Support the Rheaume Family
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As you all may know, the Rheaume family welcomed Maevis Joy on November 5th. After a few short days at home, Maeve was brought to UVMMC for some extra love. While with Maeve, Miss Cassidy was bit by a dog and needed to have surgery. Kaitlin and Steve continue to be strong for their family but as you can imagine, the medical bills are piling up. This sweet family could really use your help. Please keep the Reaume family in your thoughts!
Update: LONG - we’re still hanging out on the pediatric floor for now (also sharing this picture from when we were home and holding on to knowing we will have these moments all together again). It’s easier to update this way - I’m so sorry if I haven’t responded to everyone’s sweet messages but please please know that every single one of those messages brings some peace to our hearts. This message is a copy paste/straight forward from a conversation easy way to update.
Yesterday 11/15/18: So they called us in the middle of the procedure saying they found The reason for aspiration that Maeve has a laryngeal cleft and they saw a narrowing in one airway so they needed further consent to look down that airway. After we were able to sit down with the pediatric pulmonologist and the ent... They said she also has a bronchiomalacia . She will need surgery to repair the cleft but they can’t do that until she grows bigger around 3-4 months. Until then we will have a pump and the supplies to NG tube feed her at home. The feeding plan is sad for me as I love nursing my babies but I know it is the right thing. It’s just q 2 hr NG tube feedings and pumping q 2 which seems like so much more work, and I know we will do whatever is best for her, just overwhelmed and sad bc she really loved nursing as well despite the distress it caused. I want to do whatever Is safe and best for her. I’m soo glad there is a solution, just overwhelmed by it all. Cass plastics consult for her second surgery is Monday and I think we will be up here biweekly or weekly with Maeve for a while. We are hoping for discharge tomorrow afternoon (Friday) but the dr just came in and said it may not be until next week depending on a few things they try tomorrow that they don’t want to try today bc of her big day. So ready to be home with all of my babies.Took her hours to come out of anesthesia and off oxygen so we had to wait in pacu for a while
11/16/18: MJ had a rough eve/night. She cried the most inconsolable pain cry until 0030 when they finally decided to do something. She was drawing her legs up big time and making the saddest faces. I tried EVERYTHING and even reminded myself to stay calm for her. We walked halls, bounced, tried upright, swing, massage, belly rub, sang, swayed, danced, swaddled, 3 tube feedings through out that time etc. everything over and over again. I had called them in many times, it was breaking my heart for her. Her voice/cry became raspy from the 6 hrs of almost non stop. They didn’t want to start reflux meds in the night but rather wait until today to see but she was clearly refluxing (and we’ve know that from the swallow study Monday, independent of the cleft, she refluxes all the way up to through her nares)... I think her throat was sore from the scope and then we could hear her refluxing (cough, gag, sneezing etc) and it was probably making it burn even more. They decided to give her Tylenol around 0030 ish and about 30’minutes into it she was still fussy but consolable and then around the 45 -60 min mark into the tylenol it was like a night and day baby.
The attending dr that has been seeing her all along came in to round this morning. She would like to try reflux meds and see if it makes a difference. She wants peds GI to come in and see her and plans to space her feedings for now. She wants some more labs done today but is rounding with the whole team and seeing if they want to add any so she only gets poked once. * GI dr said with that cleft it’s inevitable that baby would need reflux meds
*Austin, Cass and Daddy really want Mama and MJ home. They’re begging for a home movie day together.
Thank you all for your love and support ♨️
Update: LONG - we’re still hanging out on the pediatric floor for now (also sharing this picture from when we were home and holding on to knowing we will have these moments all together again). It’s easier to update this way - I’m so sorry if I haven’t responded to everyone’s sweet messages but please please know that every single one of those messages brings some peace to our hearts. This message is a copy paste/straight forward from a conversation easy way to update.
Yesterday 11/15/18: So they called us in the middle of the procedure saying they found The reason for aspiration that Maeve has a laryngeal cleft and they saw a narrowing in one airway so they needed further consent to look down that airway. After we were able to sit down with the pediatric pulmonologist and the ent... They said she also has a bronchiomalacia . She will need surgery to repair the cleft but they can’t do that until she grows bigger around 3-4 months. Until then we will have a pump and the supplies to NG tube feed her at home. The feeding plan is sad for me as I love nursing my babies but I know it is the right thing. It’s just q 2 hr NG tube feedings and pumping q 2 which seems like so much more work, and I know we will do whatever is best for her, just overwhelmed and sad bc she really loved nursing as well despite the distress it caused. I want to do whatever Is safe and best for her. I’m soo glad there is a solution, just overwhelmed by it all. Cass plastics consult for her second surgery is Monday and I think we will be up here biweekly or weekly with Maeve for a while. We are hoping for discharge tomorrow afternoon (Friday) but the dr just came in and said it may not be until next week depending on a few things they try tomorrow that they don’t want to try today bc of her big day. So ready to be home with all of my babies.Took her hours to come out of anesthesia and off oxygen so we had to wait in pacu for a while
11/16/18: MJ had a rough eve/night. She cried the most inconsolable pain cry until 0030 when they finally decided to do something. She was drawing her legs up big time and making the saddest faces. I tried EVERYTHING and even reminded myself to stay calm for her. We walked halls, bounced, tried upright, swing, massage, belly rub, sang, swayed, danced, swaddled, 3 tube feedings through out that time etc. everything over and over again. I had called them in many times, it was breaking my heart for her. Her voice/cry became raspy from the 6 hrs of almost non stop. They didn’t want to start reflux meds in the night but rather wait until today to see but she was clearly refluxing (and we’ve know that from the swallow study Monday, independent of the cleft, she refluxes all the way up to through her nares)... I think her throat was sore from the scope and then we could hear her refluxing (cough, gag, sneezing etc) and it was probably making it burn even more. They decided to give her Tylenol around 0030 ish and about 30’minutes into it she was still fussy but consolable and then around the 45 -60 min mark into the tylenol it was like a night and day baby.
The attending dr that has been seeing her all along came in to round this morning. She would like to try reflux meds and see if it makes a difference. She wants peds GI to come in and see her and plans to space her feedings for now. She wants some more labs done today but is rounding with the whole team and seeing if they want to add any so she only gets poked once. * GI dr said with that cleft it’s inevitable that baby would need reflux meds
*Austin, Cass and Daddy really want Mama and MJ home. They’re begging for a home movie day together.
Thank you all for your love and support ♨️
Organizer and beneficiary
Shayna Christine
Organizer
Middlebury, VT
Kaitlin Rheaume
Beneficiary