Martin Update - the lost days

Here's a quick rundown of those first crazy days after we moved into the step-down unit with Martin at Egleston when we went on posting hiatus for a while..

Monday (8/8/11) After being told earlier in the day that Martin might be moved out of the Cardiac ICU and into the Cardiac Step-down Unit, we went back to the Ronald McDonald house to start packing our things in anticipation of moving into his hospital room. Instead, we got there and immediately collapsed exhausted into bed for a quick nap and then woke up a few hours later to get the call that he was, in fact, being moved and we could come over to his new room in the CSU! Needless to say, we rushed over from the Ronald McDonald house to Egleston (~0.5 miles) so we could finally hold our little guy. That evening, the head surgeon came in to check on Martin and told us that we might be going home mid-week! Doug and I were speechless and I'm sure we looked like deer in the headlights. Our son had been recovering from open heart surgery for less than a week and they were telling us we might be leaving the safety and security of Egleston sometime in the next 48 hours...

Tuesday (8/9/11) So it begins...

We finally got to start feeding Martin! Every 3 hours! ;) First by bottle for 15-20 minutes and then whatever he didn't finish we'd feed via NG tube. So it was wonderful to know he was getting the full 55ml of calorie enriched breast-milk every 3 hours. The rest of his/our schedule on top of that was pretty intense.

Daddy's turn to hold Martin

• 4am each morning: our nicely dimmed lights are turned fully on and the roller coaster begins with a blood draw either through a vein in arm or a heel stick; he liked neither.
  


• 5am each morning: a fieldtrip to get x-rays where Doug or I got to carry Martin through the 2nd floor and down an elevator to the x-ray room on the first floor. He enjoyed the walk thoroughly, but not so much the x-rays themselves, where we have to hold his arms over his head so they get a clear shot at the heart and lungs to check for fluid. At one point during the week Martin was on 3 different diuretic medications to help "pull that fluid off", but thankfully he's down to just one now and our surgeon even considered discontinuing that one at our follow-up appt. So that's looking better now. :)
  


• 6am first doses of meds, thankfully given via the NG tube so he doesn't even have to be awake. Doug & I were anxious about learning how to insert an NG tube ever since we knew it was a possibility Martin might come home with one. As our nurse was showing us how to administer meds via the NG tube, letting each of us try...the tube gets clogged so we get our first chance to remove and insert a new tube.. Meds continue throughout the day every 4-6 hours.
  

In the Cardiac Stepdown Unit, families are encouraged to be more involved in their child's everyday care and to spend the night in their child's room. We jumped on the chance to be that close to Martin! However, the everyday care part was pretty overwhelming at first. We had visits throughout the day and night from the following folks that first day (that we can recall).

• Social Worker: a fellow Scottie who is helping us naviagate through all the paperwork and find the best care for our son :)
  


• Lactation Consultant: checking in with me on my pumping and teaching us how to make the doctor-prescribed higher calorie breast milk by adding a bit of formula.


• Physical Therapist: teaching us comfort measures as well as exercises to help strengthen Martin's chest once his wounds heal.


• Speech Therapist: checking in on Martin's excellent sucking, swallowing, breathing technique so he can take a bottle well and eventually a breast.


• Respiratory Therapist: checking frequently on Martin's oxygen saturation levels as he began weening him off the oxygen flowing through his nasal cannula.
  


• Nurse Practitioners: checking Martin's overall health; communicating with and scheduling our first appointments at our pediatric cardiologist and pediatrician
  


• Shunt Trainer: one of many healthcare professionals that taught us about Martin's cardiac shunt, how to care for him, what signs to look for if there is an issue with the shunt
  


• Medical Equipment Supply guy: delivered and trained us on how to use the NG feeding pump and pulse-oximeter.
  


• Researchers: two other healthcare professionals performing research studies, came to solicit Martin's help in gathering more data and improving treatment for future HLHS patients. He gladly obliged :)
  


• Pharmacists: delivered 4-5 prescriptions for us to take Martin home with.

I think we remembered to take time to eat on Tuesday and managed a few hours of sleep Tuesday night.


