Greg and I got some sleep last night after a long day yesterday. Greg had to stay at the Ronald McDonald House to keep our room which we just got and I am still at the hospital. I got to take a shower today! I was super excited but scared to see my incision from my surgery. There are just stitches and not staples which I thought was originally there. I have been sore all day today and my throat is super sore and my voice is hoarse from being intubated. Still moving slowly around and I am not sure how I am going to move around without my best friend: my wheelchair. I will discharged sometime tomorrow but have not been given a time.
We were with Aiden three times today and the last visit was my most memorable one because I was able to hold his hand and he held my hand back for a little bit. I did another cradle of his head and it felt so good to feel so close to him in some way or another. Aiden had a pretty okay day. We learned today that he definitely does not like to move positions. He prefers to lay on his back and so far he is most comfortable in this position. We put up some special things in his area of the NICU today: blankets, rosary, elephant lovie, etc. It is now "his" space. The NICU and ECMO staff are amazing at U of M. They have made Greg and I feel so much better after each visit. They are so kind and caring and really care about Aiden. Aiden is currently receiving Morphine, Dopamine, Ativan, and Hydrocortisone. They did double his Morphine today because he doesn't like to be disturbed too much as he is sensitive to touch. Most CDH babies do not like a lot of stimulation which is why Greg and I do "cradle" holds only. The NICU team stated that "Aiden is in charge" and they follow his cues every day. They do not know when they will do the repair and will wait until he is more stable and hopefully he is off of ECMO before the repair. Aiden has surgery tomorrow in the morning and we will update you after we know the outcome. Surgery is around 8am and should last an hour or two.
My mom is coming back to Ann Arbor to stay with me while Greg goes home to finish out his last week of classes. Greg's finals are on Thursday. He will officially graduate with his Bachelors Degree. YEAH Greg:) Cole is doing well hanging with his Mimi, Papa, Uncle Luke and Aunt Lindsay. He received his first letter from me today and it was an envelope full of Toy Story markers. He made Greg and I pictures today. A friend of mine, Carrie Baker gave me the idea of making letters for Cole each day and put into a basket that he could pick out of each day. Inside each of them were assortment of various items that he would appreciate like markers, crayons, stickers, candy. I also put in a quick note from me since I will not get to be with him every day. I absolutely loved the idea and made about 60 letters for him to open. He opened his first one today with my mom and he immediately decided I needed a picture and so did his dad with his new Toy Story markers. I cannot wait to see my picture tomorrow.
I will update you all tomorrow night once we know how surgery went. Thanks for all your support and prayers:)
1 comment:
Wishing you all the best! I, too have a CDH little guy-right sided. We live in Cleveland, but consulted at U of M, WONDERFUL place, we ultimately ended up in Cincinnati, though. My son with a 20% chance of survival is a thriving 27 1/2 month old! :) Miracles happen, stay positive!
Sorry about the post-labor issues. I had an emergency c-section with Jaime and know how you feel with the pain/dizziness/nausea...all the while trying to stay strong for your little one. Hang in there and get your rest, too!
(Oh a little Ronald McDonald House thing, we were told the same thing, then they clarified that as long as we "swiped" in at least once in 24hrs we could keep our room. Maybe this will help you on days that neither of you really want to leave the hospital for the whole night.) Again, good luck! We'll be sending positive thoughts your way!
Sheryl
(Jaime's mom, 34wk, R-CDH, Hemophiliac)
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