Boston: take 4- A journal entry

It’s been a pretty quiet trip. Words and poetry have not come easy. The days have been good though. Pre-op had a bit of excitement to it anticipating the day we have been planning since his birth. A daunting feeling would sweep over me with the wind and fear crept in when I least expected it. When Jack would laugh or play pat-a-cake all by himself, the tears would flow. All kinds of tears – happy tears, fearful tears… Part of me felt like I was being mean handing him over to experience pain. The other part excited that his brain would no longer be under all that pressure and he would now have the opportunity to flourish. Seth focuses on this part. He doesn’t struggle like I do. He trusts and believes, and I love him for this. I can’t imagine doing this without him. His stability and faith help me remain anchored.

Surgery was much shorter than anticipated. A mere 5.5 hours from start to finish. here were the reports:

Anesthesia said, “Everything went a lot better than we were expecting!  He has four iv sites because he was a difficult draw. We used ultrasound to find the veins but he did good with that. He required only a half unit of blood so thats great!” He came out of the OR extubated and breathing on his own… the mask was mostly mist to ease pain in his throat. They also said that Jack looks good! that the plastics team did great work – so I can’t wait to see how he looks!

Neurosurgery said, “His brain was under quite a bit of pressure and as soon as we opened up the skull you could see the brain relax. The ventricles in his brain will probably get fuller now for a little bit as the brain adjusts to having more room. Hopefully the arteries at the base of the brain will now drain at a more appropriate speed allowing for the ventricles to shrink. We will have to keep an eye on this over the next few months.” It turns out that the extra fluid right now is helping his skull stay open where it was fused – so they say its a good thing 🙂

Craniofacial surgery said, “It wasn’t an easy one to do. Because of the increased pressure, the brain was pushing up on the skull and caused the bone to thin out everywhere. Imagine you were working with clay, the less clay you have, the harder it is to shape it how you want… this being said, I was able to move the front portion out 18 millimeters forward, allowing enough room for the brain to grow the way it needs to.” He put in dissolvable plates to keep the bones from refusing and allowing space for new bone to grow. One doc said that apert kids are really good at growing bone and that was part of the problem 🙂 so we’ll see!

While we were adoring Jack later that night, we got a surprise visit from Jack’s hand surgeon who happened to be on the unit following another patient. He examined Jack’s hands and feet and was very pleased with the way Jack is healing!  He said that Jack has chubby baby hands and feet which made me smile. His hands and feet are so odd that to think of them as your typical chubby baby just makes him cuter somehow 🙂 as if that’s possible…

His first night in the ICU was uneventful – PRAISE GOD! I found myself thanking God that he does not tire or grow weary as I laid my head on my pillow, unable to stay awake and care for my tiny baby boy… I knew he was in good hands. He has been responding well to the meds and sleeping okay… he kept startling himself awake and then crying out – he was much easier to settle once he was able to eat – in typical Jack style 🙂  He has not thrown up at all which is a blessing as well. His throat sounds crazy hoarse and his congestion is pretty bad as we’re unable to use saline or a catheter to suction him. He has a drain from his head to keep an eye on the blood loss from the sutures. So far there has been very little blood loss which is wonderful. His heart rate has been fluctuating some which they think may be due to the steroids he is getting – so we may stay in the ICU for a bit to watch that, otherwise we’ll be transferred soon the normal floor.

I am surprised by how good it feels to be with Jack now. HE DID IT!  Every time something major has happened: Jacks birth, and every surgery after.. I feel this anxiety of “what’s he gonna look like…” each time I think I’m gonna shy away from him because he’s gonna look scary. But as soon as I see him I think, “How could you ever be scary little one? You’re SO tiny!” He’s been such a miracle, and he is stronger than I anticipated. He doesn’t seem afraid now, even though he can’t open his eyes, and his throat hurts, and he can’t breathe that well… he seems peaceful in his bed… sometimes in pain… but overall peaceful.

Ive drawn a lot of comfort from the old song:

Day by day, and with each passing moment,
Strength I find, to meet my trials here;
Trusting in my Father’s wise bestowment,

I’ve no cause for worry or for fear.
He Whose heart is kind beyond all measure
Gives unto each day what He deems best
Lovingly, its part of pain and pleasure
Mingling toil with peace and rest.

Every day, the Lord Himself is near me
With a special mercy for each hour;
All my cares He fain would bear, and cheer me,
He Whose Name is Counselor and Pow’r.
The protection of His child and treasure
Is a charge that on Himself He laid;
“As thy days, thy strength shall be in measure,”
This the pledge to me He made.
Help me then in every tribulation
So to trust Thy promises, O Lord,
That I lose not faith’s sweet consolation
Offered me within Thy holy Word.

Help me, Lord, when toil and trouble meeting,
E’er to take, as from a father’s hand,
One by one, the days, the moments fleeting,
Till I reach the promised land.

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6 thoughts on “Boston: take 4- A journal entry”

  1. Shannon, I love your honest, heartfelt updates–and I LOVE hearing such good news about your precious Jack. Thank you so much for taking the time to keep everyone informed. Prayer seems so much more intimate when we know exactly what we should be praying…and praise is also more inspired when we know specifically all the wonderful things God is accomplishing on Jack’s behalf. The hymn you posted is a particular favorite of mine, and now I will think of you and pray for you whenever I hear it or sing it. ~Nancy

  2. Another beautiful tribute to God our Father who cares for Jack ever more than we ever could, which is truly hard to imagine!! I miss him so….but keeping busy with Lucy:) Day by Day….we trust…God loves…gives peace….even Jack knows it! I love you !!

  3. So grateful to read this report tonight! Wow, reading this brought back so many emotions of B in that same boat–you guys are doing an amazing job! I am so happy that Jack seems so peaceful. He is just the most amazing little boy and I am so grateful for him. God has Jack in the palm of His hand and He has big, beautiful plans for Jack. So grateful that the surgery went well. The swelling was hard for us, but then when it peaks, it is incredible how quickly these babies heal–it is truly right before your eyes. Hang in there–you are on the downhill slide now!! We are praying for you guys and sending all our love to Jack for continued peace, and every blessing of comfort and rest. And Bennett sends a big hug to his buddy! 🙂

  4. Thank you, Shannon, for sharing your heart with us. Thanks, also, for stepping aside and allowing God to be magnified in this time of great trial and testing for you and your family. Jack has won over many hearts; I can only imagine the immense love of God for your precious one! Thanking God, right now, for his continued watch care over you and little Jack-man.

  5. Hi Shannin,
    It’s not too often that it happens, but tonight I was crying while I read this– you are an amazing mama for BOTH your babies and an amazing Jesus follower (to His glory). Thank you for writing it just like you did. Praying again tonight while the house is quiet.
    ~ cousin Katie

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