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ONE YEAR OLD!

November 1, 2017.  HAPPY 1st BIRTHDAY, JACK!  What a difference a year makes.

1 year ago today we entered Brigham & Women’s Hospital for a 9am induction.  For months of my pregnancy, we were ”prepped” on what my delivery “schedule” might entail due to our baby’s known heart defect.  But we really didn’t know.  We really didn’t know how it would feel once rubber hit the road.  We really didn’t know that we would torture ourselves for 12 hours after being induced over what the next day and month would look like.  …As if we hadn’t done that enough already.  It was all we could think about since we received the news at 20 weeks pregnant, and now we were at t minus a few hours of go-time.  I had to give birth to this baby, send my baby away, have my baby undergo major surgeries, and then wait and wait to see how each day of the recovery went.  There were so many if/then statements highlighted on our prepped delivery “schedule.”  It seemed like it was every day of the second half of my pregnancy that Mike and I discussed our various conversations with the cardiologists to make us feel better that we knew and were “prepared” for all scenarios.  We were supposed to be so happy and excited, but we ranged in emotions and were generally terrified.

And when we found out on the evening of November 1, 2016 that our baby was ready to enter the world, we really didn’t know that being escorted into an operating room and waiting for 20 doctors and nurses to enter before starting to push would be both remarkable and chilling.  All 20 just watching and waiting, sending guidance to each other, pointing around the room, and readily positioned with each of their “tools” at arm’s length. Every person in that room knew their role, and the order that their duties had to occur.  One nurse just standing next to the phone on the wall, waiting for a ring and to make her calls over to Boston Children’s.  She intimidated me the most.  What kind of phone calls were we expecting here?! Over the months prior, we often felt reality checks…together, alone, at work, in the car, in the middle of the night. But at that moment it was hitting me like a ton of bricks.  It would have been impossible to actually be prepared for the emotional roller coaster we were hopping on for 14 days at Boston Children’s Hospital.  We didn’t even know if this little lovebug inside of me was a boy or a girl, let alone whether or not he or she was a lion-hearted tenacious nugget of pure strength.  We prayed for months that this baby would be ready to put up the fight of his/her life just minutes, hours, and days after he/she was born.  We really didn’t know how it would feel to actually lay eyes on our very own baby.  We had heard that this baby would instantly become the love of our lives.  …That there is no greater feeling than seeing your child for the very first time, and no greater love than that of you for your child.  We really didn’t know how it would feel to see that our precious child, who we did in fact instantly fall in love with, that we had prayed every day for was born blue and turning bluer by the second.  In that moment, we did know from our collection of if/then statements that this would be a very time-sensitive situation, and that it meant our baby would need their first operation immediately.  But we really didn’t know just how much it would yank on our hearts to see this boy taken from us after a mere 10 seconds, to the corner of the large operating room.  That corner filled with a number of those 20 doctors and nurses waiting to track his stats, force tubes down his throat so he could breathe, and hook him up to unknown machines.  And I really didn’t know that I would lay there waiting to hear my baby scream and cry because to me that meant he was “okay” and well, alive.  I relied on the expressions, tones, and body languages of doctors and nurses, and it was petrifying.  …All that before transporting him to the next round of doctors at Boston Children’s that would perform their operation to ensure he could get just enough oxygenated blood circulating until his big open heart surgery a couple of days later.  I really didn’t know that I would turn selfish in those moments.  I wanted my quality skin-to-skin time.  And I wanted pictures, damn it.  I wanted pictures of my just-born infant on my chest, nuzzled into my neck.  I wanted pictures of raw emotion at the birth of our first child.  I wanted all my tears to be made of joy rather than joyful tears being overtaken by saddened and panicked ones.  I wanted pictures of Mommy and Daddy gushing over their baby. I wanted to put on a fancy maternity robe, touch up my mascara, and take those priceless first pictures with my son. Hell, I wanted a photographer in there, and I wanted all family members in there getting individual pictures with this treasure of a human.  I just gave birth to a boy that I loved more than anything, and I really didn’t know that I would find myself laying on the other side of the room feeling completely helpless.  My eyes followed Mike as he eavesdropped and peeked around doctor huddles, trying to get another glimpse of our boy.  I can tell you that I read the body language and lips of every person in that room. Despite my thoughts of helplessness, I was focused, concerned, sensitive, protective, answer-seeking, multi-tasking…and I said “this is motherhood.”   I really didn’t know that a year later I would still be able to see the image of that room I gave birth in, and every person in it, and every action that took place.  I feel like I got a full dosage of motherhood in the first 30 minutes of my son’s life. And I really didn’t know that that maximum dosage was going to come again and again and again for the next two weeks.  The sounds of hard-at-work nurses and doctors directing each other, and calling for an on-call doctor at Boston Children’s to prepare their operating room for Jack’s first procedure sounded like absolute panic to me.  His big open heart surgery wasn’t even going to occur for a few days, and THAT is what I was “prepping” for all this time.  It felt like I was emotionally and physically exhausted and really wasn’t prepared for this motherhood at all.  So then we really didn’t know what was going to happen when Jack had to be carried off to his very first and very important “appointment.”  …That his devoted resilient Dad would find room for his hand on the miniature hospital bed to help the nurses and doctors wheel him over to Boston Children’s.  “Er, I’m going with him, I have my cell phone.”  …And that his mess of a Mom would be forced to recover for a few hours before seeing her baby again.  I really didn’t know that I wouldn’t be able to remember what he looked like just hours after he was born.  I really didn’t know that my nurse and my Mom would be wheeling me back to my hospital room where my Dad and my brothers were, and that I wouldn’t be able to introduce them to my baby.  They waited all day at the hospital for their grandson/nephew to be born, and all I could think is “why didn’t I know that they wouldn’t be able to meet him today?” I really didn’t know that I was going to be elated to see them and then weep in the next moment at the sight of their stress and worry and say: “He is supposed to be here with us now.  We should be taking pictures.”  

