Holidays and the Hospital

G TUBE SURGERY
On November 15th, shortly after Laura & James celebrated their 10-year-wedding anniversary, Adelyn had surgery to place a G Tube. While under anesthesia, she had a low profile button placed that allows us to pump breastmilk and medicine directly into her stomach. The surgery was successful and straightforward, though her recovery was not. The anticipated three-day hospital stay stretched into five days as we and Adelyn's medical team worked hard to manage her pain and help her tolerate the new feeding process.

What complex emotions surrounded this event.

There were clear benefits, like a semi-permanent solution to getting our baby nourishment, and thus the invaluable ability to keep her alive! It was also wonderful to be rid of the NG Tube that was a constant source of irritation and discomfort. How we love seeing our baby girl's face without tubes taped across her sweet cheeks!

On the flip side, there is our disappointment that she is refusing to eat by mouth, the pain of watching her go through another surgery, the frustration that she continues to experience discomfort during meals, and the exhaustion of a feeding routine that is so time consuming.

As it has been with each new scar, it was a shock to see the plastic "button" protruding from our sweet baby's belly for the first time in the hospital. Despite the hundreds of conversations and pictures and demonstrations to help prepare us, it was still an unwelcome change. How can Laura, as her mother, describe that feeling to you? The beautiful, smooth skin that we once kissed and blew raspberries upon is now obstructed with a constant reminder that our child is dependent upon a machine to eat.

Now, many weeks since Adelyn's surgery, the G Tube has normalized for us and is just part of her baby routine and care. But because she continues to eat seven times a day, struggles to keep meals down, and has lots of discomfort around feeding, it seems like we are in a constant battle to keep her nourished. Thankfully, though we have not yet achieved what we hoped in many of her feeding goals, Adelyn has continued to gain weight and grow.

HALLOWEEN, THANKSGIVING & CHRISTMAS
Holidays have been both sweeter and more challenging with Adelyn's medical needs. It has been strange to find ourselves in the hospital for doctor appointments on the eve of major holidays, or to have to figure out alternative therapy times to Christmas Day. You have heard it said that moms don't get sick days. Well, Adelyn doesn't get a break from having special needs either.

Nevertheless, celebrating Adelyn's firsts as a family has been precious, and perhaps even more so because we are constantly reminded that each of her milestones and every day of her life is a miraculous gift.

James' parents came from California in late October, and Owen took costume inspiration from Durham's Life & Science Museum for our evening of trick-or-treating. Adelyn went as a Monarch butterfly, Owen as a ring-tailed lemur, James as a red wolf, Laura as a museum employee, and Dave & Joy as astronauts.

For Thanksgiving, Laura's parents and brother traveled to us and took over the Chlebouns' house (while they were out of town) and cooked a feast! We probably would've eaten at Pizza Hut had it not been for their labors of love in the kitchen.

And this past week our family of four traveled to the coast to spend the week of Christmas with the Chapmans and were later joined by the Chlebouns. It was Adelyn's longest trip in the car by far (unsurprisingly she screamed most of the 2 1/2 hour drive), and only her second time to church (she slept through the Christmas Eve service outside because the auditorium was far too loud) but it was so worth it to be together with these loved ones for baby's first Christmas.

GROWTH
Today, December 28th, Adelyn is eight months old! Adelyn has cut her first two teeth, has begun to hold her head up independently for longer periods of time, is log rolling across the floor, is adding new consonants to her babbling, and is practicing sitting up in a specialized chair. Her shrieks of excitement and laughter (what paralyzed vocal cord??), her fixation on books, mirrors and lights (several tentative vision diagnosis have recently been removed from her list of problems), and her ability to play with her toes, grasp toys, and chew and suck on her paci (initial motor skill development goals met!) have us cheering daily. If ever we feel discouraged, we turn our eyes upon Christ and give Him thanks for all the ways Adelyn is a precious part of our lives and exceeding expectations.

FUTURE PLANS
Since our baby girl's birth we have hoped that there may yet be a chance that our family could return to our lives and work in East Asia. At the same time, Adelyn's health and growth is our first priority, and we will not overlook the wellbeing of any member of our family as we consider next steps. While we feel reluctant to step off the eight-year toehold we have chiseled out overseas, it is evident that we must explore options closer to the medical care Adelyn currently needs. One of the opportunities we are considering is working with international students on one or more of the campuses nearby. This would allow us to use our language skills and cultural knowledge locally, while maintaining those gifts in the event that we could one day return to our international work.

