And They All Lived Happily Ever After

So ends the saga of Ingrid Caroline and her omphalocele. The story ends but the characters live on! Ingrid is home in Virginia and acting like a normal 13-month-old. What will the rest of her life have in store?

There are many people we would like to thank for their hard work, their kind gestures, their thoughts and prayers. I’m sure I’ll forget someone and I’m sure I’ve misspelled names but…

…we thank:

Dr. Barksdale – Ingrid’s surgeon, leader of her care, fixer of her belly, creator of her bellybutton

Dr. Ungerlighter – cardiac surgeon for Ingrid’s coarctation repair

Dr. Corteval - for safely delivering our baby

Dr. Abu-Shaweesh – Ingrid’s first neonatologist

Dr. Fanaroff – Ingrid’s second neonatologist

Dr. Sulamain – the UH pediatric cardiologist who diagnosed Ingrid’s coarctation

NICU Nurses: Tracie, Oksana, Lauren, and all the others

Dr. Kovalenko – UH pediatric cardiologist, follow up care

Dr. Albrecht – HDH pediatric cardiologist

Dr. Stork and the rest of the PICU pain team

PICU Nurses

Ken Taylor for the car bed

Ingrid’s OT Sherry for helping Ingrid learn to eat

Grandma & Grandpa for putting up with all this! For offering their home, for donating their time, energy and money to help care for Anna while we were otherwise occupied

Emily & Jim for graciously lending a helping hand, for having us over for dinner many times, for entertaining the kids, for babysitting

Kara Hugo for taking care of Bronze Bow Farm in our absence

Nani & Grampy for their support

Friends and Family across the land for kind thoughts, well wishes and prayers, too many to name but we remember all of you! Prayers have been answered!

Friends and followers, this is Mike Carey, signing off.

Before & After Surgery Photos

These are photos that Dr. Barksdale's team took during Ingrid's surgery. The top photo is her omphalocele right before surgery.

The bottom photo is her incision all stitched up. Can you spot the bellybutton at the bottom? That's a "Belly-by-Barksdale" bellybutton!



Ingrid continues to act more like her normal self. We had a fun walk through a beautiful Cleveland Metropark this morning, lunch out, and then some giggly playtime with Grandma on her bed. I can't tell you how wonderful it is to hear her laugh!

Grandma and Grandpa are babysitting tonight so Mom and Dad can go out for our ten year anniversary!!

All Clear From Here

Ingrid got the all clear from Dr. Barksdale today. There are a few things we will need to look out for, but it really looks like she will get better and better and never look back!

We found out at our appointment today that Ingrid lost a pound in the hospital! She went in at 15 lbs. 7 oz. and weighed in at 14 lbs. 8 oz. today. So, naturally, we will have to continue to monitor her nutrition and see that she gains that weight back. Dr. Barksdale said that children with omphaloceles tend to be smaller (height and weight-wise) than their siblings. Oh well, I guess I will always live with short people!

We'll spend a few more days in Cleveland and then we are all heading back to Virginia on Saturday. The girls are flying and Dad is driving the minivan.

Getting Better Every Day

Ingrid had another great day! After a peaceful walk in the sling with her Dad bright and early the whole family took a long walk to bring Anna to school. And when we got home Ingrid decided that it was time for her to start walking again. With help from parents and furniture Ingrid navigated all over the house!! Needless to say she is feeling better.

Ingrid spent about 2 hours at the art museum with her parents. She decided to walk while there, too.

All this great improvement called for some crabbing in the late afternoon, but I guess she's entitled. An early dinner and bath and now she's scooting around playing with her big sister.

Follow-up appointment with Dr. Barksdale tomorrow. More pictures soon.

Grouchetta at Home

12.5% better each day.
She eats, she crabs, she sleeps, she crabs, she poops, she crabs, she goes on long walks, she crabs, repeat ad infinitum.

Slowly, slowly Ingrid is gaining back her strength and showing us the Ingrid we knew before surgery. But, boy oh boy is she crabby. She is most peaceful when someone is holding her and moving. Not sitting! Moving! In the sling or in the stroller, moving!

She has a good appetite and has eaten well today. And she has had many short naps. If her parents can stand the crabbing, Ingrid will be her old self in no time!

She's Out of the Hospital!

Sorry for the late post today, but Ingrid was discharged this morning and we have been busy taking care of our family.

After a great night of sleep for mother and baby it was decided early this morning that Ingrid could go home. And that was that, we were back at grandma and grandpa's house by 10am! Needless to say that everyone is very much relieved.

Ingrid is still a little crabby, but she's had several good naps, several long walks in the stroller, and several good meals - pb&j, crackers, strawberry shortcake. We have seen a glint of her old smile and she has started to act more like the Ingrid we know.

So now it is just rest and recovery for Kate and Ingrid. We'll have a follow up with Dr. Barksdale on Wednesday and then home to Virginia on Saturday! I will post pictures at some point this week.

Upstairs to R3

Text from Kate 6/24/2011 6:19pm “Cleveland we have poo.”

Ingrid is doing so well! Unfortunately her wake/sleep schedule is messed up so she kept Kate up all night “flinging poo like an orangutan”. In the brouhaha she lost her nasal cannula and was not affected so it was determined that she could be “on room air”. And her extra IV was removed so she has both hands free! She’s had several bottles of Pedialyte and was advanced to milk mixed with formula this morning. Hopefully real food is in the near future.

