Riverlyn's road to home...🏡

Good morning!

It's been a busy week since the last update. This is the shortlist we were working off of for our road to home - there has been some progress and some amendments: 

• To be taking 50% of her daily intake by mouth (yesterday was 25%) ⏳

• To complete a swallow study (which takes bottle proficiency - she did take 10ml by bottle today which is double what she's been able to do recently - this would happen as soon as early next week if she continues to make bottle progress) ⏳

• See consistent weight gain (we are still sitting just below birth weight but she has been making teeny tiny gains over the past few days) ⏳

• Be off all machinery (IV, feeding pump, etc) ✅

Here is the updated list: 

• Improve oral eating skills (efficiency and endurance)  ✅

• Complete a swallow study  ✅

• Educate Matthew and "room in"  ✅

• Ween off medications ⏳

• Stabilize electrolytes ⏳

• Gain weight consistently with new feeding plan ⏳

• Pass car seat test ⏳

• Assess most recent heart echo (the numbers are the same for her mitral stenosis) ⏳

Riverlyn was able to participate in the swallow study which was a huge answer to prayer. That said, it revealed that her dysphagia was resulting in silent aspiration on thin liquids from the bottle (aka breast milk). So, to feed her safely, she's only allowed thickened liquids from the bottle (formula mixed with thickener - oatmeal cereal) on her right side. She will be allowed to continue to breastfeed (thank God). At this point it looks like we are candidates for her to come home with her feeding tube in. 

With this new information, the team wants to see her continue to gain weight. We are thrilled to share that she finally surpassed her birth weight! 

We also got Matthew trained on all Riverlyn's medical care needs this past weekend. Thank you so much to the family and friends who helped make this possible. Also, the team gave us another special pass for Nathan and we were able to celebrate Aidan's 22nd birthday as a family in the hospital. 

They'll repeat a swallow study in 6-10 weeks as her immobile vocal chord should reinvigorate over time and will hopefully be restored as soon as possible (this could take anywhere from a couple months to a year). In the meantime, we are still pursuing healing, milestones, and sleep 😉 It is possible that things could move quickly from this point on (regarding discharge) and that's our prayer.