 I really didn’t know that while my newborn was undergoing open heart surgery for 8 hours, we’d be sitting in a waiting room next to moms and dads waiting for their teenagers to get out of surgeries repairing broken wrists and torn ACLs.  I really didn’t know that our updates every 90 minutes would be as brief and non-descriptive as “the first incision was made,” and “he is hooked up to the bypass machine.”  I really didn’t know that throughout his stay in the CICU, we would be comparing our baby to neighboring babies saying “that baby is a couple days ahead of Jack, Jack should be out of here to the step-down unit in a few days if he progresses like that baby.”  I really didn’t know that I would wake up in the middle of the night in our room at the Yawkey Family Inn bawling, needing to call the nurse at Jack’s bedside.  I really didn’t know that for the first two weeks of his life, my baby would be “awake” for a combined few hours.  The tiny body of our first-born under ‘paralytics,’ with breathing and feeding tubes…covered in cords and plugs and tubes and tapes and wires for two weeks.  I really didn’t know that this whole “experience” we endured would continue to hit me and bring me to tears throughout his first year, and probably forever…together, alone, at work, in the car, in the middle of the night. There has always been special precaution taken by Jack’s pediatrician and by his cardiologists even when he has a simple “cold,” and it brings us back to our moments at Boston Children’s. When Jack was three months old, our pediatrician sent us to the hospital from his normal check-up.  She said his spleen was enlarged and she wanted x-rays. Because if both his spleen and liver were enlarged, then his heart may not be pumping blood the proper way.  There we were in the hospital again, waiting and waiting, but he was fine.  We are thankful for the thorough nature of our doctors, but naturally, we don’t always want to be reminded that our son has congenital heart disease and that he is a special case, and though we have every right to believe his heart is perfect…that we don’t exactly know what may come in the future.

 …Now I really do know some stuff!  Essentially that we live and learn and adjust and persevere…with the help of exceptional support systems if we’re lucky.  I know now that sometimes obstacles occur in the lives of those that can handle them. And Jack has handled this like. a.  BOSS.  And whatever comes at him in the future, he will continue to be a boss.  I really do know that it’s best to be kind because everyone is fighting a battle that we may or may not know about.  I know that hospitals are frightening and upsetting, but also humbling places.  I know that empathy is so natural, and that we are damn lucky that we are not in the shoes of many others.  And we should think about that from time to time.  I remember thinking daily inside Boston Children’s that we were the lucky ones, and I can still remember the way my heart ached for so many children and families we saw in passing.  I know that though it may sometimes bring a slew of unknowns, anxiety, heartbreak, and undesired emotions, the joys and love found in every day of parenthood far surpass the tearful and scary moments and make it all worthwhile.  I know that Mike and I are stronger, and I think, a more “prepped” Mom & Dad for all that we went through.  I know that genius and life-saving surgeons, doctors, and nurses have our back and will be with us forever and help guide us through anything that comes Jack’s way.  I know that Jack’s tenacity, might, and fearlessness were instilled immediately and will live with him forever.  I’ve seen that because of Jack’s preferred lifestyle (action-packed/full throttle/valiant/confident), he meets many floors and walls and objects with his noggin and various parts of his body.  It seems there is very little that bothers him, and if it does, it’s for no longer than a few seconds…he is super strong, he overcomes, he is always happy (unless he’s very very tired), and he truly has a love for each day.  He wakes up chatting to himself in his crib and patiently waits for us to enter his room…and we’re greeted with the biggest smile as he stands up stomping his feet.  I know that Jack tackles things head-on, he dives right in.  (He tries to crawl into the ocean.  He speed climbs up full sets of stairs in 8 seconds flat. He takes the most direct route everywhere he goes, climbing over objects/people/animals.)  He’s a force to be reckoned with, he takes the path of most resistance…because he knows he can.  I know this sheer determination will be another one of his tremendous assets throughout life.  I know that if his first year is any inclination of his future, this boy will not be held back by anything.  He will overcome any hurdle that faces him, especially if it has to do with his heart because he has already fought so hard.  He pushes himself until he’s satisfied.  I know that our boy is going to make us happy and proud and amazed for the rest of our lives.  Jack will tell his story and how he scared the poo out of his Mom and Dad.  I know that Boston Children’s Hospital is THE best hospital for pediatric cardiology.  And best of all, I know from the heart surgeon that we are forever indebted to, that performs his gift on hearts the size of walnuts, that Jack’s heart is perfect.

  Thanks for listening, check back again in a year ;)

[whatsupweinzimmers]

More Progress (11/11 post)

Jack’s vacuum pack over his chest wound came off yesterday (11/10), as did his pacing wires.  All he has left is his feeding tube in his nose, and one IV in his arm in case he needs any medication.  It’s so easy to scoop him right up now!  His chest wound and stitches look really good, the stitch-up procedure was very well done.