Wednesday (8/10/11) was very similar to Tuesday. Doug and I running on fumes but enjoying the time with Martin; getting to hold him, feed him, change his (healthy!) diapers. :-)

Thursday (8/11/11) was to be our discharge day after they removed Martin's pacing wires and we attended the car seat class. Andi came down to visit and be with Martin while we attended the class. However, Martin had different plans. Right after they removed his pacing wires, his heart rate increased rapidly (SVT). A very scary moment for us, especially because at the time we did not understand what was happening. Andi has described the situation well on her blog at andriasrandomthoughts.blogspot.com. So, we definitely were staying at least one more day for monitoring.

Friday (8/12/11) Martin's heart rate was monitored all day with no signs of SVT and surprisingly, his O2 levels increased and have continued to stay in the 80s (a great range for him).

Saturday (8/13/11) We can go home! By 4pm, we had the discharge papers (only 4 pages with signatures!), all wires/lines removed, bags packed, 3 cases of frozen breast milk insulated for the ride, and our "big" car (Doug's Prius) packed to the brim. The drive was a bit longer than the hour we'd anticipated, but he did great and only started to cry just as we turned onto our street. We were home! We'd been telling ourselves we just hoped to be home by September and here we were two crazy weeks after being born! Way to go little guy! Keep being strong :)

Home again, home again.. :D

Martin Update - Stardate: Thursday, 8-18-11

At long last, we are boldly going where billions have gone before..parenthood.

Sorry for the long delay in updates, but since we became Martin's primary caretakers that fateful Monday evening at Egleston, we've been thrown into a space-time warp of some form. Suddenly, simple things like bathroom breaks and blog posts, that should take just a few minutes, seem to take several Earth-weeks to get to..

Anyway, despite a few setbacks, spitups and a sleep-defying schedule we are VERY happy to say that Martin is home and, on the whole, doing Great!

He just completed his first full 55ml bottle feed today which means there was nothing left over for mom and dad to feed through the NG tube. Inherent risks and visceral dislike aside; the prepping, administering, and cleaning of the NG pump assembly really eats into the precious rest we get between 3 hour feeding and pumping cycles, so I can't overstate how excited we were to see him enjoy his first whole bottle by mouth! Once he can eat exclusively by bottle for a full 24 hour period, we can get rid of the NG tube! The nurses at Egleston estimated that could take a month or more. Our surgeon, after seeing him this past Monday, said it might only be 2-3 weeks, "once he hits his stride", but we hope Martin's hungry for an upset. In the words of his irresistibly plucky, 3 year old neighbor from the Egleston step-down unit, Elijah: "Go Martin Go!" :]

We have a bunch of pics and video we want to share and will fill in all the milky details as soon as possible. Thanks so much for all the love and support.

Martin and Morgan juust after this morning's big bottle feed

Martin Update 8/6/11 - Happy 1 week Birthday!

The weekends have a slower pace in the CICU (Cardiac Intensive Care Unit). Rounds are supposed to start around 8am and finish about 10am, however we were not called back until closer to noon. It was hard to wait to see Martin and get an update, but it gave us time to make some posts and check email. Speaking of, thank you to everyone for all of your comments, texts, calls, emails, etc. We love to hear from you!

Martin is making steady progress. Friday night he had several milliliters of breast milk from the bottle, but not enough to meet his feeding goals for the day so they put in an NG tube (nasogastric tube - a small tube through his nostril to his stomach that slowly administers sustenance; i.e. breast milk!). The plan for Saturday was to slowly increase the hourly amounts of breast milk towards his goal of 18 ml per hour. Babies with HLHS typically have a hard time with reflux, so they are always checking to see if he is spitting up. As of Saturday night, Martin was handling the increased feeding rate well and keeping everything down which is exactly what we want for him to pack on the calories. Chubby baby legs here we come!

They decided to keep Martin's heart lines in place so they could still administer medicine as needed since his umbilical lines were removed on Friday. It was disappointing that the heart lines have remained because we can't hold him until they are removed. However, they removed his last chest tube which has allowed him to take deeper breaths and keep his oxygen saturation up in healthy ranges (oxygen saturation goal in 80s). Friday night, he had a few readings in the upper 60s when they reduced the percentage of oxygen in his nasal cannula.

