We woke up this morning to a bagel breakfast. The Yawkey Family Inn where we’ve been staying at the past 3 months ordered bagels to give us a sending off breakfast and it was quite a nice way to start off the day. They also surprised Ella with munchkins (Dunkin Donuts doughnut holes). Neither Matt nor I knew what they were but soon found out. The quote from Christine, the office manager, was, “I want to make sure she gets some sugar since you always feed her organic stuff and vegetables.” (NOT) She wasn’t the only one on that train of thought. The Center for Families at the hospital surprised her with a cake. The cake was decorated with a snowman, her most recent kick. She loves snowmen and points them out everywhere she goes. She goes crazy over the Frosty the Snowman song.
They are transitioning Ari’s drugs and once that’s done they’ll start weaning her off the drugs. We’re guesstimating that will take more than a month at the least. We’re not getting any dates from the docs or the nurses. Ari also needs to have three dilatations (where they put a balloon tube in her esophagus and expand it due to it being narrowed at the point where it was repaired) which are standard after an anastomosis. Weaning her off the drugs and working on feeding her orally are going to take the most time. She’ll be sent home with a G tube in her stomach that we’ll have to feed her through until she can eat on her own. This could be a relatively short period or a few years we really don’t know.
The sweetest thing today was seeing Matt hold Ari. He got to hold her for several hours. Nina was going to let Matt have all the holding time but just couldn’t do it so got to hold her for half an hour as well. It’s been over two months that we got to hold her, which has been really tough on us. You stare at your loved one and feel like you’re not doing enough to help and powerless in the grand scheme of things. It might be two more months before Matt and Ella get to see her again and it may be two more months before Nina gets to see Ella and Matt. Ella has always had both of us around so it’s heartbreaking to think we’ll be separated for a bit.
Here’s to a safe flight and another chapter in this long journey that we’ve been on.
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| Ella's going away cake |
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| I get to hold my baby!!! |
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| Family together !!! |
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| Mamma and her girls |
3 comments:
What a wonderful and uplifting blog and pics guys! We love you all so much and can't wait for the day that little Ari and Nina come home! Safe travels Matt and Ella!
Sorry guys, anonymous is me! Got in too big of a hurry.
This week has been amazing for all of you. So many things happening and so many changes. Just keep taking deep breaths. Ari looks wonderful. The months will just fly by for you all. The pictures are fantastic. The words in print help us to understand some of this. Thank you so much for sharing with all of us. We appreciate it so much. Ella does love her snowmen. The cake looks so cute. I can just see her wiggling around when the song Frosty comes on. Safe travels to Ella and Matt. Nina, I know you will miss them, but they will miss you even more. Hang in there all of you.
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