Prayer Requests
Please continue to pray for Adelyn Gray and our family:

1. Upon hearing Adelyn's feeding therapists and nurses complain that it seemed like she still has a tongue tie, we scheduled a follow-up with her ENT specialist. (Adelyn had her tongue tie clipped while under anesthesia for a catheterization procedure several months ago.) The specialist confirmed that the revision was unsuccessful. Because we desire to avoid another full-fledged surgery, she will have her tongue clipped (AGAIN) with local anesthesia on January 3rd. As she is slightly older than normal for this to take place as an office procedure, pray she will be cooperative and not experience any undue pain!

2. As we gear up to introduce Adelyn to solid foods, please pray that her tongue heals quickly, that her gag reflex becomes desensitized, that she develops a taste for purees, and that she enjoys these new aspects of eating as they are introduced to her! Also pray that her acid reflux discomfort and feeding intolerance issues diminish.

3. Please pray that her brain continues to grow and develop healthily.

4. Pray for Adelyn's strength and development! Ask that she would continue to make strides in holding her head up and sitting upright.

5. Please ask 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 and doctors who assist in her care.

6. Praise God that Owen seems fully recovered from his concussion! And also that he is such an awesome big brother. Please continue to pray for him as he navigates big feelings around sharing his parents, fear of "babies dying," has unsatisfying answers when he asks about when we'll "go home to China," and all the other challenges that come standard to toddlerhood.

7. Please pray for God's provision in all the Rosenbergs' needs. Pray we would clearly hear God's voice as we seek His direction and will for our lives.

Eating is Hard

TUBE FREE FEEDING TRIAL
In early October, Adelyn's feedings began to take a turn for the worse. With nothing to lose, we gained the approval of her medical team and initiated a tube free feeding trial. Our hope was that if we pulled out the NG tube and allowed Adelyn to experience hunger between bottle feedings, she would have more motivation to eat her meals by mouth.

For three days Adelyn drank her breast milk by bottle alone. It was exhausting work for everyone. Adelyn had to eat every two hours around the clock in the attempt to keep up with the minimum liquid intake required for hydration. On the morning of the third day, Adelyn had some of her personal best and largest meals ever! We were so proud of our fighter! Alas, later that afternoon she quit eating almost entirely. She was plain worn out. When she stopped having wet diapers, we knew it was time to replace her NG tube.

Even at her best, Adelyn remained shy of her goals for hydration, and she was far from the volumes that are necessary for healthy nutrition and growth. It was a good experience for our family, as it showed us her strength, as well as revealed her continued need for help eating. We feel better able to accept the next steps in Adelyn's journey, and appreciate her medical team's support as we gave Adelyn some freedom to try things on her own.

G TUBE
As Adelyn approaches her half-birthday (she'll be six months old on October 28th), the deadline for getting off a NG tube has arrived. On November 15th, Adelyn will have a G tube surgically placed in her tummy. If all goes well, she will be hospitalized for three days. (For those of you who heard that her surgery was scheduled for James & Laura's anniversary, the original date was changed because the surgeon will be out of town on November 7th. While we are frustrated that the procedure has been pushed back, we are grateful we do not have to spend our 10-year-wedding anniversary in the hospital.)

(Thanks, Nai Nai and Grandpa for the Duke outfit!)

We are sad that Adelyn needs a G tube. It means another surgery, it means another hospital stay, it means another scar, it means new feeding challenges, and it means Adelyn is on a much longer road to learning to eat by mouth than we want for her. On the positive side, she will no longer have a tube irritating her face and throat. Her acid reflux symptoms may improve with the NG tube removed. It won't be as easy for her to pull the G tube out (as it will be under her clothes), and she will be able to have her hands free!

Adelyn will continue to work on her feeding skills, but the hope that she will take all her calories by breast or bottle has passed. We are now looking toward more long term goals of her learning to eat "by spoon and cup."

GRANDS, BEACH, AND A PUPPY
Owen and Laura took a mother/son weekend away. We enjoyed being together with the Chapman grandparents, Uncle Mark, and the Chlebouns. There were fun surprises like a new boxer puppy, and wonderful adventures like a blustery morning at the beach.

It was a refreshing change of pace and scenery, but we were eager to get back to Daddy and Addie. We missed them terribly while we were gone!

OWEN TAKES A TURN IN THE ER
A week ago Owen suffered a concussion after falling from a swing at the park. (As if we didn't have enough excitement and medical crises in our household, right?) Laura took our poor kiddo to an urgent care after he began vomiting, and he was later transferred to Duke Children's ER via ambulance.

A CT scan showed that there was no critical head trauma, but other symptoms led to a diagnosis of a nasty concussion. He was kept all afternoon and evening for observation and then released home with directions for us to keep close watch over him and limit his activities.

