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Jamaica family relieved at outlook for 3-month-old with rare omphalocele

Despite a few minor details it's a nice little article. (Photo and story by Larry Chowning)

She's a Celebrity

Smiling, laughing, reaching, grabbing, rolling, thriving!

And look at her O! It's almost totally covered with skin. Yes, it's large, but it doesn't slow her down at all.

For those of you who don't know yet: Ingrid's story will be told on "NICU" on Discovery Health channel Thursday, September 9 at 10pm EDT. She's famous!

Lookin' Good

Sorry about no post last week, but no news is good news!

Ingrid saw her Richmond pediatric cardiologist today. He said her coarctation repair looks good. There is some scar tissue, but he didn't think her artery needed a balloon to stretch it, yet. It seems that this procedure is in her future - maybe in a few months, maybe in a few years.

This is the doctor who diagnosed Ingrid's VSD in utero. Now, he says it is all closed up!! No holes in her heart!

And, Ingrid is up to 8 lbs. 5 oz.

Tidbits

Not much to report. Ingrid is doing great! She's holding her head up and is able to hold her weight on her legs for a few seconds, too! She is a great conversationalist: "Oh...Aah...Ow!"

Ingrid's omphalocele is looking great, too. We haven't dressed it in over a week. Most of her O is covered with skin and what little that isn't is covered with a tough scab. We were skeptical when, long ago, a doctor told us this would be the case, but here we are and her O is obviously healing.

Ingrid has been to church two times! We felt that we needed to personally thank some of the wonderful people who have been praying for Ingrid.

Ingrid is definitely thriving at home! Her sister continues to be helpful and loving.


Yes, Ingrid is quite comfortable with farm life. (If you look closely you can see her goat in the background!)

Well Baby

Ingrid is settling in to our routine here in Virginia. Eat, sleep, poop. She is often awake and alert and interested in her new surroundings. And Anna continues to dote on her little sister!

Ingrid had her 2 month (already!) "well baby" check up with her local pediatrician. She checked out well at 7 lbs. 12 oz. and 20 1/4 inches long. She is still little, but she is eating well and we are confident that she will grow and be healthy.

Her omphalocele is looking better and better. There is only a small portion that is not covered with skin yet. In fact, it is looking so good Mommy has started giving Ingrid baths in the sink! (Mommy is very careful not to get the O wet, though.)

Home Home!

Ingrid is home in Virginia!!!

Daddy drove the car and the cat yesterday and today, the girls flew home!!

Ingrid has enjoyed checking out her new surroundings and meeting R.B., the dog. Our lives are quickly getting back to normal - normal with a new baby, of course! Ingrid will go to see her Virginia pediatrician for a well-baby checkup on Monday.

What a weekend: It was wonderful to see so many family members at Auntie Emily's wedding - even Ingrid was there! What a great way to end our grand adventure in Cleveland.

And, of course, we must extend our most heartfelt thank you to Grandma and Grandpa for their hospitality in Cleveland, their help with Ingrid and Anna this summer, and their extreme generosity! You two have gone above and beyond for us and we are eternally grateful.

Summertime Fun

Now that Ingrid has been out of the hospital for a while she has been able to enjoy some summertime fun.

She has joined us for dinner in the backyard, hiking along the Chagrin River and even spent a day at the beach! (Thanks again Wattersons!)

Ingrid is eating well and gaining weight. Mommy is helping her work on her neck muscles - she can hold her head up for short periods of time. Her omphalocele is looking better and better - there is only a small area that is not covered by skin.

We are all looking forward to Auntie Emily's wedding and then going home to Virginia!!

Thriving at Home

Ingrid is enjoying being home! She eats every 2 hours day...and night!!

She was weighed at the doctor's office yesterday, she is now 7 lbs 0.2 oz.

The doctor also gave us the go-ahead to go back to Virginia! We will stay in Cleveland through the end of the month and then head home home the first week of August.