When we headed downstairs for lunch in the cafeteria, we walked right into Emily and Daniel in the lobby. :-) After getting a bite to eat, we all headed back upstairs to visit with Martin. We can't resist showing off our son. We can only bring one person in at a time, but Martin woke up and opened his beautiful eyes for separate visits by Uncle D and Aunt Emily. He even showed off his great suckling skills with his pacifier. After spending some time with Martin, we got him back to sleep and went over to the Ronald McDonald house to give Emily and Daniel a quick tour of the place we've been staying for the past week. Daniel enjoyed looking at the features in the kitchen and commented how much he would like this or that in their new home (which they will be closing on in late August if everything goes well).

Saturday evening, Doug and I headed up to the Bayley's for dinner. Andi and the kiddos made it down for dinner too. Greg was working on a surprise HVAC issue that sprung up right as they were leaving their house (hope that it is not too big of an issue and that you can fix it soon). Getting together for a family dinner was amazing! After we finished eating, we headed downstairs and enjoyed watching the kids play. Wyatt was testing out his driving skills on a 3 wheel pedal bike (fishtailing and 180 slide turns!). Only 12 more years until Wyatt's on the road. :-) Look out Jeff Gordon!

Martin had several surprises from Andi & Greg which his cousins helped us open for him. We really appreciate the fun clothes and the monogrammed pillow which is something Andi has gotten for each new niece or nephew in the family :). Take a look:







Thank you so much!







After Andi and the kids went home, we enjoyed some sweet treats and shared pictures and videos of Martin with the Bayleys. It was very comforting to lounge in the living room and just talk. We are definitely getting our needs met at Egleston and Ronald McDonald house but it was refreshing and therapeutic to enjoy some much needed family time. Thank you!

Videos Having Already Been Meant To Be Posted Already!

Here are a few video's from last Sunday night, which we've agreed was one of our better ones so far. Our nurse that night was Brittany, who works with one of Andi's nursing school classmates
(Leah) in the cardiac step-down unit here at Egleston. So Brittany knew we were coming and was just very kind and professional and encouraging; we all had a really great night. These videos were all shot within a 15 minute span and I love the whole series, b/c we got to treat him more like a baby than a patient and he responded just like a baby should :)

Brittany asked us if we wanted to help bathe him which, of course, we jumped all over. Daniel later laughed that it was shrewd of her b/c bath-time is not always happy-time for newborns, but we loved every second of it; cleaning him off, washing his hair, hearing him cry and getting to soothe him; he's a pretty good listener :). This is Brittany holding Martin upright after the sponge bath:

After the exertion of crying through his bath, he completely chilled out and laid down to relax and suckle on his pacifier:

Explanation of Accoutrements: The big white thing on his left arm (his shield-arm!) is there to keep him from scratching himself with the IV port he has on that hand

You can really see in this one how comfortable Brittany was with all the trappings of his treatment and that experience really helped us to be more comfortable ourselves. Here Brittany gets him nice and wrapped up like a Martin-cannoli:

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

It's a boy!

After 14 gloriously grueling hours of labor Martin Zwicker Jones arrived just a few days early this Saturday, July 30th at 8:25 AM weighing in at 6lbs. 9oz. and lying 19" tall (including MASSIVE cone head :) he came into the world with his chin up! After the sunny-side-up (a.k.a. O.P.) delivery he was nice enough to pose for this lovely closeup taken by the Athens Regional NICU nurses:



This is a picture of a picture, may update with some better pictures later. We were able to see him shortly after this was taken when the Athens Regional nurses took us on a "field trip" to visit him in the NICU on the way to Morgan's recovery room. We got to have another good visit with him while the Children's Flight Crew were prepping to load him into the mobile transport pod for the helicopter ride to Egleston.

He was transported from Athens Regional to Egleston that afternoon while Morgan and I stayed to crash and recover from the delivery experience. After a quick stop off at home for a shower, I drove into Decatur to see Martin at Egleston Saturday night. He was sleeping peacefully when I got there:









Meanwhile, Morgan spent the night recovering at Athens Regional with her Mum. After being discharged Sunday morning, they made the trek to Atlanta just in time to see Martin before evening rounds :)