Sweet Heart

HEART CATHETERIZATION & ANGIOPLASTY
Earlier this summer it was discovered that Adelyn's aorta had re-narrowed at the place where she'd had her surgery (when she was just five days old). On August 20th, she had a catheterization procedure. The surgeon inserted, inflated, and then withdrew two teeny tiny balloons to stretch that portion of her aorta and break up the scar tissue that had built up. We were in the hospital a day and a half, and then Adelyn was released home.

The procedure was successful, but it was also hard on our baby girl. The anesthesia took a toll on her already sensitive gut, and though her bruising and incision healed quickly, it took her a full week before she could keep a whole meal down. Nevertheless, we are so grateful blood is flowing through her heart more easily now, and it is obvious to everyone that she's just getting stronger and stronger.

NURSE, COME HOME WITH US
One happy outcome of another hospital stay is that the awesome nurse who discharged Adelyn after her procedure is now one of the nurses who visits us at home! She helps care for Adelyn a few hours each week. We are lucky to have someone of her skill level who knows Adelyn as an inpatient--best babysitter ever!

SEE YA' LATER, CARDIOLOGY
Today Adelyn had another marathon heart appointment at Duke. After an echocardiogram, EKG, and checking all her vitals, the cardiologist told us her heart function is excellent. She said,

"This girl is beautiful and doing great. As cute as she is, I don't want to see her for another six months. Get her outa' here, mom. And after that, my hope is we'll only need to check up on her every year or so. I think this sweet heart has pulled through."

THE HARD WORK
Despite all this good news, Adelyn has constant challenges. She will soon need another surgery to place a G tube if she can't show more progress in her eating by mouth goals. And though she is slowly getting stronger, some delays are becoming obvious. Thank you to all who pray for Adelyn Gray--how we treasure the thought that so many of you are beseeching the Father for her health and growth with us!

Prayer Requests
Please continue to pray for Adelyn Gray:
1. Praise God that He has used the physicians at Duke to heal our baby girl's heart!
2. Please pray that Adelyn will make great strides in her eating by mouth goals. We desperately want to see her taking all of her calories by mouth before she is six months old so she can avoid another surgery and the placement of a G tube.
3. Please pray that Adelyn's brain will continue to recover and grow normally. Ask that her left vocal cord will also heal.
4. Pray for Adelyn's strength and development. Please specifically pray she will be able to support the weight of her head soon!
5. Pray that Adelyn will continue to qualify for the programs, therapies, equipment, and nursing she needs to thrive at home, and that these services will be covered by insurance! Pray for the excellent nurses and therapists who assist in her care.
5. Big brother, Owen, started preschool! May that time away from home be a blessing on his heart, mind, and body. (Praise God he doesn't have to be dragged to all the doctors' appointments!)
6. For God's provision in all the Rosenbergs' needs.

XOXO

Well, It's Been a Long Day (Everyday)

FLYING SOLO
In late July, James dashed off to East Asia for two weeks in order to renew his work visa (among other things). While he was running (necessary) errands on the other side of the world, Laura did her best to keep the family intact. They were both successful, albeit with a lot of help and not without some hardship.

EMERGENCY ROOM VISIT
Soon after James left, Laura had to take Adelyn to the ER after several days of vomiting (frequent spit ups became more forceful until she was projectile vomiting every meal). When changes in diet did not bring immediate relief, Adelyn's team of doctors wanted to rule out any critical complications. She had a series of X-rays, an MRI, and a few other tests. Thankfully, all the imaging and results came back clear, but it was a miserable way to acquire peace of mind. The poor babe had to fast all nine hours at the hospital--and that after a night of only Pedialyte--and that after throwing up for days.

A recent push to boost Adelyn's caloric intake by fortifying her breastmilk meals with formula was thus established as the cause of vomiting by a process of elimination. She is now back on pure breastmilk and gaining weight just fine, much to her mother's (smug) satisfaction.

KLEPTO THERAPY
Another notable misadventure while James was away was the time the occupational therapist stole Adelyn's grandma's phone. Yes, seriously. An old lady who had recently relocated from Florida had begun seeing Adelyn at home for occupational therapy. Adelyn loved these sessions--the kiddo is very into her exercise and baby massage these days. Unfortunately for everyone, Laura's mom's phone went missing the afternoon the therapist came to call. After turning the house inside-out looking for the missing cellular device and coming up empty handed, the next logical (and only plausible) explanation was that the OT might have taken it. We assumed by accident, of course. That is, until she denied walking off with the phone and we* found it ditched in an empty lot next to Dunkin Donuts. Then we had no choice but to suspect her, as the toddlers certainly hadn't smuggled the phone across town. No joke--though it was (is) certainly laughable. Once the phone had been safely restored to Nana, the little drama actually gave us quite a bit of entertainment and comic relief.

(Never fear, though we feel lighthearted about this petty crime, our suspicions were strong enough that we dismissed the therapist immediately.)

