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.
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.
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.
fourteenth
July 22nd, 2005. Published under parents. No Comments.
If any of you think your telling this face NO, you have another thing comin’.
fifteenth
July 27th, 2005. Published under parents. No Comments.
Elizabeth so doing good. She is taking her feeds from a bottle and what she can’t finish she is getting in her tube. She will come home on some oxygen, she seems to like it. She does get worked up when you change her diaper or touch her feet. She starts to cry real hard, until you swaddle her up and hold her til she falls a sleep. So, tomorow we will be getting her medication schedule, feeding schedule and a list of appointment times. There will be nurses coming to the house at least twice a week and one on call 2 hours a day. I guess now is the time to buy her clothes and a bed. She will for the most part be wearing the last fashions for boys, thanks to her 1 year old brother, who was born last June. And once in a while she can slip into a dress and look charming.
So tomorrow Elizabeth will be coming home. So, the care page will probably not be updated as often, due to lack of time.
Thanks for all your words of encouragement.
sixteenth
July 29th, 2005. Published under parents. No Comments.
Well she didn’t get to come home yesterday like we thought. They are doing a study on her this morning, so she had to stay another night. But today we will be braving the voyage. Some new pictures are available from yesterday.
seventeenth
July 31st, 2005. Published under parents. No Comments.
Well Ella is home. She is doing good and we are getting used to the feedings every three hours. She seems to be adjusting to the apartment and feeling good. So now that she is here we can appreciate all the help that we had with her around the clock. As long as we can keep our sleep up we will be enjoyable to be around.
Aside of the usual spitting up, nothing is happening. Her next doctors appointment is August 16th, so we will let you know how that goes.
Til then,
Danielle
eighteenth
August 12th, 2005. Published under parents. No Comments.
Elizabeth is doing great. She is steadily gaining weight and changing all the time. She goes to the Cardiac Clinic for a check up next Tuesday, it will be an all day thing. We have had some difficulty getting her to keep down her feedings. So, we are just enjoying her spunky attitude and her gentle smiles. She is truely a blessing.
nineteenth
September 11th, 2005. Published under parents. No Comments.
It’s been about a month since I last updated. It’s been a littel busy to say the least. Ella is doing good, she weighs about 10 lbs. 4 ounces and is steadly on her way to BIG. Kidding. She seems to be a little more happy in general. She smiles a lot more and seems to be recognizing family. Grandma Holly has watched her (thank you!) a couple of times and Ella seems mesmerized about her dark hair. She is doing good holding her hed up and occasionally tries to roll over. She still has an issue with spitting up, but the docs aren’t too concerned since she is gaining. Tomorrow she goes to the hosppital for an over night stay in the Cath Lab. They will determine if she is ready for her second surgery, I’m guessing in November.
So we’ll keep you updated after we find out more.
twentieth
September 12th, 2005. Published under parents. No Comments.
I’m sitting now in Ella’s room, just listening to her snore. She did really good today. They are thinking that her Glen stage of her surgeries will be in the next 4-6 weeks. Sooner, than we thought. They said she is starting to pout grow her shunt she has in now, and they will actually be performing two Glen’s since she has two veins leading out of her heart. The doctor was more than comforting about her coming off the oxygen after the next procedure and working to get her off the feeding tube shortly after she recovers. We won’t know how to act with a tube-free baby. They said the arteries leading to her heart look great. Tomorrow she will be going home. So, we will be updating this more frequently all the way through her next surgery.