Today was extremely difficult for all of us, and especially trying for me as a mother. Our whole situation is taking a toll on all of us, Evan has been acting out and is clearly a bit upset with us each time we visit...I completely understand why and hope he knows how much we miss him. We completely uprooted ourselves to St Louis and he went from spending every day since birth with me, to spending nearly 11 straight days without me. I hope once we get home and back into our routine that he makes the transition easily. He handled several transitions well before; from breast to goats milk, from crib to full size bed, from home to preschool twice a week, and he seems to love babies lately. We are planning on spending more time with him each day as we hopefully get closer to heading home...hopefully that helps!
Even more difficult, here hospital side, they tried to wean Titus off the Fentanyl drip so they can get him breathing on his own. Fentanyl is a narcotic and suppresses the respiratory drive, leaving him unable to breathe on his own. We need to wean him off the drip in order to get him breathing on his own and get that blasted breathing tube out! However, the Fentanyl is also his pain medication, so in order to continue to manage his pain without the Fentanyl, they need to start him on Dexmedetomidine. Finding the perfect balance between these is a challenge as each baby responds different...they want to have him able to move and breathe on his own but be calm enough to not cause harm or allow too much movement that would hinder healing. In our case, Titus woke up too much the first time they weaned and he freaked out, thrashing his arms and arching his chest, his respiratory rate and heart rate escalated. They immediately had to sedate him again and tweak the measurements.
This scenario repeated itself several times through out the day which was SO SO SO hard to witness. Each time he would come to and open those sweet eyes, there was a bit of excitement and my heart melted for him...but shortly after, he would turn bright red and squint his eyes in a silent cry since the breathing tube prevents any noise from escaping. I tried to soothe him at his bedside, rubbing his head and patting his chest but it was so overwhelming. It was awful to stomach...my innocent Titus lying there helpless, in pain, unable to be soothed or comforted, while they calmly try to figure this out. I grabbed our bible and read outloud, prayed and prayed, cried and cried several times through the day....A day I was so looking forward to in terms of celebrating the beginning of his recovery had turned into one of the hardest days yet. I was drained emotionally, physically, spiritually....I got angry with God and my heart was hurting.
Jake could clearly see my struggle and graciously offered to stay with him and comfort him while I showered and got some rest with Evan that night. It was so hard to walk away, but it just what I needed...Jake has been my rock and I cannot imagine having done this without him...he stays strong and reminds me to keep my eye on the prize--getting everyone back home!
Psalm 119:114-115
You are my refuge and my shield; I have put my hope in your word.
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