After her apnea the previous week, doctors want to keep Adelyn for observation the full seven days. Her next possible discharge date is set for Thursday, May 30th.
May 29
Adelyn's eating by mouth has improved enough to do a swallow study. The study shows she does have dysphagia, slowed esophageal motility, and is still at risk for aspiration, but that she has enough control and stamina to advance in her feeding goals. Though Adelyn continues to get most of her meals through her ng tube, she has fewer restrictions on bottle feeding attempts and Laura is cleared to re-introduce Adelyn to breastfeeding! Yay!
A full week passes without Adelyn having an apnea event! Doctors assure us she is much less likely to have a relapse now that she has outgrown her premature status.
However, before she is free to leave, the clinic that will oversee Adelyn as an outpatient (SICC) recommends several changes in her hospital care to mimic her future life at home. Once they and the step down team evaluate how well she tolerates those adjustments over a 48 hour period, a plan for her discharge will be created. Bumpers and positioners are (mostly) removed from her crib, the head of her mattress is flattened between feeds, and James and Laura are encouraged to assume responsibility for her care whenever they are at the hospital. Practice makes perfect.
Adelyn is unplugged from her monitors, dressed in her first outfit, and goes for her first walk with James and Laura through the hospital halls! (Rain kept us indoors.)
May 31
The SICC and step down team agrees Adelyn can be discharged on Monday!
June 1
Meanwhile, Owen spikes a fever.
June 2
Adelyn turns five weeks old!
James and Laura learn Adelyn had a desat (significant drop in oxygen levels) late on Saturday night. The weekend staff questions the wisdom of Monday's discharge plan.
June 3
After much deliberation over the course of the morning, all parties involved agree that Adelyn's desat event over the weekend is within her range of "normal" and that she can be released that evening. Laura, James, Owen, and all the family in town scramble to help make final and last minute arrangements to bring her home the same night!
Adelyn's remaing leads and monitors come off, all her medical paraphernalia and Laura's frozen milk is packed, and she's bathed, dressed for home, and sent off. The nurses create a tunnel and blow bubbles to celebrate!
ADELYN GOES HOME!!!!
June 4
It's the Rosenberg's first full day together as a family! It comes as no surprise that the transition is blissful and super stressful at the same time. Just managing Adelyn's feedings is a full time job for two. James, Laura, and Owen are all sick with a cold, and everyone, including baby girl, is exhausted. Now away from the hospital, the doctor visits begin. (Not only for Adelyn, but for Owen too, who begins treatment for bronchitis and a secondary infection.) Nevertheless, the sweetness of the long-awaited homecoming is not lost on anyone!
June 6
Adelyn is eating, pooping and peeing everywhere, spitting up, getting her meds on time, going to all the doctor offices, enjoying lots of snuggles, and doing all the baby things. All the things except sleeping. (Hospital stays do nothing for babies getting on a schedule.) James and Laura feel legitimately proud that they've kept her alive so far (that's funny, but real).
Owen is less sure that bringing his sister home was a good idea, but continues to love the role of big brother and helper. He has also developed a wheeze and begins a nebulizer breathing treatment regime at home, poor dude.
June 7
Adelyn takes three back-to-back naps between her night-time feedings! Still, James and Laura are exhausted to the point of desperation. After a quiet morning of playing together at home, James and Laura try to leave Owen in the care of grands to take Adelyn to another doctor's appointment. Owen has a massive meltdown that perfectly expresses the feelings of the whole family: THIS IS HARD. As a family we acknowledged to each other that we love one another, that we're in survival mode, that we need the grace of JESUS, and that we'll be okay because we're together.
One day at a time.
Now
Please pray:
1. Praise God that Adelyn's home!
2. Praise God that she is making progress in her eating by mouth goals! That she would continue to increase the amount of breastmilk she is able to take by bottle and breast.
3. That Adelyn's brain would continue to recover and grow normally. That her vocal cord will heal.
3. That Owen, James & Laura would get over their colds quickly, and that Adelyn would remain healthy.
4. For stamina, strength, hope, and rest for James & Laura. For patience and understanding beyond his years for Owen.
5. For God's provision in all the Rosenbergs' needs.
Help!
We are so blessed by the ways many of you have moved toward us during such a difficult time for our family. With Adelyn's homecoming, we often feel overwhelmed. Your prayers, meals, encouragement and gifts bless us so much. Thank you!
As before, if you are local to Durham, NC, you might like to participate in the MEAL TRAIN that Laura's sister has set up for our family. Not having to worry about cooking meals has eased the stress in our daily schedule. We also have a GIFT REGISTRY for Adelyn. And finally, if you would like to contribute toward Adelyn's medical expenses tax-free, please get in touch and we'll provide you with the necessary information to do that.
