Folks frequently ask if things have gotten any easier and if we've found our rhythm. Those are hard questions to answer because there are just no simple replies. It has been hard and sweet and hard and terrifying and wonderful and harder still.
Yes, we have a routine now. Our schedule is just crazy exhausting. Adelyn eats every three hours, all day and all night long. James feeds her by bottle four times a day, and I breastfeed her four times a day. Then the remainder of her milk comes to her through her feeding tube (through her nose), which takes up to an hour to run. Because we are determined to provide her with my breastmilk, and she has been getting only my "hind milk" in an effort to boost her caloric intake, my role in her feeding looks something like this:
I pump off my fore milk, set some of my previously stored hind milk to warm, change Adelyn's diaper, weigh her on the scale, nurse her, weigh her on the scale again, burp or vent (pull the air out of her ng tube with a syringe), try to nurse her on my other side, weigh her on the scale a third time, calculate how much milk she drank at the breast, add the remainder of my warmed milk to her pump bag, prime the air out of her pump's tubing, give her her meds (most of which we administer through a syringe into her ng tube), hook up her pump to her ng tube, pump off my remaining milk until I'm empty, store the fresh milk away, allow her pump to run, and then finally disconnect Adelyn from her pump after the feed is complete. The whole process takes anywhere from one to one-and-a-half hours, and that's even with James' help washing all the bottles, caps, syringes, flanges, etc. And only that fast if we don't have any interruptions that come in the forms of spit ups or poops or a sweet toddler needing attention.
That leaves us with two hours at most to do everything else--sleep, eat, bathe, play with Owen, grocery shop, meal prep, run laundry, get to doctor's appointments, etc.--before the whole process begins again. 24/7. There has been no break in this routine, because Adelyn's daily/nightly care rests entirely on James and my shoulders.
Soon after leaving the hospital Adelyn caught the family cold. For more than a week we were ALL sick, and there was the terrifying possibility Adelyn would be hospitalized again. (I, in fact, ended up back in the ER due to concern that I had developed pneumonia. It was terrible--I was unprepared for how returning to all the sights, sounds, and smells of that part of the hospital would affect me. I was a teary mess. The doctors ended up being far more concerned about the possibility of postpartum depression than over my infection. Thank goodness my sister was there to vouch for my sanity.) Adelyn's pediatrician (who is wonderful) followed her closely with us, which required almost daily returns to the doctor's office (in addition to her other appointments and therapies). Overnight, monitoring her for respiratory distress nearly destroyed me. How can I describe the horror of watching my fragile-preemie-just-discharged-after-two-major-surgeries-seven-week-old-infant cough pathetically, wheeze, chortle, and turn all the colors? In the dark hours of the night, the uncertainty of whether she was in enough respiratory distress to legitimize my fears kept me hovering over her in a fog. And when exhaustion finally won and I fell asleep, I'd awake in a panicked cold sweat, overwhelmed with miserable mom guilt.
Now in most ways we are out of danger, praise the Lord. All four of us are finally over that awful cold. Yet the sleep deprivation, the weight of parental responsibility, the absence of any real reprieve, and the stress from a number of other sources in our lives right now keeps us in a state of mild desperation.
It's hard to admit, because we've had so much help! The grands carried us through Adelyn's hospitalization, my sister and her family have continued to be the most amazing support, members of the Summit Church here have been so kind, and so many of you have sent gifts, meals, and money that have aided us in such significant ways! And yet, it's still hard. Our new normal is just hard.
We are treasuring the sweet moments--like an occasional family walk to Loco Pops for a treat--and taking it a day at a time. Little by little, Adelyn is eating more by mouth. She is showing good developmental signs, like sucking on her fingers, making eye contact, and glimpses of a smile. Owen is successfully potty training and feeds his babydoll with an ng tube. James and I are blowing kisses as we pass each other at "shift change," lol.
(Pictured Above: How Adelyn really feels about me trying to get a cute picture of her these days. Ha!)
Now
Please continue to pray for Adelyn Gray:
1. Praise God that all the Rosenbergs are over "the cold" and that Adelyn was able to come through it okay.
2. Praise God that Adelyn is continuing to progress in her eating by mouth goals. Our hope is that she will take all her calories by mouth within six months (or much, much sooner)!
3. Adelyn was set back a bit by her cold, however, and her growth rates have fallen. Please pray for her to put on weight and keep growing.
4. That Adelyn's brain would continue to recover and grow normally. That her vocal cord will heal.
5. That Adelyn will qualify for the programs, therapies, equipment, and nursing she needs to thrive at home, and that these services will be covered by insurance!
6. For stamina, strength, hope, and rest for James & Laura. For patience and understanding beyond his years for Owen.
7. For God's provision in all the Rosenbergs' needs.
Help!
If you are still wanting to help, we need it as much now as we have in the past. If you feel so led, here are a few ideas:
1. If you are local to Durham, NC (and even if you're not, you can pick up a meal by sending delivery), you might like to participate in the MEAL TRAIN that Laura's sister has organized for our family. Not needing to worry about cooking dinner once in a while has eased the stress in our daily schedule.
2. Some of Adelyn's doctor appointments take place at Duke University Hospital or at Duke clinics nearby, and parking in one of the two garages is expensive. Discounted parking tickets are available and can be purchased at the hospital gift shop or you can contact DUKE PARKING SERVICES at 919-684-7275.
3. Help with everyday necessities like groceries, diapers, and gas is a blessing too. Gift cards are most welcome! Please get in touch with us if you need a mailing address.
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