Jack had an echocardiogram this morning in which he had to be sedated so he would stay still.  They just gave him some sleep medicine through his IV.  As a result, he has been very sleepy all day (although we can wake him to feed him with no problems).  The results of the echocardiogram, essentially an ultrasound of the chest and heart, came back really favorable.  We were told once again that “it was a really good repair” done on Jack’s heart.  This post-surgery echocardiogram was one of the last things we had to do before being discharged.  Our cardiologist thinks we’ll be discharged on Tuesday!  Fingers crossed!  This is much earlier than we expected, and I think we owe that to Jack’s strength and stamina!

We have been able to do “normal baby stuff” now that we’re in the step-down/ critical care unit.  In the CICU, it was instead all about his recovery from the heart surgery.  (Understandably so.)  Jack is now taking bottles of breast milk like a champ.  This means he doesn’t really need to be fed the breast milk through his feeding tube.  He latched on to the bottle almost immediately after we introduced it.  Now that he can take a full breast milk feeding through the bottle, we will try nursing tomorrow morning.  ...And his feeding tube should be able to come out soon since he proved he can be fed through other means.  He’s a normal little newborn...his one mechanical issue with his heart has been fixed, and he has basically recovered from that surgery.

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Out of the CICU! (11/9 post)

A quick update...

Yesterday morning (Tuesday 11/8) we arrived at the hospital to find out that Jack had just been moved to the step-down unit across the hall.  He is no longer in the Cardiac ICU...but in the cardiac “critical care” wing.  He only has one IV line left in him, his vacuum pack on his chest wound, and a feeding tube through his nose.  That’s it!  He’s a little champ!  We have our own big and spacious room in this wing, and the nurses come in very rarely.  So, we have been busy new parents!  We’re taking this time to learn a lot about Jack and caring for newborns.  We can also scoop him up and hold him whenever we want.  We just have to be careful of the few cords he has left as well as where we’re scooping him, and how we’re holding him.  We don’t want to do anything under the arms as this would hurt him and disrupt his chest wound.

Yesterday Jack was very congested because he had a lot of fluid/flem/mucus built up from the surgery, medications, and breathing tube.  The poor guy was very wheezy.  We were able to sit him up a few times, pat on his back for a while, and then rock him back down.  This seemed to offer him a lot of relief.  He would cough and sneeze and cry...all aided in breaking up the fluid.  He is much better today.

The nurses are still using the feeding tube to feed Jack my breast milk, but we’re also now testing out a bottle to do so.  We will soon get to nursing.  Once he proves that he can feed with the bottle or nurse, they will take the feeding tube out.  He did very well with the bottle training today, and we got quite a bit of milk in him.  He has loved the pacifier ever since we introduced it, so I think taking a bottle will get easier and easier for him.

His vacuum pack on his chest should be coming off tomorrow.  Once that is off, he will get an EKG as well as another echocardiogram within a few days.

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Day-By-Day Recovery (11/8 post)

Later tonight Jack will be one week old!  I said before that back in July we had endured the longest week of our lives...from the time we found out about the heart defect until the day we got to actually meet with the cardiologist.  However, this past week may top that!  What a roller coaster!

But wow, what a day yesterday was!  We couldn't be more amazed with Jack and his progress.  What a strong little trooper!!  Heading to the hospital on Monday morning, we were filled with stress and emotion as we got a slight impression on Sunday from the nurses that perhaps Jack should have been progressing and awaking quicker than he was.  They were talking about doing head ultrasounds, they were nervous that he wasn't moving his legs enough, that he wasn’t reacting quite like they wanted him to, etc. etc.  Seeing him ourselves throughout the day on Sunday, we thought he was doing great.  We were happy with his movements and reactions including squirms and eye opening.  But then when we got home we (probably over) analyzed some of the conversations we had with the nurses.  The thing is- we ask soooo many questions throughout the days, and we receive so much information that sometimes it's hard to keep things straight.  Sometimes the nurses will tell us things that will need to happen IF Jack doesn't do something within a specific timeframe.  It's just all a little hard to keep track of...and Mike ended up telling the nurse that he doesn't want to necessarily know all of the future IFs as we're taking this all day-by-day.

Anyway, Monday was a great day.  And we hope to have more of those from here on out.  Jack showed continuous signs of fully awaking overnight from Sunday to Monday, and then continuing into Monday morning.  He was reacting perfectly, his legs were moving and pushing a ton, and boy is he strong with his grip, kicks, and punches!  We think he might just be lazy while waking up...like his Dad!  The doctors and nurses were very happy with him, and knew it was time to start hitting some milestones.  First Jack got his chest tubes out, and later on his breathing tube came out.  They put him on a small dose of fentanyl because these procedures can be pretty irritating.  This was again going to make him pretty sleepy.  Per usual, Jack handled everything like a boss.  He thrived on his own.  Even though he was sleepy, he moved around like crazy for us throughout the day.  He was opening his eyes and reacting to everything.  I just stared at him all day and fell in love with every single expression he made.