Ingrid thinks her big sister is funny and smiles when she's around. And Anna loves to help take care of her little sister. She can even hold Ingrid by herself!

Ingrid is developing just like a baby should - she's working on holding her head up and reaching for objects. She loves to look at faces and smile. She can even hold a conversation! Mommy and Daddy are learning how different Ingrid is from her big sister - the most notable is the fact that she is wide awake (but thankfully mellow) between the hours of 8 and 10pm. That's when we walk around the block or just hang out on the bed together.

A Mom and Her Girls

Ingrid is more and more like a regular baby - eat, sleep, poop. She enjoys long walks outside and to stare lovingly at parents, grandparents and big sisters. She loves her new sling and looks forward to exploring the art museum and the Cleveland Metro Parks, maybe even the zoo.

Now that Ingrid is home I think that blog posts will be less regular. I'll post news when it occurs - perhaps weekly.

We truly appreciate all of the wonderful messages of support, the prayers and the good thoughts. Thank you!!

First Full Day at Home

Ingrid had a great night, she ate every 2 1/2 hours throughout the night. Therefore Mommy and Daddy woke up every 2 1/2 hours throughout the night! (Credit where it's due: Mommy did most of the work.)

Ingrid continued her routine all day like clockwork.

She had a visit from a home-care nurse with a scale: Ingrid is now 6 lbs. 9 oz.!!

Great news that she is finally above her birth weight. She is eating and gaining weight just like a baby should!

HOME!!!

Words cannot express the joy we have today!

Ingrid is out of the hospital!!!

She is home at Grandma and Grandpa's house in Cleveland attended by a excited and helpful big sister.

What a grand adventure we have had - and it's only just beginning!!

One More Day?!

Ingrid continues to gain weight! A whole ounce since yesterday.

She had a great day today, too, so she will be coming home tomorrow!!!!!

The final weigh-in is at 9pm tonight. If she passes, she's coming home!

40 grams

Ingrid had a great night - she had about 45mL per feeding overnight!! And she has gained 40 grams! It looks like we just might be leaving the hospital on Monday.

Mommy and Daddy took turns feeding Ingrid today. Her OT stopped by to observe her feeding and said she looks great.

In preparation for discharge, Mommy and Daddy took an infant CPR class at the hospital this afternoon, something we pray we never have to use.

Hopefully Ingrid will continue to eat and gain weight this weekend so we can go home!!

Weight Wait

Ingrid had a great eating day yesterday but did not show a weight gain. And today she did not have a spectacular eating day. We are eager to get home and this process is very frustrating. When Ingrid begins to gain weight we can go home, but she doesn’t seem to eat enough. Her breastmilk is mixed with ever increasing amounts of formula in hopes that she can gain weight, but she just hasn’t taken in enough.

We still hope to take her home from the hospital early next week, but right now there is a good chance that she will go home with an NG tube. If that is the case, she will eat all she can during the day and the rest of her daily intake will be pumped in overnight. Hopefully that won’t have to happen, but it all depends on Ingrid. She is so cute and she has no idea how much she stresses out her parents!

Ingrid had an ultrasound of her heart today. The cardiologist said everything looks good, that her coarctation is "not there" (meaning that it is repaired) and that there is a diminishing amount of turbulence around her repair.

And in other news: Grandma came to visit and enjoyed holding Ingrid for a short time.

Eat, Child!

On her first day with no feeding assistance (yesterday) Ingrid did not perform as we had hoped. However, today she ate like a champ! Her doctor decided to let Ingrid eat when she was hungry instead of on a rigid 3 hour schedule. She managed about 30mL mid-morning and a whopping 45mL in the early afternoon!!

We also worked on fitting Ingrid into a car seat. Unfortunately, she does not fit into the seat that Daddy bought yesterday - her omphalocele is right where the buckles need to be and we cannot take the chance of damaging her O. Luckily, Rainbow Injury Prevention loaned us a car bed. The car bed is like a plastic bassinet with a seat belt to restrain her. Supposedly it will fit in the backseat right next to Anna's seat.

