Let's rewind a little and I'll explain how it all went down. About two weeks ago, I still wasn't feeling comfortable with Sawyer's bottle feedings. She would develop rattles that you could hear and feel in the back of her chest and would have hard, deep swallows that just sounded like she was overwhelmed. These sounds made me so nervous and I'm sure I sounded like a crazy person because I would bring up the topic to anyone that would listen. A swallow study had been in the works 2 weeks in a row, but each time had been canceled because she seemed to continue to make improvements with her coordination. Finally, there was talk of us just taking Sawyer home with a feeding tube and letting her continue to grow and mature and work on feedings from home. Home health was ordered for us and I had surrendered myself to this fate, however, I asked again for a swallow study. I wouldn't feel comfortable taking Sawyer home making these noises during her feeds without knowing exactly what was going on with her mechanism of swallow. The speech therapist had been out of town for a week, but when she returned, she evaluated Sawyer and agreed that a swallow study needed to happen and we should hold off on so many PO attempts. We held off for the entire weekend and Sawyer's swallow study and upper GI (to evaluate reflux) was scheduled for the following Monday at 3pm.
Results: trace aspiration with thin liquids and severe reflux. Not to say I was happy with this, but I knew something wasn't right about the way she was feeding. But there is good news, with thickened liquid, she could eat safely. So here's what we did for feeding safety and max reflux management: completely took breast milk out of her concoction and thickened the Enfamil AR with rice cereal to make it more of a honey consistency and upped her dose of prilosec.
On Tuesday, speech was able to feed her 37mL easily and we made her feeding order attempt to bottle when awake and allow her to take up to 30mL. Wednesday morning, speech was able to feed her the entire volume (50mL) with no rattles and no hard swallows! Ryan and I each fed her that day and both could not believe this was our baby. Not only would she take the whole volume, but she took it in 10 minutes with hardly any pacing. You could actually feed her like a regular baby! To say I was amazed is an understatement. I could never have imagined this kind of turnaround.
Thursday morning, her feeding tube came out. She was taking her full volume by bottle and not only was she eating well, but her color was better. She was pink and looked rested! Her occupational therapist even commented that she was relaxing her legs more and hips weren't so tight (which by the way, she had a hip ultrasound and they are normal.)
Ryan and I were cautiously optimistic that we might be able to take Sawyer home by Saturday. We were just hoping and praying that she would continue to eat well. I definitely never imagined Dr M would walk in that Thursday afternoon and say "well, when do you want to take her home?" I laughed and said "as soon as you'll let me," and she said, "today?" Picture: jaw dropping to floor. I was shocked. Then immediately remembered Ryan was working that day and definitely wouldn't want to miss her homecoming. I told her this and said I guess we would wait to bring her home on Friday. Then I came to my senses, said "what was I thinking?!? We'll take her today!!" Then called Ryan and told him he needed to leave work because SAWYER COULD COME HOME!
Within 5 hours, she had passed her car seat study (1 1/2 hours in the car seat while on the monitor to make sure she was safe), we had packed up all her clothes and signs, completed discharge teaching, and were walking out the door. Even as we were driving away, we couldn't believe what was happening. Not going to lie, there was a slight moment of panic when I realized we were taking home a baby that had just started eating within the last 2 days, but I snapped out of that quickly as we pulled into the driveway.
First thing I did...turned on the Christmas tree and let her see the lights. And I'm happy to report that she loves the Christmas tree. Her first night at home was a little nerve-racking---how was I supposed to know if she was breathing if I slept?! I missed her monitors. We made it through the night though relatively smoothly and with some sleep. Now 4 nights later, we have a routine and are getting into a groove. She is such a good baby and life is all the more sweeter with her home.
We went to her first pediatrician appointment yesterday and she gained weight! Her discharge weight was 5 lbs 7 oz on Thursday and now she was 5 lbs 12.5 oz!! This is a big deal and so exciting!
A home health speech and occupational therapist will be coming to evaluate her on Monday, scheduled a pediatric ophthalmologist appointment for February, as well as an appointment with a pediatric orthopedic specialist. I'm feeling semi-organized.
Again and again, THANK YOU for all your prayers. And thank you to the amazing NICU staff that has cared for and loved my daughter for the past 7 weeks. We love and appreciate you all.
love,
Team Sawyer
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