He's doing ok, but we've been cautioned full recovery from the bonk on his head may take anywhere from one week to six months. Whew. Though most of this experience was no fun at all, Owen has been a trooper and even enjoyed parts (like the ambulance ride and praise from doctors and nurses). We know accidents are a normal part of childhood, but man. Sometimes it feels like we can't stay out of the hospital!

Prayer Requests
Please continue to pray for Adelyn Gray and out family:
1. Please pray for Adelyn's surgery on November 15th to place a G tube. Ask that she heals quickly and with a minimal hospital stay. Pray that the gains from the switch to a G tube outweigh the negatives. May she progress in her eating by mouth goals, and may we succeed in keeping feedings positive experiences. Pray against an aversion to the bottle!
2. Please continue to pray that Adelyn's brain will recover and grow normally. Ask that her left vocal cord will also heal.
3. Pray for Adelyn's strength and development. Praise God that Addie is starting to hold her head up for short periods of time in an upright position! Next, please pray she will be able to lift and hold her head steady from a prone position.
4. 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. Please pray that Owen will recovery fully from his concussion soon. Especially ask that his transition back to preschool is uneventful.
6. For God's provision in all the Rosenbergs' needs.

Help!
With Adelyn's surgery on November 15th, Laura's sister has relaunched the MEAL TRAIN for our family. Not needing to worry about dinners during the week of her hospitalization and in the weeks following as we work on new feeding routines will greatly ease some of our daily stress. Thank you!

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.

One Month Old!

May 20
Adelyn is declared fever free! We continue to wait for lab results (which take 48 hours to culture) to see whether she has an infection.

Genetic test results came back normal, which is great news!

That morning, Adelyn had three apneic episodes (brief periods when she stops breathing) while awake. She recovers without much intervention (aside from repositioning and blowing in her face), but has scared Mom (who was bedside) and nurses alike.

Through the afternoon, doctors look for reasons for her apnea. Adelyn has a chest x-ray, a head ultrasound, and a series of x-rays to follow the path of her shunt, all of which come back normal. This means her apnea is not being caused by an issue with her lungs, a problem with her heart repair, or a mechanical failure with her shunt.

May 21
Lab results come back showing that Adelyn does not have an infection! The last of her stitches from her heart surgery are removed.

However, Adelyn's discharge from the hospital is put on hold for at least five days as doctors continue to explore possible causes for the previous days' apnea. Late Monday night her head was covered with 25 censors and wrapped in gauze as neurology watches her through a camera and evaluates her brain activity during a seizure study. After 12 hours the results are inconclusive, so they decide to continue monitoring Adelyn for a full 48 hours.

May 22
The seizure study ends, and doctors conclude it's unlikely Adelyn's is having seizures. Her head is unwrapped.

Acid reflux becomes the main suspect in the hunt for a cause of the apnea. Though she is already being treated for reflux, she is prescribed an additional medicine and nurses begin "venting" her more frequently (an pediatric critical care method of burping an infant by pulling air out of the stomach through the feeding tube).

May 23
Thursday morning Adelyn has another apnea episode where her oxygen levels dropped all the way to 30%. She has quite an audience for this performance, as the Chapman grands and Chleboun family were visiting and Adelyn's team of doctors (who were in the middle of "rounds" where they make a daily visit to see and discuss each patient's care) were all at her bedside. Later in the day she had another apnea event where she desaturated dramatically again. James and Laura are thankful doctors were able to observe Adelyn during one of these, and also grateful Adelyn recovers from both without intervention.

Adelyn's discharge clock is reset and her release date is pushed back another five to seven days. James and Laura are disappointed that her homecoming keeps getting delayed, but they are grateful to be in medical care rather than at home during these frightening moments when their daughter stops breathing.

The seizure study head gear goes back on. Neurology hopes to be able to catch one of Adelyn's more serious episodes while closely monitoring her.

May 25
Laughably, Adelyn does not perform her tricks for neurology. Nevertheless, they once again conclude with a fair amount of confidence that she is not having seizures. Doctors agree gastro-intestinal issues are the most likely cause for her apnea.

May 26
Adelyn is a month old! Happy four weeks of life, sweet baby girl.

James, Laura, and all of Adelyn's nurses and therapists continue to help her work towards feeding and growth goals. Adelyn is slowly gaining weight and strength. Doctors say they will revisit her discharge after the long weekend.