Once the breathing tube came out we were actually able to hold him!!  Mike had never held him before.  I held him for 15 seconds immediately after delivery.  No breathing tube also means that Jack can make noises!  It was SO good to hear him cry and whine and cough and sneeze.  It's all just so adorable.  Especially because it's raspy noises right now since his throat is pretty sore from having a breathing tube in for so long.  Jack looks like a whole new boy without a breathing tube in his mouth and a bunch of tape across his face!

Jack took a pacifier very well, and we also actually got to feed him breast milk through a bottle later last night!  He had previously only been receiving the breast milk through his feeding tube.  The feeding tube will stay in for a little while because Jack still has to learn how to nurse and take a bottle.  Lastly, Jack is having plenty of bowel movements!  We got our fair share of diaper changing in today.  All we thought was: okay this is healthy!

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Waking Up (11/6 post)

Jack went off the paralytics last night but was still on morphine.  They stopped the morphine this morning.  However, he had a good dose of fetanyl yesterday when they stitched his chest back up.  We have to assume some of this is still in his system, which will make him sleepy.  Either way, we were very anxious all day for Jack to make great strides in waking up...opening his eyes, reacting to us, squirming around, etc.  We learned that this happens slowly, but it’s so hard to be patient.  From the time we saw him this morning, he was certainly moving a little, reacting a little, and opening his eyes just slightly.  We obviously hadn’t seen any of this since he had his surgery.  By evening, Jack was squirming around quite a bit, gripping our fingers, reacting to our touch, and had his eyes almost wide open.  He was also taken off the dopamine.  The nurses were very excited about his progress.  We started to hold a pacifier in his mouth because he had been sucking on the breathing tube that’s in his mouth.  He enjoyed the pacifier, but then he started to gag which made us very nervous.  (The nurses were not concerned, but I certainly freaked out.)  Jack also had a few bouts of hiccups...just like he had while in Mama’s belly!  We also noticed that he was producing his own little tears.

We were also told in the morning that once Jack showed good signs of waking up, they would start to wean his breathing machine.  He was getting 14 breaths per minute from the machine, and doing the rest on his own.  By 4pm they had Jack “sprinting” because he made so much progress in waking up.  So, he was doing all of the breathing on his own, but the machine just added some pressure for him.  The breathing tube will likely be removed tomorrow.  This is because they were feeding him (now 4ml every hour) through his feeding tube, and they don’t want food to be in his stomach when they remove the breathing tube in case it gives him the urge to puke, and choke on that puke.

It has been very difficult to take Jack’s recovery day by day.  I often have to step back and realize I’m being a little impatient.  Jack has been through a lot in his 5 days, and it’s going to take time for him to fully recover.  We’re very thankful for his 1:1 24/7 nursing care.  The nurses are such a comfort for us.  We ask any question we need to ask whether we’re there with them in person or calling them at all hours of the night. 

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Quick Update (11/5 post)

The procedure to stitch Jack's chest back up went very well. The surgeon is very happy with it. He left a soft and spongey vacuum strip covering the wound so that any fluids can be stripped out. This will probably come off in 5 or so days. It's very simple to remove it. All of Jack's stats were favorable after the procedure. The little guy seems to react well to everything we throw at him! (3 surgeries in 3.5 days!) The next step was to get him off the paralytics/ sedatives. The nurse did this around 5:30pm. Yay! He is still on a little morphine for pain management purposes so he will still be sleepy for a while. We're hoping he'll be moving around a little on his own tomorrow. ...And we really can't wait for him to open his eyes! Up next is getting Jack off the breathing tube. The nurse seems to think that all of the next steps will be fairly "easy" for Jack as he has responded very well to everything. He doesn't seem to need all of the breaths that the machine can give him...he can do a lot on his own. They also put a feeding tube in through Jack's nose...they'll start feeding him breast milk through this tonight!

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Post Arterial Switch Surgery (11/5 post)

Friday 11/4 was a busy day. This was the first day after Jack’s open heart surgery.  We were discharged from the maternity ward at Brigham & Women’s, and went back to our room at the Yawkey Family Inn. Before we left B&W, we got a phone call from the nurse in the CICU about the procedure to stitch Jack’s chest back up.  They wanted to do it that day, a little less than 24 hours after the open heart surgery. This was a good sign, testament to how well Jack was recovering.  The surgeon likes to leave the chest open (covered with a plastic tape) after an open heart surgery, because so many fluids need to drain.  They don’t want blood or fluids backing up because it will act like a weight on his lungs; if they still have the chest open it’s easy for them to drain any fluids.  We headed over to the CICU because we wanted to get a quick visit in to see Jack before we went back to the family housing and unpacked.  He was still just as cute as ever, but very ‘hooked up,’ and of course has plastic tape (not clear/ see-through, thank God) covering an opening in his chest.  He’s also on ‘paralytics’ (hate that term), and is still on a breathing tube, so he’s not moving or reacting to us as he had before the surgery.  This is all normal procedure.  We can see his chest moving up and down, and recognize his heartbeat…and that’s all we need!  We did know all of this going in because we saw him on Thursday night in the CICU after he returned from surgery, and after we spoke with the surgeon.  From hearing the surgeon’s wonderful news that night, just knowing Jack is okay makes seeing him in this state much easier.  Once his chest is stitched back up, they will first wean him off the paralytics, and then the breathing tube.  Everything is day-by-day, and that’s how it’s supposed to be after such a major surgery.  We must have been told 100 times that no one will rush anything.