Ingrid had another visit from Dr. Barksdale (her surgeon). He was impressed with how great her O looks. We are going to stop using the bacitracin ointment and we are going to leave her O uncovered for a few hours a day. This should speed up the drying out and toughening which, in turn, will speed up the healing.

We seem to be continuously moving in the right direction. Ingrid's doctor told us how far ahead she is, that other babies she has treated were in the hospital for many months, but Ingrid is getting herself ready to go home. When she is gaining weight we can go.

The refrain, over and over again, is: eat!

Moving Forward

Things are moving forward. Ingrid's feeding plan now includes some (legal) nursing. To spur her on a bit her doctor decided to remove Ingrid's NG tube so that she has to get all of her food through her mouth and by herself. She will get milk direct from the source alternated with a bottle of MBM supplemented with high calorie formula. Now Kate can breastfeed and Ingrid has zero tubes sticking in her!

There is nothing like seeing her beautiful face without tubes and tape on it!!

We met with Ingrid's surgeon today and he said it would be alright for us to go back to Virginia when we are discharged from the hospital. We still haven't figured out how we will transport her in a car, but we are working on it. We do plan to stay in Cleveland at least until the end of July. After that Dr. Barksdale (her surgeon) will want to see Ingrid every 3 months. He said that the earliest they would do her closure surgery would be next May, in part because the winter (cold and flu season) months pose too great a risk of infection.


We took some pictures of Ingrid's omphalocele today to document how it has changed. Her O is getting smaller and more granulated. There is much more skin growing up it than when she was first born.



Hopefully Ingrid will eat and gain weight over the next few days so we can go home!

Sneaky Snacker

Ingrid continues to improve. She was able to eat about 30mL all by herself this morning! That was her best effort today, but her other feedings were admirable as well.

Incidentally, Ingrid discovered the joys of between meal snacking (which is probably why she didn't eat so much at 3pm.) Don't tell her doctor or Mommy might get in trouble!

Ingrid's weight is creeping up - 5 grams today - but at least it is moving in the right direction.

When she doesn't finish a meal on her own the rest is slowly pumped down her NG tube. The second picture is Ingrid finishing her 3pm meal.

Walkabout

Ingrid is free of one more tube!! She got her PICC line (peripherally inserted central catheter) out today!

To celebrate her new freedom we went on an R4 walkabout. We looked out the windows and admired the artwork and said hello to all the nice nurses.




Now the only thing tying Ingrid down are the pulse-ox and other monitor wires. She still has the NG tube because she still needs a little help with her feeding.

Speaking of which, Ingrid's weight is increasing very slowly so it was decided to supplement her Mama's milk with a scoop of formula (mixed in with the MBM). The hope is that a few more calories will help her gain more weight more quickly.

Even though she isn't able to eat a full 50mL on her own Ingrid did a great job feeding today: 20mL at 9am, 23mL at noon and 21mL at 3pm. All respectable numbers considering it was only last week she was only having 5-8mL per feed total!


This afternoon Auntie Emily and Uncle Jim came by for a visit. Ingrid was wide awake and invigorated from her walkabout. Auntie Emily was even able to hold an untethered baby!

Happy R4th of July!

Ingrid is now up to 50mL per feed – a full feed for her! She still isn’t able to do all that herself, but she ravenously attacked her 9am feed this morning and got about 14mL.

Her weight isn’t increasing like we want it to yet, but she is totally off her TPN so Mama’s milk should help fatten her up! She still has her PICC line in (the deep IV in her left leg) but only until pediatric surgery says we can take it out (hopefully tomorrow).

Have a safe and happy Independence Day!

Hey Sister!

Ingrid had a very special visitor today: her big sister, Anna!!

