We got to CHOP on Monday afternoon and the ambulance that Micah traveled in had beaten us there so we were very anxious to get up to her new room to see her. Micah is a part of the East NICU blue team. That means she will be taken care of by a certain group of nurses, fellows, attendings, and residents. If this is your first time reading about these different doctors join the club, I was so confused when we first arrived. Attendings are the Big guns, fellows are next in line and they consult with us about any genetic testing-MRIs-Xrays- etc, then the residents work with the fellows to get these tests accomplished and the nurses(which we adore) are obviously the ones tending to Micah every day. Now that we are 2 weeks in to our stay at CHOP, it's even worse because our attendings and residents change every two weeks. This means we have to be on our toes in making sure that we advocate for Micah because we, along with some of the regular nurses, are the only ones seeing her progress daily.
My first time holding her while she was awake and happy!
Within the hour that we had arrived at CHOP we had already met EVERYONE I listed above. It was amazing to see that many people at Micah's bedside. I felt like it was a team that was really going to HELP our baby girl. It was the best feeling. We also met the neurologist and his team(3 or 4 more doctors). Everyone evaluated her tone and gave us a report right then and there. It was the most information that we had received ever since Micah was born. Within the first three days Micah's IV was removed, which was her only source of nutrition since she was born, her feeding tube was inserted and she was receiving continuous feeds of my breast milk (YAY- pumping has a purpose wahoooo), she had an ultrasound of her heart (which came back NORMAL- heck YEA), and physical therapy had come to evaluate her and they gave us some exercises that we could to help improve her tone.
The nurses told me I could bring clothes and receiving blankets for Micah the first night we were there and I was so excited. I had just assumed they would keep her in NICU clothing and use their blankets. My first thought was, "oh shit I don't have any girl clothes or girly blankets"
but thanks to great family and friends, who bought Micah clothes after she was born, I was able to bring her new clothes that next day.
Here is a pic of her very first outfit purchased by her Mimi (my mom)
and the bow is from my sister Holly and her two daughters. We had to rock the asymmetrical look because she still had her IV on her hand at that point.
Daddy's little girl!
I know Micah will be SO IN LOVE with Bill and I cannot wait to have little conversations with her about how much we BOTH love him to death. She will hear me say how much I love him every day of her life. Don't worry I will be doing an entire blog about how amazing Bill has been through this whole process, it will make all of your husbands/boyfriends look real bad =) j/k but he is really the most amazing person on the planet, next to Micah....lol
Some more pics of Micah throughout her first week at CHOP! All of the nurses and I are obsessed with these new onesie dresses. It's an all in one combination and they are A-dor-ABLE!!!!
This is one of my favs....
Yes, I know this bow is bigger than her head but it's just so awesome isn't it?
By the end of Micah's first week at CHOP her tone was slowly improving. She was moving her arms and legs a lot more. She is having trouble handling her secretions (saliva) because she can't quite swallow yet and if she is swallowing it isn't a strong enough swallow to get all of her saliva down. She had two genetic tests that went out the first night she was there. One was for Prader Willi and the other is a Chromosome test that we are still waiting for results on. The Prader Willi test came back negative on Tuesday 7-24-12 which was a huge relief. Google it and you will see why it was a huge relief for us.
Micah also had an upper GI test done on Friday 7-20-12. They were worried that she was refluxing, which is VERY dangerous for her because she doesn't have a gag reflex so her reflux could end up in her lungs leading to pneumonia. They did this test to see if she was refluxing and they also were looking to see if her intestines were malrotated. Thank god everything came back normal with the upper GI test. Next step is an MRI of her brain during week 2. I'll blog about that next.
Here is a pic of Micah at 1 week... HAPPY BIRTHDAY MICAH GIRL!!!!
We Heart Micah!