Monday, January 31, 2011
Last Week in a Nut Shell
Surgery Day: Tuesday 1/25/2011
Surgery went well! Little man gave no trouble, but Dr. Lam was suprised to find Douglas had no diaphragm at all - just a little lip of tissue, and he found very little of his left lung. Once he brought down all the bowels, liver and intestines, he was able to place a synthetic gauze patch to replace the absent diaphragm. Doctors said they would watch him closely - since he is still on ECMO, the risk of bleeding is very high, and since the hernia was so big, the pressure in his abdomen may need to be relieved, but all is good for now!
So after he was all cleaned up,we were able to see our sweet little boy! We gave love and kisses, told him how proud we are. It felt soo nice to have that hurdle out of the way... on to the next.
Day after surgery: Wednesday 1/26/2011
Brad and I made our morning phone call over to the NICU to check on Dougie, and nurse Jamie let us know Dr. Lam would be back in today (heart drops). As they had suspected, the pressure was too much for little man's tummy. The lower half of his body was blue and swollen, and Dr. Lam would need to go back in and re-open his incision to relieve the pressure and check for bleeding. He would put a suction tube in to drain any access fluid. Brad and I head to the hospital and arrived just as surgery ended, and Dougie looked much better from what the nurses told us. He got his color back and the swollen tummy started to go down already! The neonatologist told us this is a crucial time for Dougie now: he will need to come off ECMO as soon as possible. He told us this is a very fine line; determining if it's too soon to take Doug off, but also knowing if he doesn't come off now, it could be fatal. They decided to do a "trial down" - basically, they would shut the machine down and see how he does. Dougie lasted 23 minutes!
After talking to the doctor a little bit more, he told us that Douglas coming off ECMO would be an enormus battle. He said Dougie is the sickest baby they have had on ECMO there at CHOC, and maybe one of the sickest babies they've had in general.
That may scare most mothers, but suprisingly I took it in stride thinking, "He may be the sickest baby, but he is without a doubt the strongest and will be the most incredible success story!" That evening, we gave our little man a big pep talk, and prayed for hours that this next hurdle of getting him off ECMO go smoothly.
Bye Bye ECMO: Thursday, 1/27/2011
-and smoothly it went. We could not have asked for a better result from Dougie when he was taken off ECMO. He did so well, and gave the doctors and nurses no trouble at all. Brad and I were so amazed by our boy, and soo thrilled to see that huge intimidating machine being taken out of Doug's room to maybe save another babies' life - and perhaps scare the hell out of another family.
Happy Birthday Mommy: Friday, 1/28/2011
I got to see my baby and my baby saw me! After being taken off ECMO, Dougie has had his sedatives reduced and is slowly being weaned off them, therefore making him more alert. He was able to look around and wiggle a little bit - it just made my whole day! Everything I asked for my birthday I got. I asked Dougie to get off ECMO successfully and he did. I asked Dougie to pee out the fluids he'd been pumped with and he did. I asked Dougie to keep pumping his left lung up and he is! Proud doesn't even begin to describe how I feel.
No News is Good News: 1/29-1/31/2011
Dougie is doing well, peeing regularly, so they were able to get rid of his diruretic. He is weighing in at 8lbs 5.6oz, and is stable! We are slowly weaning him off of the high frequency venitilator, he will then be put on a conventional ventilator. Things are slowly starting to disappear... some IVs are gone, some meds are gone, lower doses of pain and sedation meds. Brad and I could not be happier right now, last week was by far the most difficult, most agonizing time we've ever gone through. I hope we will never have to go through a week like that again. I pray it only gets better from here on out for our little man - he is so incredible. Only 14 days old and has already had surgery 4 times, every time he is challanged he has shown us all his strength and resilience.
God - please keep on blessing our amazing little man so that he can come home with us one day soon...