Category: Spina Bifida

Good news today.   Ezra was taken off the ventilator and is breathing completely on his own.  The nurses want to feed him at 2pm so we’ll see how that goes.  He is looking good, and if he starts eating enough he wont need his IV until his next surgery.  Lauren is being discharged today and we will be able to start settling in more and getting routines for our long stay.  The doctors now anticipate what was going to be 2-3 weeks will now be 6-8. This is primarily for the tissue to heal around the wound.  There wasn’t much for the plastic surgeon to work with and it takes 6 weeks for the tissue to become strong enough.

We don’t know what will happen next except that they will recheck his head with an utra sound on Wednesday the 12th to confirm whether he will need the shunt surgery.  Dr. Scarli is pretty confident that Ezra will need a shunt, but if fluid levels in the brain go down, he may not need it.

For right now everything is going well and we hope that as he comes off the IV that well be able to see his little eyes.

The neurosurgeon just finished his portion of the first surgery.  A couple of weeks ago he was more optimistic, but after surgery he said that this was the worst he had seen.  Not words you want to here as a parent.  He did say that even though the defect is really bad it is not a prognosis of what his ability will be.  Last week I heard someone say that if you want a big opportunity, find a big problem.  You could say that we found a big problem.  We now have a big opportunity for God to demonstrate his faithfulness.  The plastic surgeon is now doing his job and will be at least a couple of more hours.

I cannot help but to think of Elijah in 1 Kings 19 who was discourage and loosing hope to the point of wanting to die.  All the while God was sustaining him he cried out that he was the only one left.  God gave him a command and then said,  in my words, by the way, there are 7000 others who have not bowed to Baal.

Sometimes, we feel like we are alone in out fight, but we know that there are others serving God along side us.  Thanks for being there.

Dave

We are in the waiting room preparing for surgery. The anestegiologist is in another surgery right now so we have to wait. We talked to the neurosurgeon, Dr Scarli and the plastic surgeon, Dr Mann.

Pastor Tim always talks about Pastor Dave advising him not to pray with his eyes. I would have to add not praying with your ears to that. Ezra is doing well right now, the nurses in the NICU are keeping him comfortable. In a few moments he will be having the first of many surgeries.

The preop report from the surgeons is that the defect is larger than normal. The use of his legs is likely to be very little below the hips. We still have to talk to ortho to see what they can do, like moving tendons and such. The plastic surgeon said the closure surgery will need longer than he expected. It will likely be a few hours.

The nuero surgeon also said he will likely need a shunt, but we’ll wait to be sure. What we were hoping would be a two week stay is starting to look like it will be longer.

After all the time we have had to prepair, it is emotionally draining. Having him here with us has helped, but we still cannot hold him. Now all we can do is leave him in Gods hands.

He looks strong, like a fighter, but he is still so weak. We pray for strength from God that he will not just get through the surgeries, but that Gods providence will be with him, and that Lauren and I will stand firm in our faith and the hope of out salvation.

We pray for ourselves what Paul prayed for the Ephesians.
 14 For this reason I kneel before the Father, 15 from whom every family in heaven and on earth derives its name. 16 I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, 17 so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, 18 may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, 19 and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.
 20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Dave

Our day started bright and early at 5:30 to get prepped for my surgery. We did have some down time waiting for things, but we took advantage of by trying to name our son. Once things got going they started going fast.

The C-section was pretty hard on me, but tonight I feel much better and everyone is telling me how great am doing after a C-section. Once they delivered Ezra, Dave was able to peek over the curtain and snap some photos for me. The doctors and staff were able to take care of him and bring him around so I could see him. I cried and still long to hold him.

Once Ezra was situated in the NICU and I started feeling better we were able to visit Ezra. He looks so good. This has been a very emotional day for both Dave and I. Tomorrow Ezra will have his surgery on his back. Because the spine opening is so large, about 4cm by 6cm, a plastic surgeon will come in to finish the closure. We don’t know exactly what will need to be done and this might cause his stay to be longer.
It is so hard to be away from my son and I can’t wait until we all are able to be together.

Here are some pictures from the day.

Thank you again for your prayers and encouragement. This has been one of the hardest days of my life but I know God is in control.