I don't have many pictures from the last few days so this is a text heavy post. He continued to sleep most of Friday and drink decently, enough to keep him hydrated but barely. We kept him on the pain meds around the clock so he was still really out of it. Then Saturday happened. We decided to try to stretch the interval of pain meds in order to slowly phase them out over the next few days. Terrible idea. Elijah was clearly not ready for that. The pain would keep him from sleeping and eating. Or the fatigue was keeping him from eating. Or the hunger was keeping him from falling asleep. Whatever way, it was the perfect storm of hunger, fatigue, and pain. It's terrible to feel helpless, to not know what to do to make your child feel better. We did try some watered down baby food which he seemed to really like at first but then after a few bites didn't want anymore. Until we offered the melted down vanilla icecream that is. He enjoyed a few bites but again, that pleasure faded.
Saturday passed. Nate suggested we go back to meds every six hours and reduce the dosage slightly. That worked so much better. Elijah even had a delightful half hour on Sunday morning after eating and drinking really well (compared to the last few days, not compared to his normal eating) followed by some playtime.
Playing with the super cool box that the super cool car came in
Sunday afternoon and evening went fairly well, though it appears morning is better for Elijah right now than the rest of the day. Nate's parents came over Sunday evening. Elijah actually got quite chatty with Grandpa Evans. They have a little bond of surgery, so Elijah had a lot to tell him.
Fortunately, Elijah has only been waking up once in the middle of the night since we got home. We have changed his sleeping arrangements three times to get the right balance of elevation to help with swelling and drainage, as well as peaceful and movement-constricting. The first night he slept in his pack n play which we elevated part-way. But by the morning, he was sideways at the bottom (not elevated) with one of his No-No's off. My heart sank to my stomach when I saw his arm had been free for who knows how long to go in his mouth. Then I realized he probably would have screamed in great pain had his little finger reached that sensitive new palate which definitely would have woken me up. The couch worked well for a day but was not a quiet enough place for him. Finally, we landed on the car seat in his room. The perfect balance of elevation, peace and quiet, and movement-limiting. There's no way he can get those No-No's off in the car seat. It helps a ton with the drainage too. I'm sure there is some parenting rule that says you aren't supposed to let your baby sleep in their car seat, but it works for us and maybe there will one day be other cleft parents who will need to know that the car seat did the trick for us.
So that all brings us to Monday. Oh Monday. Monday started out super exciting with my sister announcing the gender of her baby. Then my mom, Elijah, and I packed up and went back to the hospital for Elijah's post-op appointment to make sure everything was going well. I had a few things I wanted to make sure to discuss: Elijah's low-grade fever, the appearance of slightly odorous breath that was new as of this morning, the drainage from his nose...All of those things I was pretty sure were within normal limits following this surgery but I was looking forward to the doctor confirming these things. But what I was most excited about was to have our new plastic surgeon Dr. Tahiri (replacing Dr. Flores since he is sadly leaving this week) look in Elijah's mouth and tell us everything looked great so far. To tell us we were doing a great job with him and to keep up the good work.
That wasn't the news we got. Elijah has a pretty significant fistula (hole) in the back of his palate ALREADY. It's so far back that Elijah's tongue is usually blocking the view to it which is why we didn't notice it before. Dr. Tahiri checked 3 or 4 times to make sure. It was obvious that was not the news he wanted to tell us. I felt the tears coming the first time he said he thought he saw a fistula. Then I burst into tears when he showed me the hole. How could this be? Didn't we do everything right? I mean, yeah, he got his arm free that one night but the fistula is so far back he couldn't have done that without choking and it would have led to significant screaming which didn't happen that night. We have been diligent otherwise with the No-No's, with closely supervised time without the arm restraints, with the special feeding bottles (those same ones from his last surgery with a flexible catheter tip that we use to squirt milk into his mouth), with thinned out puréed baby food...
The only question I could then get out during that short visit was when the next surgery would be to correct the fistula. Six months to a year. We wait for the rest of the tissue to completely heal up and then they will make a surgery plan. He escorted us out to the front desk and had them schedule an appointment in his other clinic which is much slower than his cleft clinic so he could take more time with us. So we will head back on Sept 12. I sobbed when talking to the women at the check out desk. Sigh.
I called Nate in the waiting room and then he left Eskenazi (aka Wishard) to meet us in the lobby. He was clearly disappointed too but like most things is able to have a better outlook more quickly than I am. Big hug and more tears from me. His safe presence was needed in that moment. I got myself together and then we parted ways. We got in the car and the first thing from the radio was a woman speaking about this verse:
Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, (Romans 5:3 ESV)
Are you kidding me?! How sweet to my grieving spirit was that word. I so needed it in that moment and am thankful for God's provision in that very moment. My mom, Elijah and I went and got lunch, and my mom grieved with me and had more sweet, encouraging words for me.
I'm still processing this. I know this trial is so minor compared to what other parents go through with children who have serious illnesses. I'm sure soon it won't feel so devastating to me. It will be "just another surgery" and we'll move on. But for now, my heart is a bit achy. The tears still come when I talk about it so I may not be super open about it if we talk face to face in the immediate future. I am sad that we don't have closure (literally and figuratively) from this palate repair. I'm sad this hole will affect his speech and feeding. I am sad that Elijah will need another surgery. I am sad he has to go through more. I am sad that MY PLAN isn't the TRUE PLAN. I am sad that our work and my attempts to control this couldn't stop or prevent the hole.
But, I am utterly thankful for God's plan for Elijah. It is better than my plan for him even if I don't understand it. I am thankful that he is watching over Elijah and is in control. I am even thankful that this trial will produce endurance, for me, for Nate, and hopefully for Elijah too even though he is so young. I am thankful for the intangible peace he gives through the tears. I am thankful that I don't have to worry if Elijah has a fistula or not. Maybe that's twisted but at least now we know. I am thankful that I don't feel like this fistula was caused by us or could have been prevented by us - that would be too much for me to handle.
I am thankful that we did have such an amazing plastic surgeon Dr. Flores. His fistula rates are low, and I know he did his best. Looking back, I do remember he said that Elijah's palate was hard to close because it was such a wide cleft. Fistulas happen from trauma (something hitting a newly repaired palate and creating a hole - like a baby's finger or toy in the mouth). Fistulas also sometimes happen with no clear cause because it is such a delicately woven tissue. It's a complication of the surgery. Having a husband who is a surgeon makes me sad that unexplainable complications can happen even if they do everything right. It must eat at them. I wish I could protect Nate from that in his career. I know I can't and have to trust God will.
In all of this there are so many lessons that I am thankful to learn though with tears.
I am not in control.
Someone else is.
Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand. (Proverbs 19:21 ESV)
I am helpless.
Someone else is my help.
I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth. (Psalm 121:1-2 ESV)
I idolize the easy way.
Someone else carries me through the harder way for my good.
For the gate is narrow and the way is hard that leads to life...(Matthew 7:14a ESV)
I hope in the temporary.
Someone else is the eternal hope.
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. (2 Corinthians 4:16-18 ESV)
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