New Photos

We went back to the cardiologist today and Isabelle has gained enough weight that they decided not to admit her back into the hospital, which was a huge relief to us. We still have lots of Doctor visits and weekly weight checks to make sure she is gaining weight, but for this week, things are looking good.

My friend has a boutique and makes baby items. She asked if she could use Isabelle as a model for her website, so we dressed her up in a bunch of different things from her boutique. Here are some of the pictures. She is so smiley normally, but the minute we started taking pictures she got so mad and cried most of the time.

Another Update

So we went to the cardiologist twice this week, because they are concerned that Isabelle hasn't been gaining enough weight. On Monday they had me start combining formula with breast milk in her bottles to up the amount of calories she is getting per ounce. They were hoping this would help her gain weight, but when we went back on Friday, she had actually lost weight. Basically her heart is overworking, trying to drink as much milk as she should be getting. At this point, they said an infant should be drinking between 18-30 ounces per day. On a good day, Isabelle is drinking about 13-14, and that requires a lot of effort. So they put her on another medication that will hopefully make things a little easier on her heart and we go back to the cardiologist next Friday. If she hasn't gained enough weight by then, they are going to take her straight from the Dr. office to the hosp. and readmit her and have her tube-fed at the hosp. until she gains enough weight. We're praying that she starts gaining so that she can stay at home, although tube feedings is completely safe and saves the baby a lot of energy that they use trying to eat. Still, I want her at home and am not excited at the though of having to figure out babysitting for Eli and making the trips back and forth to the hosp. everyday. The hardest part about driving back and forth to the hosp. was that whether I was coming or going, I was always leaving one of my kids behind and it made me feel awful. It is so nice to have them both under one roof, even if I am having a hard time getting used to having 2 kids!

Isabelle and Grandma Frazier

Photo Shoot

Another really long week. Mom got here this Monday and I don't know what we would have done without her (or what we'll do when she goes!). We've had lots of Doctor apts. everyday, had to reschedule apts and had emergency apts. Thursday Isabelle's pediatrician noticed that her oxygen levels were too low, so we went to the cardiologist again Friday morning. He said that too much fluid is making it through the hole, into the left chamber of her heart and then onto her lungs. So they started her on a medication that should help her flush out that extra fluid, rather than send the fluid onto the lungs. We have an apt. first thing Monday morning to see if it is working or not.

Eli and Grandma - Mom has been playing with Eli while we go to all these Doctor apts. Besides having to share a room with him (and make room for him when he leaves his bed in the middle of the night and crawls in with her), she's been cleaning our house, grocery shopping for us, cooking, washing dishes and all sorts of things that make me really sad that she is leaving on Sat. After that, I'm a little afraid of how I'll manage the two, the appointments, cooking, cleaning and all that other stuff that needs taken care of.

We had a little photo shoot with Eli and Isabelle in her Valentine's outfit mom got her, so here are some of the pictures. Eli refused to wear his outfit, so he's showing off his muscles instead.

She's Home - Finally!

I can't remember what I have already written, but Isabelle was discharged and came home on Tuesday! It has been great to have her home, although Eli's still trying to get used to her. We have lots of follow-up appointments scheduled with neurology and physical therapy to continue to monitor her and make sure she is doing what she is supposed to be doing. The unexpected news is that Thursday I took her to her pediatrician a regular appointment and he heard a heart murmur that he was concerned about. He got us an apt. with cardiology the next day and we found out that she has a hole in her heart. What this means as far as treatment goes, we're still waiting to see. There is a possibility that the heart will heal itself, although because of the size and location of the hole, the cardiologist didn't think this would happen. Sometimes children with this heart problem are able to treat it with just medication and sometimes it requires open heart surgery, to go in and put a patch on her heart where the hole is. We're not sure yet what Isabelle will need, the Dr. said that we will need to wait and closely monitor her the next 6-8 weeks to get a better idea of what we will need to do to treat her.

She is such a sweet little baby, loves to cuddle, barely cries and smiles a ton and sleeps so well. We just hope that all of these health problems will be resolved soon so she can just go back to being a little baby and not have to continue to be poked and prodded. Here are some more pictures of our last few days in the NICU and her first few days at home.

Isaac's mom, Virginia, and Isabelle. She has been a huge help the last few weeks, taking care of Eli almost daily so that we could go back and forth to the hospital. It was so nice to know Eli was with people he knew and was well taken care of.

My Aunt Deedee flew down to help for a few days and it was so great to have her here. She watched Eli and spent hours at the hosp. with me and Ellie. Isaac said she is at the top of his "cool list", which (according to him) is apparently a very coveted position. It was so nice to have an extra set of hands.
The last day with the head IV.
Eli enjoying some quality time with dad. Isaac took Eli to the Children's Museum, one of Eli's favorite play places.

Eli meeting Ellie for the first time. So far he hasn't paid her too much attention and he's trying to figure out where she fits into our family. It has been a rough transition for him, having us gone so much and having so many Dr. visits to always take her too, we've missed spending time with him. It's been harder to find the balance of taking care of 2 kids, with 1 of them so sick all the time.
Despite all the Dr's poking her and health problems, she is such a happy baby and always smiling.