Day 4 - Continuing Progress

Continuing to look better each day.  He is doing well on the TPN but needed to start an insulin line due to low blood sugars.  His weight in the morning was 8 lb 15 oz but that should come down as he continues to lose fluids.  He did look rather puffy and swollen this morning but looks much better this evening.  He has been negative fluid (more out than in) all day and that is great as he reduces this swelling.  They took out his catheter so he's peeing in diapers now!  They monitor the fluids out by simply measuring the dirty diapers.  They also removed the chest tube for drainage from the surgery so he doesn't have that big tube coming out of his chest.  He's far from a normal baby boy but he's looking more and more like one every day.  Check out the handsome guy in the picture below!

Today was actually pretty quiet and uneventful as he has maintained very nice oxygen levels in the mid to upper 70s, blood pressures around 60/40, and heart rate in the low 160s.  His surgeon, Dr. Turrentine, came by to check on him today and said he is looking and doing well.  Once we get the rest of this extra fluid out of his system in the next few days we'll be able to start game planning for the next procedure.

Beth has been discharged and feels pretty good.  She had a little elevated temperature last night and feels like she may have pushed herself a little too much yesterday trying to get back and forth from University to Riley in order to see Shawn and still be treated for her surgery.  She is doing much better today!

Day 3 - Stable and Improving

Day 3 brings much the same as day 2.  More recovery and more improvements.  They continue to fiddle with his medication cocktail to try and gradually ween him off of a few things.  He is showing more swelling today due to the excess fluids in his system but continues to pee like a champ to combat that.  They started a nutrition line (TPN) so he'll start to get some calories, amino acids, vitamins, etc.  It goes directly into his heart to be immediately distributed and absorbed into his body so his stomach is still sitting idle at the moment.

His oxygen saturations are remaining more stable while needing less intervention to do so.  This is a great indication that his lungs are indeed improving.  Right now as I write this at 9pm his oxygen is holding nicely at 78% and his blood pressure is at 61/38.  Both right where the doctors want it.  He's also only getting normal air amounts of oxygen through his ventilator so all that oxygen saturation he is doing all on his own!

Only real alarm of the day was an unplanned echo screening to look at his stent to make sure it didn't move.  The stent as shown in this morning's chest x-ray looked quite a bit different then the x-ray I showed on the last post, yesterday's x-ray.  They wanted to perform an echo to just make sure the thing wasn't floating around in there.  The echo clearly showed the stent, that it passed through the septum, and that blood freely flowed through it.  So the stent had not moved.  They probably just took the x-ray at a slightly different angle today as opposed to the first two days.  A needless scare but if that's all we'll have to deal with then we'll gladly take it.  

Day 2 - Recovery

Shawn is recovering well.  Beth and I were present for his first day of rounds and we were told that he is doing much better today then yesterday.  That is to be expected as he just had a major open heart procedure yesterday!  His oxygen saturations are keeping somewhat stable in the mid to high 70s which is fantastic.  He is having a little trouble keeping his blood pressure up but it seems like a major balancing act what with all the chemicals and fluids he is on.  They started him on a diuretic which will help get the fluid that's been backed up in his lungs this whole time in utero out of his system.  It will also help with his swelling.  The doctors are feeling like his lungs are definitely getting better since his saturations are looking so good with also the concentrations they are seeing in his blood draws.  Check out this crazy picture I was able to take of this morning's chest x-ray.  You can see the IV real easy and if you look real close you can see the stent they placed yesterday.  It is HUGE!!!  Pretty incredible stuff.

First hair washing!

 His foot... just because!

Here's a good pic to see just some of the medications/fluids he is on.

Beth is doing remarkably well.  Up and moving like a champ and the doctors are amazed how good her incision looks and how well she is recovering.  She still is obviously very tired from everything and with having to pump every 3 hours she has had little opportunity to sleep.

Big sister, Zoey, came for a visit today!  Beth and I were so excited to see her.  She was as happy as ever and is having a blast hanging out with Grandma and Grandpa!  She won't be able to see her little brother for a few months but when she does she'll no doubt love him as we love him.  It's comforting to know that Shawn will have a tough brute of a big sister to look out for him.

Pics from the BIG day!

Here are a few pictures of the day that we were able to grab and the staff at Riley were kind enough to take for us during the procedure.  Shawn and Beth are still doing great.  Shawn's blood oxygen levels have settled around 75% saturation which is right where the doctors want to see it.  He is already my inspiration.  Everything went as the doctors had hoped.  We are both so very blessed and Shawn is living proof that miracles do exist!

 

About to go into the OR. Always positive and smiling.  I know where Shawn gets his strength!

  Dr. Farrell was able to grab some great pics from the operating room for the delivery and Shawn's surgery.  Incredible and inspiring but I'll save you the gory details.

 

  

Our little guy hooked up and resting after the procedure.  Looking good with a full head of hair.  His big sister Zoey will be so jealous!

 

 Beth was able to sit up and get in a wheel chair after barely an hour after her c-section to go see Shawn.  The power of a mother's love!

Happy Birthday Shawn!!!!

He made it through with flying colors!!!! Strong, kicking, and stable!! He's my little boy that's for sure! What a fighter!!!! The doctors were able to deliver him and rush him to the next room where his doctors were waiting. They had his chest open within 15 minutes and had a hole punctured through the septum and a stent placed quickly. All without the need to go on bypass! Blood oxygen levels went from the 30s to the 90s immediately!

