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.

Introducing Isabelle Winter Robinson

For those of you who haven't heard, Isabelle Winter Robinson was born last Sun, the 25th. She weighed 6 lbs. 10 oz. and was 20 inches long. It has been a long week, with her immediately being rushed to the NICU with breathing problems and then being transferred to another hosp. for an infection and seizures. She is doing better and to tell the short story, will hopefully be going home next Tues. or Wed., and will have to continue outpatient care with a neurologist and a physical therapist. She's doing better than expected though and is so sweet and perfect. We can't wait to take her home. It's been an emotional roller coaster, making trips to and from the hosp., arranging babysitters, trying to spend time with Eli, etc. We've been so lucky, we've had so many people helping us and offering to help that we feel truly blessed. Isaac's mom has been able to help taking care of Eli, my friend Katelyn has been there for anything from babysitting to cleaning my house while we were at the hosp (how great is that!) and church members have been bringing over dinners and calling non-stop, offering to help with everything from babysitting, to going to the grocery store for us. My aunt is flying in on Sun. to spend a few days with us and mom will also be flying down soon to stay with us for a week and a half. We've been so grateful for all the help and support we've had this last week.

We're calling her Isabelle, Ellie for short. Her middle name is Winter, for my mom (Winter is my mom's maiden name). Here are some of my favorite pictures from this week:

Isabelle and daddy
All stretched out! Finally some room!
The most upset I've ever seen her! She rarely cries and when she does, it has never lasted even a full minute!She's been poked and prodded all over - the IV in the forehead was the hardest for me to see.
Day 1 - so many tubes to help her breathe
Today - eyes wide open! Finally! She'd been sedated with medicines for so long that we mostly saw her sleeping.

Pajama Pictures

The Robinson family - we couldn't get a picture with Eli smiling and he refused to put down his new Sherriff Woody toy. The string pulls in the back and he says different phrases. Eli takes it to bed with him every night and I hear him pulling the string and saying with Woody "yee-haw", and other phrases. It's pretty cute.

The girls - Dodi, Kennedy and I.

The only picture of Eli smiling - we were trying to get a Holm family picture, but Eli didn't want to leave the shot.

The grand kids - Kennedy and Eli's patience for picture taking was up by that point (and we'd just started).