Today was an OK day as days go. I made my way to Newton-Welsley after a good nights sleep to see Carrie and Mandy. Once here Carrie was able to feed Mandi breast milk (only with a bottle though, we fought them on that but they wouldn’t budge). Carrie was able to hold her for a good long time as well. What I find interesting and evolutionarily significant is how much better her vitals are while there is skin to skin contact. Babies are just meant to be with their mommies.
I then headed over to Mass General hoping Lila would have her chest tube removed. What did happen is that it was turned off but left in for safety. There were many philosophical disagreements amongst a few different doctors and nurses on this one. The problem with both the girls is that they have very high respiratory rates (which decreases when they are with mom). The disagreement comes with the doctors/nurses who only rely on data from the machines and the ones who take a more observational/experience approach. Basically they averaged and said lets wait a set amount of time, see if anything happens with her vitals, then do something. That time came and went, an x-ray was done (which showed all is well) and the hope is that they will pull the tube tonight (its not being used or needed right now). Its not major, but sort of a mental milestone to have it removed. She was also able to take breast milk today through a bottle so that was very good. I spent about 7 hours at MGH just being supportive, talking with docs and nurses, and mulling through the silence of her room (which is twice the size of Carries, that still amazes me). Our awesome nurse (the one who admitted Lila) Keri is on tonight so I know she is in good hands. I would say there was a marked improvement in her health today, she was even up and alert a few times which was very nice for daddy to see.
I headed back to NW at 9:15pm, showered, ate some hospital mac and cheese, and then received the good news that Mandi has been moved to the other side of the NICU where the more stable babies are, her Oxygen has been lowered and she no longer requires the heating lamp. Things are looking good on that front.
Carrie is discharged tomorrow, which is sort of sad, because the babies won’t be coming with us and are still at different hospitals. The hope is that Carrie will be able to board here as a mom and not a patient so we won’t have to keep making the 40 - 60 minute drive from home each day (depending on which hospital we go to). She is planning on going home after her discharge to spend some time with the boys who miss her very much, then she will come back to NW to be with Mandi. If all goes well at MGH Lila may be able to come over the NW to be with her sister soon and that would be great. Since they have not been together since they were born 3 days ago. So I am off to sleep on my crappy cot. Enjoy the pictures below and rest assured the girls are improving and hopefully will be able to come home soon.
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You guys are amazing. We are praying for you. We wish you all love and strength you need. Thanks for keeping us posted. And the pictures are awesome. Hope your family is united soon. Love, Heather, Chris and Ally
They are beautiful. I didn’t think they looked like the boys in the previous pictures but in these pictures with their eyes open they are mini Hamptons!!!
Stay strong and they will be home with you before you know it!
Tracey, Ben, Logan, Mason and Braden
Jason & Carrie,
You are both such amazing people! It’s wonderful to see these pictures and know that things look good for all of you. Best wishes. Hope to see you all soon.
Just wanted to let you know I am thinking of you and your family and am glad to hear that things are looking up….
Hey Jay,
First, congratulations on the arrival of Lila and Mandi! (Beautiful names!!!) It sounds like you guys are doing amazingly under the circumstances. I hope you will all be home soon, and can enjoy every moment of babies and your wonderful family. We’ll be thinking of you.
Take care,
Ana