I called Jack’s nurse a little while after returning back to our room at Yawkey on Friday.  She told me that the surgeon is now going to wait to do the stitching procedure.  This was because earlier in the afternoon, when Jack was between 12 and 18 hours post-op, his blood pressure was bouncing around a little.  This is completely normal for 12-18 hours post-op, it’s expected. By the time I was talking to the nurse, they had controlled it, and he was doing just fine again.  However, they decided that maybe he’s not quite ready for the stitching.  We were fine with this as the nurse even said that she was surprised they wanted to do it so early.  We were also told earlier by the doctors that the timing of the stitching is not an issue. If they decide to wait, it’s not a big deal, and there is no harm.  Again, they’re not rushing anything, and they just need to make sure Jack is ready.

We went back to see Jack around 4 on Friday and spent a while in his room just talking with his nurse. She informed us that Jack has been peeing little by little.  This is a good sign, as it means he’s clearly disposing of some of the fluids.  This is something they want to see him do.  Our cardiologist came in to talk to us…he wants to be able to see us every day.  He assured us Jack is fine, and even if the stitching is done on Monday, he’s still fine.  He was also happy with Thursday’s surgery.  The surgeon stopped in again as well.  He seemed pretty certain that he will be stitching him late Saturday morning.  I spoke with Jack’s nurse again before heading to bed on Friday night (and then again at 3am), and he was doing well…he’s been doing everything they want him to do.  

We came to the CICU around 9am today (11/5) to check in on Jack, and to see him before the stitching. They will be completing the procedure right in his CICU room, after transforming it into a sterile environment.  Another doctor, Dr. Hokinson will be completing the procedure as our surgeon was in the OR for something else.  Dr. Hokinson came in to give us a brief overview around 11:20, and then was going to get everything started.  The procedure should only take about an hour, and then the nurse will need another hour to get Jack all comfy cozy again.

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Surgery Day (11/3 post)

Mike and I spent some time with Jack during the morning of his surgery day, Thursday 11/3.  We happened to be there while the doctors were making their morning rounds getting an update on all of the patients one by one. He has been doing so well.  They were weaning him off the prostaglandins which were provided through an IV as one method to keep his oxygenated blood circulating.  We then went back to visit him just before he was wheeled off by some of the doctors on his surgery team.  They left the ICU just after 1pm.  We kissed him on his little forehead and followed the team down to the floor of operating rooms.  We got another kiss in, the team went one way, and the nurse took us the other way to head to the waiting room.  We plan on being in the waiting room for a little while, and then venturing here and there to distract ourselves.  We will get periodic updates from a nurse who speaks with a liaison in the OR.  If they don’t find us in the waiting room, they’ll call one of our cell phones to let us know the status.

…The first incision is the first status they give us.  This was done at 2:45pm. The surgeon came out at about 3:15 to say hi to us again (we met yesterday), and to let us know that he’s about to get started.  He seemed very calm, cool, and collected.  He said that everything has gone well so far, and that the anatomy looks favorable.  We got another update at 4pm stating that they got Jack on the bypass machine, and that he’s doing well/ everything is going well. They’re now able to start the arterial switch process.

We got another update at about 5:35.  Everything is going well, no issues, and obviously Jack is still on the bypass. They are about halfway completed with the arterial switch.

We got an update at 6:50. They are done with the arterial switch surgery, and Jack is off the bypass machine!  They are finishing up in the OR – warming Jack up, monitoring how everything behaves, and making sure everything transitions smoothly.  Jack and the team should be back up to the Cardiac ICU by 8pm.  We will meet them up there to receive the report from Dr. Salazar, Jack’s surgeon.  And then we can visit with our Jack!!  We ended up spending all of this time in the waiting room because we couldn’t bear to be too far away.

Dr. Salazar came to visit us at about 8:20.  Jack is finally back up to the CICU where we are waiting in the family waiting room.  To quote Dr. Salazar: “His heart is perfect now. I don’t say that often, and I don’t say it unless it’s true.  Let that sink in.”  The arterial switch is complete, and the hole is closed up.  He said that he doesn’t like to say things unless he is confident because he is superstitious and doesn’t like to jinx anything.  He says he will still not let his guard down as the next few days of recovery will be crucial.  …But he said we can let our guards down.  Dr. Salazar is completely confident that Jack’s heart is normal, healthy, and perfect.  He’s fixed!!  And we’re the happiest people alive!

We are waiting for the doctors to give us the go ahead to come in and visit with Jack.  He will appear in pretty rough shape for a couple days. We’ll give our little boss-man a pass though.  Dr. Salazar says that he usually likes to keep the incision open for a couple of days because the baby will be so swollen.  He actually puts plastic over the chest.

