EllaMax

fourteenth

July 22nd, 2005. Published under parents. No Comments.

If any of you think your telling this face NO, you have another thing comin’.

thirteenth

July 22nd, 2005. Published under parents. No Comments.

Elizabeth has been having some trouble with her feedings. However, when they feed her by bottle she is getting better. She is on a high calorie formula that may be upsetting her stomach. So they are adjusting the amount to see if it helps her digest it better. Other than that she seems to be doing good.

twelfth

July 21st, 2005. Published under parents. No Comments.

Ella is in her new room getting comfortable. She just has to get her feeding down and she will be able to come home. Eveything else is still that same, good. I like that the updates are getting smaller. It means she is better.

eleventh

July 19th, 2005. Published under parents. No Comments.

We have been spoiled, all of us. For days now Elizabeth has enjoyed a steadily improving condition, and just hours ago stared down Danielle’s lens for her first pictures with eyes wide open. Once they’re posted here, you’ll see what we want to see as a healthy defiance in that gaze.

However, yesterday evening, another family whose newest member suffered from a condition similar to, if not precisely the same as, Elizabeth’s, suffered that baby’s loss. I don’t know that family, and nothing I have to say is of any use to them; but if there is anything to be gained from their suffering, it is appreciation: appreciation for Elizabeth’s strength; appreciation for the good will of everyone who’s reached out to us in one way or another; and, not least, an appreciation for the steady stewardship of all the care professionals who have seen Elizabeth through hard times. We are two weeks into a lifetime; but we are fortunate to be this far.

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.

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.

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.

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.

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.

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.