Martin Update - 8/5/11 - TGIF

Martin celebrated his due date today and looked absolutely beautiful for it this morning! We're supposed to leave immediately after sitting in on rounds so the medical team can move on to the next patient, but we couldn't resist taking a quick little shot of him before heading back to Athens for the day. He'd had his first post-surgery bath the night before and was looking so fresh and so clean, clean; also fast asleep, sleep..

The medical team's plan for the day was to wean him off his heart medication, remove several more lines/tubes, and continue to let him rest. The nurses told us that today was a good day to make a quick trip to Athens and take care of a few things (apply for social security number, pick up records from ARMC, track down the breast pump United Healthcare is supposedly sending us, and a few things at the house).

When we called to check in on him Friday afternoon, they had removed his umbilical lines and urinary catheter. With his umbilical lines out, Martin can start eating and the nurse said they would start with a bottle of breast milk! We had thought they were going to start with Pedialyte through an NG tube and not until Saturday at any rate. The goal is for Martin to eat 50ml in 3 hours. As of last night, he had eaten 5ml in an hour. The nurse said that he was doing fine sucking and swallowing but that he just seemed to lose interest in the bottle.

Our son is definitely developing a personality. The day shift nurse described him as a funny little guy. She said he'd be resting peacefully, then when he woke up, he would cry until someone came into view (which isn't long, b/c he's a cutie ;). She said that all it would take is for her to step into his view and he would stop crying and just focus on her with his little eyes. Hmmm…is he going to be spoiled much?! :)

Martin Update - 8/4/11 - aka Thursday

Martin had a good day today. They'd been weaning him off of the ventilator for the past 24 hours or so and he'd been responding well enough to it that they did a trial run turning off the machine to see if he'd start breathing completely on his own..which he did like a champ for two and a half hours before they turned it back on to give him a little respit. After a second similarly effective trial an hour or so later, they removed his ventilator tube at 2:45 pm to let him hold his own breathing.. and boy did he :]

We saw him just 10 minutes after the extubation (tube removal) and he had his eyes wide open and quietly scanning from face to face with no visible signs of breathing trouble :D I know that having it in while under anesthesia sustained his life, but like everything else, it's not without uncomfortable drawbacks. Point being, he was just so relieved to have it out and seems so much more awake and alive without it :)

Once his mouth and nose tube were removed, the pacifier reappeared on his bed and we were able to let him enjoy that again. We were pretty thrilled to see he hadn't forgotten his excellent suckling technique:


Explaination of Accoutrements: The thing across his forehead just passively measures oxygen saturation to the blood vessels around brain thru a sticky strip of paper and the tube in nose just has short little extensions in nostrils that are there to supply oxygen if he comes to need it.

Martin Update - Wed. 8/3/11

It's been a long few days. Martin's first surgery was successfully completed on Tuesday around noon and we were able to see him in the Cardiac Intensive Care Unit (CICU) later that same afternoon. He was on the heart-lung bypass machine for 2-3 hours while our surgeon, Dr. Kirschbaum, and his team altered the anatomy of Martin's heart and major blood vessels to allow his working right ventricle to pump blood throughout his entire body.

When we got to the CICU he was deeply unconscious and pretty puffy-faced but still very recognizable as our son. He also had about 2-3 dozen tubes, wires, catheters, etc. that continue to keep him alive and monitor his status for this surgical recovery stage. It was definitely alot scarier looking than the set of attachments he had when we walked him to the operating room doors early that morning, but once again, after spending just a short while with him and watching the familiar way the amazing nurses here handle him and his life-saving equipment, we've both gotten alot more comfortable that he's the same strong baby we'd gotten to know in the 72 hours before surgery and now we really gain a measure of comfort from the slowly, steadily improving information the equipment is able to collect and report.

The anesthesiologist was keeping him in a 'twilight' state of consciousness in order to spare him some of the pain of surgical recovery, but that's been steadily wearing off for the past day and a half. His heart rhythm has largely been holding steady with just one episode of elevated heart rate that he self-corrected. Through application of great skill and experience the medical staff at Children's have been keeping his blood pressure steady while his body heals and finds it's new modus operandi. Earlier tonight after dinner, when he heard our voices and felt our touch, he began to open his eyes just a little for the first time since surgery. He's also starting to move his arms and feet occasionally, again usually in response to our touch or voice :). So he's had a short while to recover from the initial system shock of the surgery and now his organ systems are all starting to wake back up and see how well they can work with his new heart anatomy and circulation. This is definitely still a scary time, but he's cleared the 12 and 24 hour marks which are supposed to be somewhat critical. One of the doctors even used the words 'great' and 'fantastic' in talking about his recovery progress so far which we're told they don't throw around lightly, so that was definitely one of the bright points in our day :]

He still has several stages of recovery to work through, including weening off the ventilator that's performing some of his breathing at the moment, but he's making encouraging progress with that as well. It's important for us to remember that he's not out of the woods at this point, but we're happy to report he does seem to be recovering well so far and we hope to have even better updates soon :) Thanks for all the love and support.

Baby Pictures!

Here are some pictures that aunt Emily took on our camera at Athens Regional Medical Center this past Saturday morning, the day of Martin's birth. Hope you enjoy as much as we do!

Martin Jones

HLHS

Five months ago, we'd never heard of Hypoplastic Left Heart Syndrome. For anyone who doesn't know anything about HLHS and hasn't already googled yourself over the head with information, here are a couple good introductory sites our pediatric cardiologist, Dr. Sharma, recommended after Martin's initial diagnosis:

This site has a better description of the condition than most:
http://www.choa.org/Child-Health-Glossary/H/HY/Hypoplastic-Left-Heart-Syndrome

This site is good in conjunction with the above site only for the roll-over diagram of the heart that helps visualize all the moving parts. It's easier to picture than read text description of:
http://www.pted.org/?id=hypoplasticleft1