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Jack’s First Day (11/3 post)

Between Mike, me, my parents, and Mike's parents we made quite a few visits to the CICU yesterday (11/2) to visit our Jack.  He is doing so well up there, and just seems so strong and peaceful.  He's a regular ol' sweet and little newborn babe...just has one mechanical issue to fix!  At one point when Mike and I visited him later on in the night, he wanted to have a brief crying fit.  His little face got all red and tense, his eyes clenched close, his mouth opened wide, and the poor little bugger couldn't even make a noise because of his breathing tube.  I just want to hear that cry again like when he was first born!  Earlier in the day, he had a very long and thorough echocardiogram prior to Mike and his parents' visit.  Because they needed him to stay still for this, they sedated him a little.  Mike said he wasn't too too active during their visit, just resting.  During my visit with my parents, he was very reactive to our touch...squirming and stretching and throwing fists.  He also kept a firm grip on any finger that came near his left hand.  We all made sure he was hearing our voices as well because it breaks my heart that we aren't next to him nonstop...but we know he's getting a lot of love and care.  We still can't wait to see both of his eyes wide open!  Whenever we're there with him, he's sort of slightly opening them just to give us a tiny little glance at his grayish blue eyes.  His stats are great, and they talked about wanting to take out his breathing tube.  They are in no rush, but they don't seem to think he needs it all that much.  It was more for the beginning when he was working so hard to both breathe and work his troubled heart.  We gave him one of our little hats to keep his head full of dark hair (!) nice and warm, a swaddle blanket, some socks, and a couple of little stuffed animals so he stands right out.  The nurses are taking such great care of him (and us). While we were in the CICU, many members of "Jack's Team" stopped by to talk to us.  One of those was his surgeon, Dr. Salazar.  Another was the pediatric cardiologist we have been seeing, Dr. Rathod.  We were told that the team decided on Friday being the best day for surgery.  We were happy with that choice, as we really didn't want to wait until Monday.  When we got back to our room after this trip to the CICU, I received a phone call from yet another cardiac doctor stating that they want to bump the surgery up to Thursday, which is now today!  This is mainly due to the surgeon's schedule, which can be so fluid.  He has something going on on Friday, so he wouldn't have been able to schedule Jack's surgery until later in the day.  He didn't want to run the risk of having Jack bumped to Monday if he was running late, so they decided Thursday was best.  At first we wondered if this was too soon as Jack will only be about 36 hours old.  We were reassured, and we know to trust the experts!  We hear nothing but good things about Jack's team of doctors, and we're confident that we're in the right place.

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It’s a BOY!  (11/2 post)

IT'S A BOY!!

Jack Jay Weinzimmer

November 1, 2016

10:40pm

7lbs, 11oz

My induction process started at about 9:30am yesterday, 11/1/16. I started on pitocin around 4:30pm. Later on I went from 3cm dilated to fully dilated in 2 hours.  I elected for the epidural around 6:30pm, and it seemed to relieve some pain for a little while, but it just couldn't keep up.  About an hour later, I was told I was 3 cm dilated, and that this would likely be a November 2nd baby.  The nurses saw that I was still very uncomfortable during contractions, and gripping on to anything for dear life.  The contractions became what we now know as full blown labor, and no one would have guessed that because it all happened so fast.  They finally increased my epidural medication, probably thinking I was a big baby.  At about 9:45pm, the OB/GYNs then checked my dilation status only because Pediatrics had just told them that they wanted them to do so every couple of hours.  While checking my status the OB/GYN exclaimed "holy moly, holy moly, holy moly, you are fully dilated."  They got the OB team to come in and have me try a practice push, when they determined ‘okay we need to get you to the OR...no more pushing!’  At this point the epidural increase had fully kicked in.  The OR was necessary because we had about 20 people in there on hand waiting for the baby to be delivered.  They wouldn't have all fit in a normal labor and delivery room.  Pediatrics, NICU nurses, respiratory doctors, cardiologists, my doctors, you name it – they were there.  Typically you'd only be in the OR for a c-section.  They had me push once again just to estimate about how long it would take, and again, they said ‘okay no more pushing.’  They needed to wait until everyone got into the OR that needed to be there.  I then pushed through two contractions (~6 times) and Jack was here!

When the delivery was complete, Mike announced the gender, they allowed me to hold Jack for about 15 seconds, and then they whisked him away to the corner of the room.  (In those 15 seconds, he both peed and spit up on me…but I am very much okay with that.) It was so chaotic and nerve-wracking in the operating room.  All I heard were beeps and alarms, and I was looking around at frantic expressions on the faces of doctors.  In the end, two different doctors came over to speak with us, and they explained everything that was going on.  They reassured us that everything was going to be okay.  Jack had to get a breathing tube put in because his poor little body was trying too hard to both breathe and work his heart.  His oxygen saturation stats were all over the place so he was put on the IV of prostaglandin right away to aid in the circulation of oxygenated blood.  The hole between the left atrium and the right atrium in his heart was almost completely closed so they also decided right away that he needed to go up to the Boston Children's Cardiac ICU (CICU) to get the balloon atrial septostomy.  We knew this was a likely possibility, but I didn’t think it would be so urgent.  One doctor in the room called for the on-call doctor to complete the surgery as soon as possible.  The surgery enlarged this hole in the heart to allow oxygenated blood to flow through the body until he undergoes his open heart surgery.  They entered the body through his groin with a catheter that had a balloon attached to it, and reached the small hole to enlarge it.  Mike went with the whole team of people to the Boston Children’s CICU, and provided us with updates as I was brought back to my room to recover.

The catheter procedure went really well and the oxygen saturation stats drastically improved.  Mike was told that the low stats right after birth are not to be of concern, and that they took care of things quickly enough.  Jack will now be in the cardiac ICU until he gets his arterial switch surgery and then recovers from it.  We’re told that the surgery will take place either Friday or Monday…we’re hoping for Friday as these next few days will be very trying.