Now
Please pray:
1. Praise God that Adelyn's fever has resolved and that she is infection free!
2. Praise God that her incisions have all healed!
3. Praise God that she is gaining weight and strength!
4. That the cause for her apnea will be discovered and properly addressed to mitigate future events so she can go home safely.
5. That her acid reflux meds would treat her discomfort and that she would learn to take breastmilk from a bottle and then learn to breastfeed.
6. That discharge will become a reality for Adelyn soon, and that James and Laura would be competent and feel confident in all aspects of their daughter's care.
7. 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. As Adelyn's time in the hospital extends, we are more and more grateful for your continued help. 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.

Our Little Fighter

Adelyn is now three weeks old! She is such a little fighter. Praise God for how He's been sustaining our sweet baby girl. Here is an update from the past week.

May 14
The neurosurgeon who placed Adelyn's shunt said "I couldn't ask for anything better. This is her best case scenario," while reviewing the newest MRI images of her brain. Her stitches were removed.

After waiting a week for a spot to open up in an over-crowded NICU, Adelyn was instead moved to a pediatric step down unit. Though James and Laura were thrilled that Adelyn was doing well enough to no longer need intensive care, the change to a transitional floor was a hard one.

May 15
We continue to work toward Adelyn's feeding and growth goals with speech, lactation, dietician, occupational, and physical therapists (in addition to the nursing staff).

May 16
The nursing staff in the step down unit begin to equip us to take over Adelyn's care with the goal of bringing her home on Monday! Training in how to operate, replace, clean, etc. her feeding tube is the most challenging part, but with a vision of soon being together as a family of four, we eagerly worked toward the necessary skills. We also got busy creating a nursery of sorts for our daughter's sooner-than-anticipated discharge from the hospital. Adelyn passes a car seat test (meaning she can safely ride in a normal infant car seat).

May 19
Adelyn turns three weeks old! Though we had been preparing to bring Adelyn home on Monday, she spiked a fever on Sunday morning, and plans for her discharge were placed on hold.

Now
Please pray:
1. That Adelyn will quickly recover from her fever and doctors will be able to identify the cause. 
2. That her brain will continue to recover and grow to a healthy state.
3. That her heart surgery incision site would heal completely.
4. That she will be able to digest her meals well, gain weight and meet growth goals, as well as learn to bottle and then breastfeed. May the antacid meds help her feel more comfortable.
5. That James and Laura would be competent and feel confident in all aspects of Adelyn's care.
6. For Owen, as he prepares for yet another big transition in welcoming his baby sister home.
7. For God's provision in all the Rosenbergs' needs.

Help!
Again, please do not underestimate the power of your prayers. The time each of you spend in prayer with us is so valuable! Thank you! Thank you too for the meals, cards, and gifts. So many of you have already helped in significant ways and blessed our family with your generosity! We're grateful.

If you would like to help in other ways, here are three further ideas.

One: If you are local to Durham, NC, you might like to participate in the MEAL TRAIN Laura's sister has set up for our family. Not having to worry about cooking meals every night has been such a relief.

Two: We have made a GIFT REGISTRY for Adelyn. As her hospital discharge nears, we are busy trying to collect all the baby paraphernalia that will help her homecoming feel celebratory! On this registry there is also an opportunity to make a financial gift that will be used toward Adelyn's medical expenses.

Three: If you would like to make a tax-free contribution toward Adelyn's medical expenses, please get in touch and we'll provide you with information about how you can do that.

XOXO

Adelyn Gray

April 28th

Welcome, Adelyn Gray Rosenberg to the world and our family! We're so excited that this sweet baby girl is here! She made her debut even earlier than expected and was born Sunday, April 28th at 12:08 PM. Laura went into labor in the wee hours of Sunday morning, so her c-section scheduled for Tuesday was hastily moved up. Adelyn weighed 6 pounds, 14 ounces, and measured 21 inches long at birth. She went immediately to the NICU.

April 30th

As most of you know, our daughter has serious health complications. She was diagnosed with hydrocephalus during her 22-week prenatal anatomy scan. And as anticipated, she had surgery shortly following her birth to place a shunt in her brain to drain off the excess fluid. The pediatric neurosurgeon said it went well.

Owen, who'd been splitting time between both sets of grands while the immediate members of his family were in the hospital, went to visit Laura for the first time since Adelyn's birth.

May 1st

Laura was discharged from the hospital.

May 2nd
Adelyn was stable after her brain surgery, and so Owen came to the hospital to meet his baby sister. It was such a sweet time for the siblings! Owen wore his new "big brother" t-shirt, saw the drawing he'd made her hanging on her NICU bassinet, held her with daddy's help, and gave her a bunny lovey. "Aw, she's so cute!" he said. "I love her little nose."

