Henry

Huh? Who’s there? They did stuff to my eyes today and I’m grumpy. Go talk to Zachary. But don’t worry about me. I’m fine.

It’s only four days post surgery and look at me now! I was able to get up and cuddle with mommy. I am doing very well. All of my vitals look fantastic, I’m am almost completely off of my sedatives, and they’ve moved me off of the oscillating ventilator to a normal one. I expect to be back to my non-invasive breathing assistance very soon.

I still have a lot of water weight that my body built up during recover so it is hard to tell where I am in my growth but we will know soon enough.

 

 

 

 

Well, ok, not really. It would be pretty tough to make me better. And I’m pretty fast as it is. But I am getting stronger! I don’t really have an update except that they are beginning to ween me off of some of my post surgery medications. The immobilizing drug has worn off and I opened my eyes today and moved my hands and feet a bit. Tomorrow the doctors will begin to ween me off of some of the sedatives. It may take a few days because they don’t want me moving around too much and disrupting the stitches in my belly. I’ll keep everyone updated and I promise to have more photos once I heal up a bit more!

Oh, hello. How are you? Did you know that the large intestine in an average adult measures over 5 feet long? Mine now measures 0 feet. But that’s ok. I can expect a a complete recovery and fairly normal life. Mommy and daddy will be learning more about what to expect long term over the next few days and weeks.

My procedure yesterday included the surgeon examining the rest of my intestine to ensure there were no signs of additional necrotizing enterocolitis and then closing me up. Thankfully the team saw nothing of concern and was able to complete the procedure. This is a giant step toward moving me out of critical condition.

I have one final procedure to close up a stoma that the doctor created to help me heal. This will happen when I’m bigger. The doctor suggested he’d like me to weigh around five pounds for this operation. This is a relatively small procedure compared to the two I’ve already have and the risks should be correspondingly small.

I am very thankful to the wonderful doctors at MGH including Dr. Doody (hehehe), Dr. Larue, Dr. Darci, Dr. Bates, and Dr. Horowitz. There are way too many great nurses I have to thank and would like to say a special thank you to Alison, Tammy, Tasha, and Amy.

No procedure to close me up today. Just a lot of rest. The doctors and nurses say I continue to show signs of improvement and even rolled me over today. My silo was contacted to simulate the pressure that will be created when I’m closed and I showed no negative reaction. This is good. The doctor said he’d like to close me up tomorrow. This was a more definitive statement than yesterday’s and I really believe it will happen tomorrow.

So, what happened today? Let me see… hmmm… well, actually, nothing happened. And that’s great! I was left to rest and recover over the past forty eight hours and my body is reacting well to the surgery and treatments. My temperature, heart rate, and blood pressure are all stable and at acceptable levels. I am off post surgery blood pressure medicine and my breathing tube settings are pretty close to the minimum. I have displayed no signs of regression at all!

My recovery has gone so well so far that there are tentative plans to remove my silo and close me up tomorrow. The doctors originally said it might take a week before I was ready for that procedure. Another doctor said I am in better shape than any other baby recovering from this surgery that she has ever seen. This does not mean I’m out of the woods yet but it has given mommy and daddy great hope!

Today the emotional roller coaster is on its way back up. It’s been a dizzying ride for the past four days and the wonderful nurses and doctors at MGH have helped ensure a path back to the top.

Thank you all for your kind words and prayers. It means a lot to me to know so many people love me.

 

I definitely got knocked down Saturday night. When mommy and daddy left me I had stage one necrotizing enterocolitis (NEC). This means the condition is suspected based on symptoms but unconfirmed. Treatment is usually noninvasive and includes antibiotics and several days of IV based nutrition (no food orally).

As the night progressed so did my condition. Mommy and daddy got several phone calls throughout the night to authorize progressively invasive tests. This culminated with an exploratory laparoscopy on Sunday morning. By this point I had moved to stage three, confirmed NEC, and likely had holes in my intestine that would require intervention to avoid spreading bacteria throughout my body.

I had my entire large intestine removed and about 10% of my small intestine removed. The doctors said I did wonderfully throughout the surgery and was strong. They are hopeful that I will respond well to the treatment and can proceed on to the next steps.

I have a couple more surgeries in my future. If you look at the photo you can see a plastic bag hanging down into me. This is a ‘silo’. My abdomen is still open to allow my remaining intestine to heal, which sometimes requires a bit of swelling. Once the swelling goes down I will be closed back up.

I still have a few days of monitoring and recovery before I am no longer in critical condition but I am on my way to getting back up again. And there is no reason to think I can’t be as healthy and happy as Morgan.

Get it? “Bear” with me! Because I have a bear on my band-aid. No? Ugh. Mommy tried to tell me that nobody would laugh at daddy’s jokes.

Grandma Moore came to see me tonight and I saw her holding Zachary. While daddy was getting me ready to be held by mommy the nurse noticed some concerning symptoms. She called a doctor in to have a closer look at me and the doctor ordered a couple of x-rays. The good news is that the symptoms and x-rays showed nothing definitive. The bad news is that the doctors think there is a chance I have an early stage of “neck ties on Snuffleupagus” (editors note: ‘necrotizing enterocolitis’).

The doctors are confident that I will get better and are treating it aggressively. I already had one IV in for antibiotics (that’s what the band-aid is for), and now I have had a breathing tube reinserted, had an extra IV put in for sustenance , and will not be be fed solid(ish) food for at least 72 hours. The doctors will have a better idea of what is going on in the next 24 hours.

If you do lookup my condition please pay no mind to prognosis information as it varies greatly from site to site. Just remember that there is no better place in the country for me to be right now and there is every reason to think I will make a full and speedy recovery.

You like me, you really like me! And my mommy and daddy tell me that this isn’t even all of the cards I’ve received. They kept a few at home for them to enjoy.

Thank you everybody for your kind words and well wishes.

 

 

 

 

 

 

… unless you’re giving blood. Which I did yesterday.

First the kindly nurse gave me a delectable sugar water cocktail. Then she poked my leg with a gigantic needle and squeezed my leg. I was so tough. Mommy almost fainted when she saw the needle go in but I just kept drooling on my chin and fingers. The nurse put a tiny drop of blood on several strips of test paper and said these were for standard tests. Barely two weeks old and I’m already participating in standardized testing. Mommy is proud.

Today I made up for yesterday’s blood loss by gaining 50 grams of pure muscle. Or baby fat. Whatever. Zachary only gained 10. Who’s the big brother now?!

He still is? Oh. Poop.