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.