Saturday, November 29, 2008
I asked her cardiologist why delay the surgery. He said they were waiting for the baby things (jaundice, infection, different ultrasound things) to go away. When she was in the NICU she was started on antibiotics but looked like she didn't need them so she was taken off. Now they've started her back on them in case there is infection and we'll have those results in a couple days. We're beginning to think she won't come home without first having her surgery which is good and bad. Good because she needs it, obviously, and we'd very much like to have this all behind us sooner than later. Bad because we want her home to grow bigger and stronger. As I'm being educated with her condition I've learned that although she has a heart disease her biggest problem will be lung disease, not being able to breath. I understood initially there'd be breathing problems but I was under the impression once her heart was fixed her lung problems would disappear. Not exactly. It could take years before she might function at a normal level, possibly never.
I find myself playing the "I would rather" game. I would rather have her healthy than deal with...it's a vicious game that never seems to end happy. So many times through out the day I catch myself.
We know everything she is going through is completely necessary and that it will get better but when we look at her and she's so beat up it's impossible to remember that. She's where she needs to be I know but the other half desperately wants her home, snuggling on my shoulder or screaming at 2 in the morning. I've never changed her diaper or kissed an untapped cheek or held her for longer than 3 minutes. I feel very robbed but at the same time so lucky. There's way to many emotions to sort through. It's quite the roller coaster!
Friday, November 28, 2008
in his chips and the play area. This is the best picture I could get.
Tucker enjoying some much needed Dad time.
After the visit we were off to try
Thursday, November 27, 2008
Here she is snuggling with her platipus, we named it Wilma. I love to snuggle so hopefully she'll be a snuggler.
This is the one and only time she's opened her eyes. We spent half of the whole 4 minutes taking pictures rather than enjoying the moment. Her best picture yet!!
Some of her very special visitors. Bishop Guttery.
Grandma (Chris's Mom) Grandpa (Heidi's Dad)
We got lucky and a spot on the pediatric cardiology floor opened up so we were transferred. Here's Jersey's new home for the duration of her stay. This is where, when she has surgery, she will recover, basically this our home away from home. Look at all her fancy equipment.
After a very long, very exhausting, very emotional day we came home to this, pink balloons tied to forks stuck in our grass!! SO, SO cute!! Thank you very much whomever you are, it really helped to lift our sagging spirits, you have no idea.
Tuesday, November 25, 2008
Jersey had a more difficult time. When she was born there was an army of people around. She was having a very hard time breathing so she was immediately hooked up to a ventilator. Once the team had stabilized her she was moved to the Neonatal Intensive Care Unit. Unfortunately for Heidi she didn't get to see Jersey for more than 5 seconds before she was rushed away with the doctors. A terrible thing for a new mother.
Upon her arrival in the NICU a series of tests were run. Heidi and I weren't allowed to be with her so we had to sit and wait in our hospital room until our cardiologist came in to tell us how everything was going. He explained that her pulmonary arteries are dilated to the point that it is blocking her airway (this is why she couldn't breathe when she was born). He also said that her right ventricle wasn't working properly. Because of this she will be monitored for the next 7 to 10 days. After that they will have a more definite answer on when they will do surgery. Either way she will have surgery, it’s just a matter of when. Ideally we would like to wait until she is a little bigger and stronger, but there is a possibility that the surgery needs to be done sooner rather than later.
At this point Jersey is stable and seems to be responding well to her treatment and meds. She is adorable and has Tucker's mouth and Tatum's nose. She's perfect!!! Heidi has been a trooper throughout this whole ordeal. She didn't get to see her newborn daughter for almost 4 hours and handled it very well. We are grateful for everyone's support and hope to keep everyone updated.
Below are some pictures of our day...
Monday, November 24, 2008
IF YOU KNOW SOMEONE WHO IS PLANNING ON COMING, AND DOESN'T BLOG, PLEASE LET THEM KNOW.
Thursday, November 20, 2008
Tuesday, November 18, 2008
Monday, November 17, 2008
Sunday, November 16, 2008
Thursday, November 13, 2008
Friday, November 7, 2008
Enjoying their well earned pizza.
Saturday, November 1, 2008
Chris and Matt just finishing swimming are quickly throwing on shirts and shoes and are off to bike 10.2 miles. The blondies and I ran over to watch Chris's exit and Tucker was SO sad his dad couldn't give him a love before he biked.
The best thing to do while you wait is eat, so the rugrats enjoyed donuts and juice while keeping their eyes peeled for their tired dads.