*we = Adelyn's aunt and uncle, Kimberly and Jon Chleboun. Really, their private investigative work was impressive! And thanks to Apple's find my iphone service too.

NEXT HOSPITAL STAY
On Tuesday of this week (August 20), Adelyn will be hospitalized for a catheterization procedure to expand the portion of her aorta that has re-narrowed. (She will also be having her tongue-tie clipped.) If all goes well, she will only be kept overnight.

Prayer Requests
Please continue to pray for Adelyn Gray:
1. Please pray that Adelyn will continue to grow and gain weight so that we do not have to trial adding other formulas. We'd very much like to avoid repeating the week of vomiting and hospital run.
2. Please pray that Adelyn will progress in her eating by mouth goals. Specifically pray that she will nurse at the breast well. We cling to the hope that she will take all her calories by mouth by the time she is eight months old.
3. Please ask that God would heal Adelyn's heart, that our little fighter will remain strong, and that her catheterization procedure on the morning of August 20th will be successful in permanently fixing the narrowing of her aorta. May there be no complications.
4. Please pray that clipping Adelyn's tongue-tie will help her eat by mouth with more ease.
5. Please pray that Adelyn's brain will continue to recover and grow normally. Ask that her left vocal cord will also heal.
6. Pray 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! Pray we find excellent nurses and therapists to assist in her care. Especially ones who are trustworthy and reliable.
7. Praise God that Nana's phone was found, recovered, and undamaged!
8. Praise God that James' trip to China was successful! Ask for wisdom and the Lord's guidance as the Rosenbergs consider where their future as a family will take them.
9. Please ask for supernatural rest as James recovers from jet lag and Laura recovers from the exhaustion of solo parenting. For stamina, strength, hope, and sleep for James & Laura. For peace and security for big brother Owen.
10. For God's provision in all the Rosenbergs' needs.

XOXO

Anticipating Turbulence

This past week was a difficult one for the Rosenberg family. After a lovely time with James' folks who were visiting from California, we found out at Adelyn's very FIRST cardiology checkup as an outpatient that her aorta has narrowed again.

It's serious, but not an emergency. The hope is that the narrowing is due to scar tissue that has formed since the original surgery. In a few weeks she will need to have a catheterization procedure to stretch that segment of her heart. Though it will be less invasive than her first surgery, she will go under full anesthesia and be intubated. (Sigh, our poor girl!) If everything goes well, she will only be kept in the hospital overnight, and we can hope she will avoid a long stay in the intensive care unit. Unfortunately, we have come to expect crises and "bumps in the road," as her care team likes to call these medical setbacks.

In addition to that, Adelyn's interest and/or ability to breastfeed has really dropped off. Laura is pretty heartbroken. Though there is a small chance Adelyn will rally, this change is disappointing and does not bode well for our goal that she will be able to take all her calories by mouth anytime soon. She is still taking some (about 40% of a feed) of her breastmilk by bottle, so there's that. We are all doing the best we can, Adelyn included. And that has to be okay. But when our best is different from what we hoped, we must grieve the difference.

Finally, James is leaving for China next week (Monday, July 29th). He needs to renew his visa and business permit. If he allows those to expire, he will have to start the whole process over again (which can take a year or more to complete). We are not yet ready to make a decision about our family's future in China, and this is a necessary trip to leave that door open. With Adelyn needing the catheterization procedure before the end of August, he has to go NOW. He will grab our winter clothes and some of Owen's toys that we left behind; check on our apartment, business, and friends; finish his paperwork; and hopefully return within a week to ten days.

It's all fairly daunting, but we keep on keeping on!

Prayer Requests
Please continue to pray for Adelyn Gray:
1. Praise God that Adelyn's growth rates have improved! Baby girl just hit 11 pounds and is now in the 10th percentile range (up from 1%)! Yay for chubby little rolls!
2. Please pray that Adelyn will progress in her eating by mouth goals. Specifically pray that she will nurse at the breast well. We cling to the hope that she will take all her calories by mouth by the time she is eight months old.
3. Please ask that God would heal Adelyn's heart, that our little fighter will remain strong, and that her catheterization procedure in mid-August will be successful in permanently fixing the narrowing of her aorta.
4. Please pray that Adelyn's brain will continue to recover and grow normally. Ask that her left vocal cord will also heal.
4. Pray 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! Pray we find excellent nurses and therapists to assist in her care.
5. Pray that James' trip to China is quick, safe, and successful. Please pray for Laura as she solo parents, for Owen as he misses Dad, and for all those who will be pitching in to help while James is away.
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 still want to help beyond praying, 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. Give Adelyn the gift of diapers and/or wipes through IncrediBundles. This is a super practical way to help us care for our baby girl!

Thank you for all your help, love, and support!

Our New Normal

Adelyn has been home with us for three weeks now! We celebrated her two-months-old birthday this past Friday, the 28th.

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.

She's Home!

Sweet Adelyn Gray was finally discharged from the hospital! We brought her home last Monday evening after a five week stay. She still has a long road ahead of her, but it's wonderful to be together as a family of four.

May 27
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.