Beth is also great with no complications! Truly a blessed Poppa right now.

I want to thank everyone for their thoughts and prayers. I assure you they were answered today!

Also a big thank you to all the miracle workers at Riley and University Hospital. You guys rock!!

Welcome to the world, little man! We won the first first round now let's keep going!

The BIG day

We had another ultrasound and echocardiogram on Tuesday and Shawn is still getting bigger and bigger.  He is now 5 lbs 11 ozs.  He passed his biophysical profile exam with flying colors and if not for his heart you'd think he was a strong, thriving baby boy.  We got a little more information on what to expect at the delivery and a little bit thereafter but maybe most importantly...

We have a date!  Shawn's birthday will be March 27th.  Speaking with Dr. Cordes and Dr. Farrell they have scheduled two adjacent operating rooms at Riley for 3/27.  That will be only 36 weeks along for Beth and Shawn but the doctors are not confident that with the excess fluids Beth is carrying that she will make it much past that date.  Going into unexpected labor and having to pull together the necessary resources in a rush is a much greater risk to Shawn then being delivered two more weeks early.  The doctors have stated that he is big enough currently to do these procedures.  They will perform the c-section and post op on Beth in one room and work on Shawn in the next.  In fact they will be performing what is called an EXIT procedure where they will deliver him halfway and begin working on him while still attached to Beth.  They will secure breathing tubes and IVs before cutting the umbilical cord.  They will then rush him into the next room where a team will be waiting to open up the atrial septum either via cath or surgery. 

To get an idea of the level of coordination that will be needed on the 27th, Dr. Farrell sent us the below list of all parties needing involved for this delivery.  Shawn will enter this world with quite an entourage!  The whole team will consist of 30+ medical professionals.

1.   High risk OBs

2.   Pediatric Cardiology

3.   Pediatric Cardiac Interventionalists

4.   Pediatric CV surgery

5.   Pediatric Cardiac critical Care/Intensivists

6.   Pediatric anesthesia

7.   Neonatology

8.   Pediatric general surgery

9.   OB adult anesthesia

10. Perfusion team

11. Cardiac OR/scrub team

12. OB scrub team

If Shawn survives the surgery and the subsequent atrial septum intervention we will play a wait and see game.  Both events of the days will be extremely invasive and stressful on the little guy.  If they succeed in opening the septum, relieving the pressures, and stabilizing him after the procedure, the rest will be on him and how much he wants to fight.  If he responds well and seems to be making improvements then we can proceed with the next stage.

As a parent you want to shelter your children from the perils of the world.  You want them to smile and laugh, hug and love.  You want to minimize their recollection of pain to a faint and distance memory.  It pains me to know that my son will go through more pain and peril in his first 29 minutes than I have in my first 29 years of life.  It pains me greater that there is little more I can do for him at this point. I hope he knows that I will be there for him. I hope he knows I will be his biggest supporter, his biggest cheerleader. I hope he knows that I will be right there in the corner as he fights this. Even though he does not know me yet nor I him, I hope he knows that I love him. 

So Many What Ifs...

I realize it has been some time since our last update.  Things were tough for us the days following our failed trip out to Boston.  We tried to spend some time not thinking about it, not thinking about anything.  Maybe it was disbelief or denial that all this could be happening to us.  Maybe it was the surmounting stress of everything that we were feeling at the time.  We tried to simply get away from it for a few days and focus on Zoey and ourselves.  We realized quickly, however, that while you can shut your mind off at times along the journey your legs continue to carry you further down the road and it doesn't take long for obstacles to present themselves to snap you back into reality.

The last month has been filled with doctor appointments, more ultrasounds, another echo cardiogram, blood work, and stress tests.  Beth has been admitted to the hospital's triage area twice in the last month for extended monitoring.  Once for further signs of pre-term labor and again for Shawn being unresponsive during an ultrasound.  I've felt him kick like Chuck Norris and Beth says he moves around like an Olympic gymnast in there so they must have caught him in a nap that day.  Each time we were discharged after several hours and free to go home but they take a major hit towards our mental and emotional state.

As far as Shawn and how his condition is progressing, it continues to worsen.  With each ultrasound he grows bigger and bigger and he is already past 5 lbs, but that is where the silver lining ends.  During Shawn's  last echo they were able to confirm that his atrial septum is completely intact and there is zero communication and no way to mix oxygenated blood between the upper chambers.  His left atrium is also considerably small relative to his condition.  That creates accessibility and safety concerns when trying to open the atrial septum after delivery.  He is already showing signs of thickening and dilation in his pulmonary veins as well as developing abnormalities in his lungs due to the extreme pressure.  The doctors have told us that he will not make it out of the delivery room alive without some unprecedented levels of emergent intervention.  They are currently in the midst of evaluating different options, organizing mock trial runs, and developing a delivery and immediate care plan for Beth and Shawn.  Due to the immense level of coordination this delivery will require they have said they will likely be pushing our delivery up to 37 - 38 weeks to minimize the risk of Beth going into labor early.  We have another echo scheduled tomorrow morning and we will get a chance to sit down with the cardiologists and see what they come up with.

We are in uncharted medical waters here in the severity of Shawn's condition and our level of resolve to fight even for the slightest chance that he can survive and be the beautiful, thriving baby boy that Beth and I see in our dreams.  There are so many what ifs at the moment.  We are hoping to be able provide a more specific update tomorrow.