Just a few hours later, James and Laura were called back to the hospital because doctors had found a problem with Adelyn's heart. She had a coarctation of the aorta. This birth defect is rarely detected in utero because mom's blood bypasses that spot. It's often a fatal defect, as babies go home just fine, and then as mom's blood stops flowing hours/days after birth, babies have a cardiac event or stop breathing while the problem is still unidentified. In Adelyn's case, her only symptom was a slight difference in blood pressure reads between her upper and lower body, which triggered concern with the staff in the NICU. They ordered another echocardiogram, and they caught it. (Praise God for the diligence of the NICU staff and that all that poking, prodding, and testing saved Adelyn's life once again.)

Late that afternoon, Adelyn was transferred from the NICU to the PCICU (Pediatric Cardiac Intensive Care Unit).

May 3rd

Less than 24 hours later, Adelyn had heart surgery. A thoracotomy. The pediatric cardiac surgeon said it was a successful, but difficult operation.

May 5th

Following her second surgery, Adelyn had so many tubes and wires and bandages that no one was able to hold her for several days. As doctors worked toward extubating Adelyn, they withheld most pain medications to keep her alert enough to do trial runs of weening her off the ventilator. The one-week anniversary of her birth was an excruciating day as Laura watched, "hand hugged," wept by the bassinet, and sang to her daughter as Adelyn struggled and cried.

May 6th

Adelyn was successfully extubated! Free of the ventilator and breathing on her own, she was slowly weened from a little oxygen cannula that was placed under her nose. She also began breastmilk feeds through her ng tube, and pain management became a higher priority. It was such a relief to see Adelyn more comfortable. Laura and James got to hold her for the first time since her heart surgery.

May 7th

As various doctors and therapists continued to watch Adelyn's recovery from both surgeries, it was discovered that one of her vocal cords had been damaged during her heart surgery. (Though a risk of which we'd been warned and a common occurrence in cardiac repairs, it was nonetheless hard news to hear.) She was also vomiting during feeds as her gut struggled to digest even small breastmilk meals.

The good news was that her chest tube (from her heart surgery) was removed, as was her oxygen cannula (she was once again breathing without any aids). It was nice to see our baby girl continue to shed tubes, cords, and lines. The neurosurgen also removed the bandages from her shunt surgery.

Adelyn's name was placed at the top of the list to return to the NICU, which was full.

May 10th
Adelyn's incision from her heart surgery had become obviously infected. In addition to antibiotics, the doctors changed the bandages and taped a vacuum hose to the seeping wound.

Owen visited his sister for the second time.

The NICU remained full, so Adelyn and her parents continued to work with lactation, speech, occupational, and physical therapists toward growth and recovery goals.

May 12th
On Mother's Day, we celebrated the two-week anniversary of Adelyn's birth! That is two weeks longer than some doctors predicted she would live. Praise the Lord. Adelyn has shown herself to be remarkably strong (and sweet)! We are confident she'll make it home from the hospital. Praise the Lord. And more than that, we have so much hope that she will be able to experience a high quality of life! Praise the Lord!

Now
Please pray:
1. That Adelyn will soon be able to return to the NICU now that her cardiac issues have been resolved.
2. That her brain will recover and grow to a healthy state.
3. That the antibiotics will clear up the infection at her heart surgery incision site.
4. That she will be able to digest her meals well, gain weight and meet growth goals, as well as learn to bottle or breastfeed. May the antacid meds help her feel more comfortable while eating.
5. That Owen, who has struggled with some separation anxiety, would feel safe and secure in his parents' love.
6. For an abundance of strength, patience, and grace for James and Laura.
6. For Gods' provision in all the Rosenbergs' needs.

Help!
First, please do not underestimate the power of your prayers. Adelyn's life is a gift from God, and we are incredibly grateful for every soul that is calling out to Him for her health and wellness with us!

If you would like to help in other ways, here are three further ideas.

One: If you are local to Durham, NC, you might like to participate in the MEAL TRAIN Laura's sister has set up for our family. Not having to worry about cooking meals every night (as Laura recovers from her c-section and we are trying to maximize our time both at home with Owen and at the hospital with Adelyn) has been such a relief.

Two: We have made a GIFT REGISTRY for Adelyn. We anticipate that she will have some specialized needs, and we will likely update this registry to ask for assistance with those as they materialize. But for now, we are looking toward her home-coming and creating a nursery stateside. (It is apparent that she will need a more traditional set up than our jet-setting first child, Owen.) On this registry there is also an opportunity to make a financial gift that will be used toward Adelyn's medical expenses.

Third: If you would like to make a tax-free contribution toward Adelyn's medical expenses, please send us a note and we'll provide you with information about how you can do that.