After recovering for two hours, two of my nurses wheeled me over to Boston Children’s to see Jack and Mike in the CICU.  I got very emotional as we saw Jack all hooked up in his little hospital bed.  I knew I would, as I did when we simply toured the CICU a couple of weeks ago. He was slightly sedated, still had the breathing tube, was receiving other IVs of medicine, and was getting 1:1 care from a nurse.  He will receive 1:1 care from a nurse for his entire stay in the CICU…we were told it's the best "free" babysitter we'll ever have.  We asked the nurse a lot of questions, and can call her whenever we want.  We will head over there again today to see Jack, and to meet with the cardiologists to discuss all that has taken place and the plan for the next few days.

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The Yawkey Family Inn. A half mile away from Boston Children's Hospital.

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Arriving in Boston (10/27 post)

My Mom and I arrived in Boston yesterday, Wednesday 10/26.  My Mom will be staying with me until Mike gets here on Friday night, 10/28.  Mike had to get a few more days of work in before taking the next couple of weeks off.  Yesterday was a busy day - we had appointments at Brigham and Women’s, and then we checked into the Yawkey Family Inn (hospital family housing).  I had an ultrasound, an appointment with the doctor, and a NICU consult at B&W.  Everything went well.  We learned more about next week’s timeline - from the induction on 11/1, through the hours after birth, and the surgery a couple of days later.  The baby will be taken over to the Boston Children’s CICU very shortly after birth to get on the necessary medicine, to receive an echocardiogram, and to be monitored by the cardiologists.  I will stay in my room at B&W until I’m released, but can simply travel across the indoor walking bridge to Boston Children’s whenever I want.  Mike can certainly do the same as well.

We are very impressed with the Yawkey Family Inn.  There are about 22 family rooms here.  We have a room on the third floor that sleeps four people.  The main floor of the (very large) house has a big kitchen, and a couple of community rooms to hang out in.  Within the ‘playroom’ are plenty of DVDs that you can take back to your room, and return after use.  You can store and make your own food in the kitchen, or you can eat from the communal food in the pantries.  There is a calendar of events - mostly geared towards the many child patients that stay here.  Dunkin Donuts donates coffee on a daily basis.  There are a slew of volunteers and various groups that bring in homemade meals for the families staying here.  Last night we had chicken noodle soup and cornbread.  We sat with a few parents (from Panama, Tennessee, and Vermont) that are here with their children.  Meanwhile their children were helping a few girls from a Northeastern sorority make cake for everyone.  Everyone is so friendly and compassionate, it’s truly a wonderful environment that brings so many parents and children together.  Thursday night is pizza night - Regina Pizza, a popular Boston chain, provides it every week.  It is very evident how valuable this house is to so many families, as a lot of them are here for multiple stays per year.

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And now, from the beginning (10/19 post)

We found out about our baby's heart defect just before 4th of July weekend.  To say the least, it was very shocking and saddening in the beginning, but we’re hopeful and encouraged now.  We came to a point where we had to stop reading everything there was to read on the internet, and just start being positive.

In early June we were at our normal ultrasound/checkup and the sonographer was having a hard time getting a clear picture of the heart.  She was ��complaining’ that the baby was moving around too much and that the baby was putting its hands in the way, etc.  After our doctor spoke with this sonographer, he decided he wanted to make an appointment for us with “Maternal Fetal Medicine” at Hartford Hospital.  This appointment was set up for a month later on June 30th.  Essentially, this is a group of specialists in the hospital that are OB/GYNs with extra training.  They are called in as a type of consultant when there is an expected risk, and they then do focused ultrasounds to detect any issues.  However, at the time, we didn’t really realize any of this.  We didn’t think it was too serious of a matter since we weren’t going to be seeing them for another month, and literally every test and every ultrasound had gone so well up until then.  I was having a very normal and good pregnancy.  Even in that appointment where they couldn’t get a clear picture of the heart, they told us so many favorable outcomes of the ultrasound and recent bloodwork…including how strong the heartbeat was.  We thought that we were simply going to this maternal fetal medicine appointment to retrieve a good picture of the heart so that our doctors had it.  A check in the box, if you will.  Well, not so much.  After a detailed ultrasound and echocardiogram, the Doctor at Maternal Fetal Medicine told us that he is ‘95% sure’ that the baby has a heart defect called Transposition of the Great Arteries.  With this congenital heart defect, the two main arteries leaving the heart are transposed, or reversed.  Therefore, oxygenated blood cannot and will not circulate to the body.  No one will survive with this issue so a surgery at birth is necessary.  (The baby is fine while in Mama’s womb.)  The baby will likely turn blue due to lack of oxygen at birth, or shortly after.  He spewed off 20 more minutes of information as I bawled and as Mike tried to hold it together.  Thank God Mike was there to actually absorb some of the information…as he’s very knowledgeable with anatomy and biology anyway. 

After this appointment we had to wait an entire week to meet with the pediatric cardiologist at the children’s hospital in Hartford, CCMC.  This was the absolute longest and most difficult week of our lives.  I spent every hour either researching or melting down.  I came up with such a lengthy list of questions, and killed myself trying to find answers before actually talking to someone (…say a cardiologist) that would have all of the answers.  From all of the information on the internet that we had read, the defect can come along with other issues and defects (both at birth and in the future).  I could not stop reading, but it was so bad for me to do so.  We had so many questions for the cardiologist regarding the surgery, the potential related defects or complications, issues 20 years down the road, limits to physical activity/in sports, scars, etc.  I was so anxious and stressed all week before meeting with her.  It was very difficult for me to take things one step at a time.

