Freedom

Freedom

What happened?

Wilhelmina inhaled a very large amount of meconium just before birth. The stress of that put incredible pressure on her heart and lungs, so in order to help her heal, she was put on an ECMO machine for 7 days, and was in the hospital for more than 5 weeks. She is still in recovery, but able to do it in the comfort of home. 

  Thank you, CHOP! Thank you to the medical teams in the NICU and in 5East!

Thank you, CHOP! Thank you to the medical teams in the NICU and in 5East!

7/18/2018

Wilhelmina got sprung! Out of the hospital in time for dinner, with prescriptions in hand and an NG tube to help her keep working on eating. She left the hospital having grown an inch and gained a pound.

Of course, after being home for 5 minutes, she figured out how to rip the tube out. Hold your horses, Peanut, we still have to work on the bottle feeding! We need to take small, slow steps! Hopefully, being home will help ease the process, since we can follow Wilhelmina's hunger schedule. Wilhelmina already said "Please keep up the pizza parties, mom and dad, that's my favorite".

Wilhelmina said she would have left the hospital earlier, but she really wanted to party with Ryan Seacrest and Camila Cabello on Friday. And wait for some good weather. But she's ready to wear all the cute onsies from the shower that were not warm enough for hospital temperatures, so she gave the OK to leave.

Now comes the real challenge of keeping this really cute chick happy for the rest of her life. She made it clear this past month that everything happens on her schedule. Even the doctors knew that!

As we move into the next phase, we're keeping all her buddies from the NICU in our thoughts and prayers.  Please do the same. Many many things can go wrong in the earliest part of life, and we are incredibly grateful to have been so close to the best children's hospital in the world. Thank you for all your thoughts, prayers, love and support during this trying time. Keep tuned in, we will continue to update on Wilhelmina's progress.

7/9/2018

Wilhelmina is one month old! Do you believe it? Partying and styling with a new bow on her big day. Too cute.
She is keeping up the hard work on eating by mouth. Over the weekend she was limited to a ten minute all-you-can-eat buffet, and was like "Look at my great latch, mom and dad! Let me eat more!" This week we will see when she's ready to safely eat more.
Wilhelmina's back on a normal weight trajectory and hit 9.2 lbs. She said "Am I too big for these newborn diapers yet?" 

7/4/2018
A happy 4th of July, indeed! Wilhelmina's moving up in the world... literally. We're out of the NICU and in a shared room (3 floors up).  We watched the Nathan's hot dog eating contest on our personal TV and Wilhelmina was like "How can a person eat 10 lbs of hot dogs, 7 lbs of buns, and a bunch of water in 10 mins??" That's Joey Chestnut for you, Peanut!! Not an average eater, for sure.

7/1/2018      A busy couple of days...
Wilhelmina had her first and second modelling gig in one day. She was recorded for a research project on spontaneous baby movement, in which she whipped out some graceful interpretive dance moves. She was also photographed for updated ECMO educational materials. She said "Dad, make sure my hair looks good! Mom made it all crazy..."
Wilhelmina is working on eating by mouth from a bottle. At feeding time, she tries bottle feeding first, and then when 20 minutes pass or when she gets tired, she gets the rest through the tube. She said "Why do I have to work so hard to eat, mom? I used to be able to sleep and eat at the same time!"
Weaning off the sedation is hard sometimes, but fortunately the nurses and doctors have a good protocol to keep Wilhelmina from getting too uncomfortable and upset. Every day she seems more alert and learns something new. She's been showing off her sweet pacifier skills to all the doctors and nurses that stop by to check her out.

6/26/2018
Big news! Wilhelmina is officially off the ventilator! She was hoarse the first time she cried, but has warmed up since then. She still gives the side-eye as a first response to suspicious behavior rather than crying. She also is off all IV lines and is getting her nutrients through her feeding tube. She said "Why do you eat so many falafel sandwiches, mom?" It's hard to resist when Franklin's Table is so close!
She's getting lots of dad-cuddles when mom pumps, and she has already made a small mess on dad's shirt... eating can be hard work!
The last bit of excitement is that she can wear some of her outfits now! 
Though this is great news, we do not have an estimate for when she can come home. She's still on sedation, extra oxygen, and eating with a feeding tube . Getting off all those things takes lots of baby steps.
Thanks for all the positive energy!

6/22/2018
Wilhelmina is able to eat small amounts of breast milk through a feeding tube. She said "What is that bitter taste, mom?"All the vegetables! Gotta get those vitamins...
Wilhelmina is under less sedation so is more awake and alert. She likes to grip onto fingers and press with her feet like she's driving an airplane. She keeps giving everyone the side-eye when they mess with her.
Thanks for all your good thoughts and prayers.

6/21/2018
Wilhelmina had a big day yesterday! She got dressed in a monster hospital gown and a nice fuzzy swaddle and went out with her nurses on a tour of the hospital to get two tests. Then in the evening, she got held by mom for the first time! She got super comfy quickly and was like, "Dad, read me 'Things That Go' since I was on the go today!"

6/19/2018
Wilhelmina continues to progress. The doctors say that she's the one dictating the pace now! The medical team takes small steps to reduce  the support structures (one by one) and allow her do more and more of the work on her own, and she indicates whether she can handle it or if she needs to pause and take a break.
Wilhelmina is getting antsy when she's awake, and sometimes grabs at her lines. Leave that to the doctors, Peanut!

6/18/2018
Wilhelmina is officially off the ECMO and totally stable! She's still resting to make sure she's recovered from the surgery to take her off ECMO, but soon she will be able to take small steps to take her off the ventilator and all the medicines that are still helping her out.
She's got a fresh yellow bow on, and the excitement of the morning was being rotated. She was like "Dad, what the heck, why am I being disturbed?" but then settled down in her new position.

6/16/2018
Wilhelmina is up to about 11lbs! She is just itching to eat for real.
The ECMO process continues to go well.
Wilhelmina can grip our fingers strongly. She must be practicing to be a world-class arm wrestler!
Edited: The weight is mostly fluid, but still...

6/14/2018
Wilhelmina doesn't even need her hat anymore and got a shower and put her hair in punk rock spikes, but kept the bow.
She's making fists and opening her eyes slightly and sucking on the worst pacifier ever saying "When can I eat for real, mom?"
We read her "Some Bugs" and "Little Shark" and she said "What's a bug, dad?" We said she'll find out soon enough!
Thank you for your love, support and good thoughts.

6/13/2018
Wilhelmina is stable on the ECMO process.
Wilhelmina is currently at normal body temperature, on reduced sedation, so she is able to move slightly and respond slightly to touch.
She has a pretty yellow bow that the nurses added to her hat.
She had some mouth care (a little bit of breast milk on her cheek) and was like "Mom, eat more chocolate!"
Thank you for your love, support and good thoughts.