rubbed and smiled once while we were talking to her. At one point Daniel was tickling her toes and she jerked her leg away from him. This makes me proud that she is going to be straight forward with her feelings (like mom). It was a really good day for Daniel and I because we got to know more about her personality and help out with her care.
I have been backing off the meds, so hopefully this post is more legible.
Take care and thanks for your comments,
Daniel and Danielle
PS- some new pics from today.
fourth
July 11th, 2005. Published under parents. No Comments.
Just took the meds, so I am going to try and get this out before it kicks in. Ella’s chest was closed this morning with great success. She look better and they are slowly reducing her medications. In a couple of days she should have her chest tubes out. She will be moving around more once the meds wear off. It will be nice to finally to meet her and get to know her. We have some updated pictures, so enjoy.
fifth
July 13th, 2005. Published under parents. No Comments.
Over the last week or so, the whole lot of us have weathered some fairly heavy stuff. Most came by no surprise, since Danielle and I have known for months the types of things Elizabeth would be facing after her birth. Thursday night and most of Friday, immediately after her surgery and for many hours after that, Elizabeth’s blood pressure and other critical measures were very unstable; and night before last she lost enough blood for the medical staff to be concerned. Still, much of this was at least implied over the course of months of consultation with everyone from the obstetrician to the pediatric endocrinologist.
Today, we were surprised to hear that one of Elizabeth’s cardiac lines was removed. The medicine it had been delivering was simply added to another line; but still, every little thing removed, every little thing that isn’t a baby that’s taken out of her bed, the closer she is to recovery. She also surprised us with a lot of activity, between short burst of heavy respiration as she tried to get rid of some bile in her throat, to the animation of her facial features as she apparently tried to cough the bile up, and tried to cry. Hers was a pitiful, impotent, silent cry; but Danielle and I heard it. She had even showed gumption enough to have almost completely pulled out one of her nasal lines, so the nurses have her left hand restrained.
With so many small happy surprises, the last surprise hit like a shockwave. Danielle’s dad had been told or given the impression that Elizabeth’s heart would probably need replacing by a transplanted heart some time shortly before or after reaching early adulthood. I said, “No, that can’t be. They wouldn’t have been talking to us about her fertility issues [as a result of Turner's Syndrome] if she wasn’t going to be healthy enough to carry a child anyway.” I was wrong.
You see, at the end of the third operation (the Fontan), Elizabeth’s cardiopulmonary system will have been restructured to be as efficient as it can be with the available tissue. Her right ventricle will be pumping blood to and from the body, normally the job of the left ventricle; and the residual pressure will be used to get blood to and from her lungs. Since neither ventricle alone is well adapted to pump against the pressure of the whole blood system, eventually the right ventricle, flying solo, will start to fail. The failure will likely be gradual, but it appears nearly inevitable.
This means that, eventually, we will likely be put to the task of deciding whether to subject Elizabeth to what some people call the horror of organ transplant surgery and recovery from such, or whether to make Elizabeth’s death as comfortable as possible. How do you ask a teenager if she wants a high probability of years of hospital visits and copious amounts of medicines, with a general feeling of illness the whole while; or the certainty of her life ending? I don’t know. I bet none of us does.
We have decided that the best thing we can do is to love her throughout her years, and figure that out when we come to it.
sixth
July 15th, 2005. Published under parents. No Comments.
I just wanted to yell “stop” at all the doctors and nurses yesterday. My daughter’s heart began to beat at 260 beats per minute. She had surgery about a week ago for Hypo-Plastic Left Heart, she seemed to be slightly progressing, then yesterday I was standing next to her. We were listening to Mogwai number 8, I remember checking the cd player because I really liked the beat it had. All the sudden her blood pressure, heart rate and all the million numbers that fluctuate on her monitor, began to go crazy. She lay in her tiny bed flat, didn’t move at all. I backed away when the doctor came running in followed by 4 nurses. Before I knew it, I was stretching my neck to look around all the people, to notice that her legs flinched and her fingers were blue. They gave her a drug, forgive me, I don’t remember the name, and it brought her heart rate down. She stabilized her and she was back on the road to recovery when we left yesterday. This morning the doctor called again, she had another episode (for a lack of better term) and they are going to do a couple things that they think might be causing her heart to react this way. I just wanted them to leave her alone, let her move around freely and cry. I have a daily struggle to convince myself that this is the best way for her, we have made the best choice.
I remember when my first son Nicholas died. I didn’t want to hold him or even see him. I did eventually, I knew I would grow old regretting, if I didn’t. The fraction of time I got to know him was so small that I have a hard time recalling it all. Now I grow old with thinking, what if, what if we would have fought. I just want to know, that I will not grow old regretting this and that if Ella isn’t going to be here long that she wasn’t in a unnecessary amount of pain and longing for the touch of her parents. There is no way of knowing. This hope that I search for can’t be given to me by anyone, other than her, I just hope that each day I see her it is restored.
seventh
July 15th, 2005. Published under parents. No Comments.
Elizabeth’s tubes that were draining the fluid from around her heart, after her surgery, were taken out today. Also, her iv’s that went directly into her heart were also taken out. But to top everything off, we found out that she has SVT (a condition of the heart that causes rapid heart beat). This is heritary but can be controlled by medications until she gets old enough to have it corrected. At least they were able to find out what caused the problems last night and this morning.
Her nurse tonight told me that she will be able to sleep on her belly some now that the tubes are out and we should be able to hold her soon. It was a busy day for little Ella Bella and she slept for a long time after getting her tubes removed but I was there cheering her on and holding her hands while they removed everything. So for now we shouldn’t be getting anymore surprises and on our home.
eighth
July 17th, 2005. Published under parents. No Comments.
As of yesterday, they took out Ella’s breathing tube and now have her on just standard air. The are slowly weaning her off that and hopefully she’ll be totally off it in a day or so. She also has reduced her amount of medication. She also has been getting some food through her feeding tube, she seems to be enjoying. We got to hold her yesterday; the first time since before her surgery. She seems to be doing a little better each day. Thanks to the excellent doctors and nurses, Ella is growing and adjusting to her surgery smoothly. We’ll keep you updated as to her next steps.
ninth
July 18th, 2005. Published under parents. No Comments.
Elizabeth has been taken off the forced air oxygen and is just on standard oxygen. She also had her IV taken out of her right arm. This IV was one that measured her blood pressure, so it’s a big step. She will possibly be moved to a step down unit today or tomorrow. Things are moving fast and hopefully she will be home with us soon.
tenth
July 19th, 2005. Published under parents. No Comments.
Elizabeth had her Central IV removed from her leg. She also is off all her drip medications. She has a crib, exciting, but not very parent friendly. I think the nurses have her days and evenings mixed because she has slept for the majority of the day and they said she was awake for most of the night. Soon they will have OT come in and try to feed her with a bottle. My youngest son had to have help feeding, so this is old hat for me. She’ll catch on, she’s going to be a good eater. She will be moved from the intensive care unit tomorrow. Before we know it, she’ll be home, waking us in the middle of the night.
Ella told me that she is not interested at all in Cincinnati’s sports teams. She doesn’t care for the Red’s performance this year.