After a crabby morning wandering the PICU in the sling, we were finally moved upstairs to a regular unit, R3! It is much more peaceful here, so she is able to sleep. And there is an entertaining playroom full of toys!

Dr. Barksdale called us all the way from Philadelphia to let us know that if she has a good night (she’s stable) she can go home tomorrow!!

Miggs on the Mend

Texts from Kate:
6/23/11
7:44pm “NG tube out tomorrow. Start feeds then. Morphine off in am.”
8:04pm “She is peeing like a dickens and has eyelids once again”
8:32pm “I see a beebo [bellybutton].”
6/24/11
6:04am “It was a great night. She is so sweet when she’s not strung out. Swelling way down.”

Ingrid looks much better today – her face is no longer swollen. She woke up this morning and played with her Dad a bit. She enjoyed reading the book that Ms. Sherri sent her. Thanks, Ms. Sherri!!

Ingrid has made great strides today: She is off the continuous morphine drip, receiving it in scheduled doses, and she’s down to 2L at 35% O2 (don’t forget that 21% O2 is normal.) Her NG tube did indeed come out this morning and while Dr. Barksdale was visiting Ingrid had a little poop! In the world of the PICU and major abdominal surgery that is great news! And, to top it off, she was able to have a bottle of Pedialyte this afternoon. (It made her a little gassy, but that just means the pipes are working!)

Anna and Grandma stopped by for a visit. Anna really misses her mother, it’s nice that we can all be in Ingrid’s together. When Ingrid started crying Anna sang Just and Beaver to her, "Baby, baby, baby, oh! Always be mine!"

Ingrid is much mellower today. She’s awake and alert for short periods, playing with books and toys. I can’t tell you how wonderful it is to have our baby back again! Once she is totally weaned off the O2 she will be ready to move out of the PICU.

Crabby Patty

Ingrid is crabby! The general consensus this morning was that she is not in pain so much as just irritated. Ingrid had a crabby night while Kate held her for several hours and then Kate was able to sleep for a bit when her night nurse let Kate in another room.

Overall it was an ok day with a few slow baby steps towards progress. Other than pain control (which is fairly well maintained) the major issue has been Ingrid’s breathing/blood oxygen. Her O2 levels stayed up as long as we were holding her, so Kate and I took turns holding Ingrid all day. Mid-afternoon she tolerated a reduction in her O2 supplement from 55% to 45% so that should continue to go down. We are also weaning her off morphine in favor of a non-narcotic as another step towards getting out of the PICU.

We are also moving forward with some nutrition. Ingrid began receiving TPN this afternoon, although that did require a great multitude of doctors and nurses to find another good vein to replace one of her IVs.

A good sign: Ingrid opened her eyes a little this afternoon and she really seemed like she recognized her parents. Her eyes are swollen (as is the rest of her body) so they didn’t open much more than slits, but she seemed to be more “there” than the last time we saw her pin-prick-pupils.

Tiger Mother

Another rough night: Ingrid’s breathing took a turn for the worse and there was talk of putting her on a ventilator. After much discussion, phone calls among doctors, and Kate putting her foot down that she would NOT spend another night holding her baby’s arms down they decided to use the nasal cannula to increase the pressure in Ingrid’s lungs. The problem is that she is taking shallow breaths and not filling her lungs. This has caused the lower lobes of her lungs to collapse a bit; all normal or at least expected say the doctors. So far this has regulated her breathing and kept her blood oxygen at or near 100%.

They took out her epidural last night, in part because it was coming out and leaking anyway. But they replaced the catheter/Foley bag because her urine output had dropped off. So now they can accurately measure her urine output (a good measure of how fluids are moving inside her) and can measure her bladder pressure to tell how much pressure is being put on the organs in her abdomen. The fear is that the pressure from organs begin forced back into her abdomen will limit or cutoff blood flow there.

And, after multiple sticks, bright lights, and ultrasounds looking for good veins she got another IV in her neck so she would have to be pricked again to draw blood for testing.

Dr. Barksdale was in early this morning to look at Ingrid’s incision and to remove the dressing in hopes that less tension on her chest would help her breathing. Her incision looks great. He left off most of the dressing so now she has only a smallish gauze pad held on by 2 long pieces of tape.

We’ve been told that day 2 or 3 after major surgery is when most patients start to turn towards recovery. At this point the pain team’s plan for pain management is working. Ingrid slept peacefully all morning.

With her pain fairly well managed, the biggest issue now is Ingrid’s breathing. She has been breathing with some forced air to keep pressure in her lungs. We’ve tried to wean her down from 5L at 60% pure O2 but it has been slow with setbacks. She didn’t tolerate going down to 40%, but was ok at 45%. She didn’t tolerate going down to 4L so they bumped her back up to 5L. De-sats continued frequently throughout the afternoon. In time she should be able to take full breaths on her own, but as of now she's having a rough time.

Tiger Mother Kate has not left the hospital since we arrived early Monday morning. She has been a forceful advocate for Ingrid and an invaluable member of her care team. And she was there when Ingrid broke everyone’s heart moaning, “Gaa gaa” (what she calls Kate.)