Anna is very excited about having a little sister - you can't see it but the name on her yellow visitor's pass is "Big Sister".

Anna was very gentle and helpful, offering toys and blankets and pacifiers and hugs and kisses. She enjoys visiting the hospital because there are toys and books for her too!

Ingrid continues to do well. At 9am she was able to eat about 20mL of her 37mL by herself. I think it was easy to keep her awake with her big sister around! She will stop her TPN today and subsist entirely on Mama's milk.

Ingrid stayed awake for a good long time to visit with Grandma and Big Sister. Big Sister even got to hold her!!!

R4

Ingrid's first 24 hours in R4 was great!

The goal of the unit is to get babies ready to go home. Needless to say we are excited to have doctors and nurses all working and planning to get Ingrid feeding and gaining weight so we can take her home.

One change that they made was in the dressing change schedule. Instead of 3pm and 3am we will change Ingrid's O dressing at 9am and 9pm. They don't want Ingrid to think it is normal to be awake at 3am!! Thank you!!

Today Ingrid's doctor upped her feed to 37mL and said that she will get off her TPN (her IV nutrition) tomorrow! Then it's just MBM (that's "maternal breast milk")!

Ingrid's weight is slowly creeping up although she is still below her birth weight - she was weighed this afternoon and was 2.90kg (she was 2.93kg at birth). Hopefully she will continue to gain and gain.

Ingrid had another session with her OT to help her gain strength and learn to suck down all her MBM. She worked hard and got about 17mL on her own before she was completely worn out.

R4 is a quieter place than the NICU - there is much less activity in and around Ingrid's room. Kate held her for most of the morning while Ingrid slept.

A Big Move

It was a big, big day for Ingrid! Today she moved out of the NICU and into R4 - the Neonatal Transitional Care Unit. All NICU babies spend time in R4 before they are discharged and allowed to go home. This is another step in the right direction!

It was bittersweet and a little scary to leave the familiar surroundings of the Raindrop pod for the next chapter in our journey. We have nothing but praise and thanks for all our wonderful nurses and staff in the NICU!

Before Ingrid left her NICU home she was moved into a "big girl" bed. Mommy and Daddy packed up all our belongings and followed Ingrid as she was wheeled down the hall to R4.

Ingrid's new room is quite large with its own private bathroom. We can see trees and sunshine through her window.

It is a little scary moving to a new room and a new unit. Everybody has a lot to learn. Ingrid's big job is still working on feeding and gaining weight. She is up to 32mL per feeding today, but she still is having trouble doing it all herself. The move to R4 makes us even more eager to bring her home but we know that Ingrid will need some time to learn how to eat all she needs.

We spent the afternoon relaxing and getting used to our new digs!

More Good News

Ingrid has been doing so well her doctor decided to push her a little today: She'll get 4 feedings of 22mL and then go up to 27mL. (Instead of 24 hours and 8 feedings at one amount.)

He also said that we might be moving to the step-down unit tomorrow!!!

She is stable and fully recovered from her surgery, her only issue is working up to full feedings which she doesn't need to do in the NICU. We are that much closer to going home!

We had a visit from an occupational therapist to assess how well Ingrid is able to feed and what we can do to help her get where she needs to be. It was a very helpful and informative session.

In other news: Grandma surprised us with a visit and enjoyed watching Ingrid have her lunch. Grandmas was excited to see Ingrid with her eyes wide open!

21 Days

Ingrid is 3 weeks old today!

Daddy held Ingrid for a long time today and helped her suck down 17mL!

She has been doing a great job with her feeding. So much so that her doctor said that she might be transferred to the step-down unit (Neonatal Transitional Care Unit) by the end of the week!!! That's one step away from being home!!!

Of course this all depends on what Ingrid decides to do with her food in the next few days. She has had a great streak, increasing her feeds by 4 or 5mL per day for the last 3 days.

We are optimistic, cautiously optimistic, but optimistic!