One thing we did know is that we were very lucky to know of this situation ahead of time.  Our doctors will be ready when I give birth, with a cardiology team on hand.  Some people don’t figure this out until their baby is born, and then they are surprised and in a scramble.

Meeting with the pediatric cardiologist for the first time left us reassured, and with hope and encouragement.  We were, and still are absolutely amazed at the knowledge/skill/intelligence of all of the doctors we have seen.  For about an hour, the cardiologist completed an ultrasound and echocardiogram (really focusing on the brain and the heart) and then explained every detail to us with hand-drawn color-coded pictures.  She confirmed the defect, and the necessary surgery.  She said that as it appears to her, there is nothing else going on…no other defects or issues coming along with this transposition that would complicate things.  It was a great relief because since receiving the news from the Maternal Fetal Medicine office, over that long week before getting to meet with her, we had very slowly been coming to terms with this one transposition defect and one surgery.  …But we were terrified of anything else going wrong, or receiving any further bad news.  So in the end, the cardiologist appointment went as well as it could have.  Our child will have cardiologist appointments regularly for its entire life, and they will be on top of any issue that may come up down the road.  For example, they may need to do some rounds of angioplasty down the road to widen up some narrowing veins, etc.  Since that first cardiologist visit we have met with a cardiologist every 4 weeks.  The baby’s heart is closely monitored to make sure everything else is developing and growing normally, and that there are no other issues besides the transposition.  This transposition issue seems isolated, which is good in a sense.  We just hope it stays that way, and that nothing starts to complicate matters.

Our normal OB/GYN doctors still treated me as a “normal pregnancy” because as I’ve mentioned, everything else had gone so well.  They would say "there is just one mechanical problem we have to fix once the baby arrives." However, because of the defect, the pregnancy switched to “high risk” towards the end.  This means two visits to the OB/GYN office every week for non-stress tests, ultrasounds, and meetings with the doctors.

So…we’ve had a lot to think about and figure out throughout the second half of this pregnancy.  This is an extremely rare defect, but as of ~25-30 years ago, they do have a solid surgical procedure for it.  They really can’t find a cause for it.  From what I’ve read, the defect could be the result of genetics, pregnancy over 40, a mother with diabetes, a mother with alcoholism, etc.  None of which apply to us.  And because the surgery is only 25-30 years old, we really don’t know too much about potential issues or necessary procedures later in the child’s life.  The defect requires open heart surgery to switch the arteries, and that will take place ~48-72 hours after birth.  They need to wait this long because they want everything in the baby’s body to settle, like the lungs for example.  The baby will go on medication right when it’s born to make sure that the heart can distribute oxygenated blood until the surgery takes place.  A balloon atrial septostomy procedure may also be necessary at birth.  This procedure is a catheterization - it will enlarge a hole in the heart between the left atrium and right atrium.  The catheter has a balloon attached to it and will likely enter the baby’s body through the groin.  The larger hole will again improve the oxygenation of the blood until the baby undergoes the open heart surgery.  After the open heart surgery, the baby will then be in the ICU for ~2 weeks, and recovering in the hospital for probably another 2 after that.  Because it’s so rare, we were told by the cardiologist that our Hartford children’s hospital only does this surgery about 2-3 times per year, tops.  They do many other heart surgeries on children and babies, but not this particular one.  So, through the cardiologist and our own research, we were instructed to take a look at Boston Children’s.  They are #1 for pediatric cardiology, and they have seen much more volume of this specific surgery.  They actually designed and perfected this specific surgery 25-30 years ago.

We first went to Boston in the first week of September, and then again the second week of October for our last echocardiogram before delivery.  We met with the cardiologists at Boston Children’s and the OB/GYNs at Brigham & Women’s.  We also toured the Cardiac ICU (CICU) at Boston Children’s, and saw the setup for our baby post-surgery.  Boston Children’s doesn’t deliver babies, so we will deliver at Brigham & Women’s, and then do the surgery with the cardiac surgeons at Boston Children’s.  The two hospitals are attached with a walking bridge.  There was no new news that arose out of our visits to Boston.  The doctors see the same issue.  We will head up to Boston at about 38 weeks pregnant and stay there until the baby is ready to come home.  We’re arranging it this way because they obviously don’t want me to go into labor early, and have to worry about getting all the way to Boston.  We also decided that I will be induced on November 1st, 5 days prior to my due date.  The hospital offers family housing (think Ronald McDonald House) which costs $30/night…much better than the Boston hotels they listed for us!  The family housing will be our cheap Boston apartment for the potential 5+ weeks there!

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Why we're blogging... (10/19 post)

Our first baby is due on November 6, 2016.  I’m currently 37.5 weeks pregnant.  At just about 22 weeks pregnant, right before the 4th of July, a heart defect was discovered in our baby via an echocardiogram.  Recently, the social worker at the hospital suggested that we create a blog to keep friends and family informed. We agreed- a blog will be a great way to share our journey with our family and friends as we bring this baby into the world.