The last five days have been
such a roller coaster- full of miracles, stress, pain, love, unknowns, smiles,
tears, and so much more. Around 5:30 Wednesday evening, Hayden's cardiologist
confirmed that he has HLHS (Hypo plastic Left Heart Syndrome) and would need
the 3-stage reconstruction of his heart starting with the Norwood procedure,
the first of his three open-heart surgeries. About 20 minutes later we were
told that his surgery would take place the following morning at 6:30 am.
Processing all of that information in such a short time frame was near
impossible but we powered up and made the necessary preparations as quickly as
we could to make sure family was here and that Hayden was baptized
beforehand.
The remainder of our evening was
spent holding and kissing Hayden. We soaked up every ounce possible for the
next 12 hours. We wanted to make sure when he left us the next morning that he
was 100% calm and full of peace and love. The next morning started what will
hopefully be the hardest day of my life. After we had Hayden baptized in my
arms, they took him back to start the preparations. One of the hardest parts of
that day was giving him one last kiss and watching him get further and further
away from us. Once we were settled, our nurse took us to meet our chosen surgeon,
Dr. Spray. Dr. Spray is the chief of surgery and we are told he is among the
best surgeons in the world for these operations. Meeting him was breathtaking
and surreal. I wanted to say so many things to him, but I just didn't have the
words. I thought several times throughout the night before what I wanted to say
and how I would express my un-express-able gratitude. What do you say to the
man who will be saving your child's life? So I think I just stared at him and
nodded- mesmerized by his abilities and by what he would soon be doing for my
son and our family. Later that afternoon we joked with another cardiologist
about how to ever express our thanks- fruit basket? Dr. Spray later came in that afternoon to
check on him and again we were at a loss for words. I just continued to gaze at
him and at the wonder of what he did for my son.
So, after we met Dr. Spray, we
were told to wait in the family room and our nurse would give us hourly updates
on his progress. The next few hours were most difficult to think about anything
other than the unknowns of what Hayden's surgical outcome would be. So many
different scenarios entered my mind and I found myself thinking horrible
things. Finally I was able to distract myself a bit and was comforted by the
nurse's updates on his progress. When he came to tell us that surgery was over
and they were just finishing up, I felt myself breathe just a little bit
easier. We met with Dr. Spray and he told us all went well. He was happy with
the outcome and expected his recovery to go rather well. He would check in on
him in the coming days.
It felt like forever until we
could come see him again- and we were scared about how he would look. The sight
was not pleasant, but we knew it was all in good recovery and it is what Hayden
needed to save his life. Later that afternoon, he continued to recover and
fight hard. He appeared to be doing really well and the doctors were confident
he would get his breathing tube and chest tube removed the next day. And they
were right! The next morning I was surprised to see a text from Rob of Hayden
free of nose tubes! And soon after his chest tube was removed. The rest of the
day was pretty mellow- we just stayed bed-side waiting for him to wake up. He
was pretty swollen, but did crack his eyes a bit in the later part of the
afternoon but he also started struggling to catch his breathe and as the
evening went on, he seemed to be in a lot of pain. Any parent knows that
watching your child in pain and not being able to do anything to help them is
in itself heartbreaking and devastating. I could literally feel my insides
tightening and tensing up. They finally gave him morphine and assumed the
struggle to breathe was based on his level of pain.
At around 3am his breathing got
worse and they decided to put him on a stronger nose pump to assist him. When I
got back to his room at 5am, they said his gases were low and if they did not
improve, they would have to put the breathing tube back in and it would remain
there for at least 2-3 days or longer. A few hours later, the cardiologist came
and did another echocardiogram and explained to us that they thought maybe the
hole in Hayden's heart needed to be a little wider from the surgery and that
they may need to do a procedure to balloon it or make it wider. If it wasn't
that, they thought maybe his breathing tube had been pulled too early and if
that was the case, they may just sedate him more and give him some more time to
breathe on his own. We are currently awaiting the results from his echo and hopefully
we can go forward from here and continue to improve.
One of the many things I have
learned throughout this process is that every baby’s journey is different and
that none are free of set-backs. When the surgeons and nurses tell you that the
first 72 hours are most critical and unknown, they really do mean it. Day by
day, hour by hour.
Again I thank you for all of
your support- I don't know how to properly express my gratitude for all of the
love we are receiving and in so many different forms. Please keep it all
coming...I am just dying for the moment they tell me I can hold him again.
Prayers have been answered in other forms this past week, and I believe they
are working. Please keep praying.
(This picture is from right after he was baptized and before he went into surgery.)
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