More good news

As I begin to blog tonight, it's been a few posts since I've written one....I am nearing the point of exhaustion, as any parent knows comes when the end of a day is nearing. Our home was filled with joyful screams and laughter tonight as the girls were acting goofy playing dress-up while I was attempting to clean. We have the Lady Antebellum CD on in the background, I am writing this and David is working. This CD was on earlier in the night and the girls and I were dancing and just playing around. Elsa is now drifting off to sleep and Emma is playing Barbies in the playroom with her cousin Delilah who is staying the night. It has been a wonderful night, following another wonderful day. The past few days have again been huge for Benjamin. Yesterday, they really started to wean off Benjamin's nitric oxide (this goes in with his oxygen, it's to help treat the pulmonary hypertension = high blood pressure in the lungs...this is the most difficult part to treat in CDH babes). When I walked into his room today, I realized how quiet and peaceful it was in there. I don't think I even realized how loud the machine that delivered the nitric was. As Ben was sleeping today, I stepped outside of his room into the larger room where they have enough room for at least 12 more babies. When I stepped into that room, the alarms were going crazy as they have a lot of babies out in that more open room. I was watching their monitors, and it took me back to when he was so much more unstable and he was setting off his alarms all the time. Then I looked over my shoulder back into his room, and it was still peaceful...no alarms, no more loud machines, just the quiet you'd expect while your baby is sleeping. I was so thankful, it took a minute to soak it all in. As horrible as I feel for the parents of those babies who are in distress currently, it felt good that THIS time, it WASN'T Benjamin.
He has now been off of the nitric for about 12 hours and his ventilator settings are getting lower and lower. Yesterday, when I left, his rate (BREATHS per minute) was at 20...tonight as I write this, the machine is only assisting with giving him with 14 breaths per minute, the rest of it, he is doing on his own. He still is getting pressure assistance from the machine to help keep the lungs open, but once the rate is down to 10, the plan is to start weaning the pressure as well. After that, we are hoping that in the next few weeks, he will be able to successfully come off the life support/ventilator...for good.
Today was his off day for his narcotic weans....but they did start weaning on another medication, milrenone... this helps make his heart contract more effectively. Now, it appears he will not be needing this much longer either. In a few days, we are hoping this medication will be gone forever also, and when this happens, he will be able to have the PIC line removed from his left leg. (It's been in since he was 2 days old).
Yesterday, Benjamin also started a new therapy with Renee. He got moved into his boppy. This gave him a completely different view on his room. It is quite a production moving him with the breathing tube still in him. They have to keep the tube in place and even a 1cm movement could be bad news..but it is doable, we just need a few extra hands to get it all done. He also started getting pedialyte introduced into his feeding tube yesterday, at the rate of 1ml per hour. That's only 1/5th of a teaspoonful over the course of an hour! Since he tolerated it so well, they actually replaced the pedialyte with breast milk...Yeah, he is finally getting the good stuff!! Although, from how quickly he is growing, you'd never know the difference. He is definitely going to be a big boy. At last check he was almost 12 pounds and almost 25 inches tall.
One concern that has surfaced in the past few days is a condition called nystagmus. It basically means that his eyes, particularly the right one, is wobbly when he looks around. They are unsure if this is a result of the narcotic wean or if it is a result of the brain bleeds that he had. Either way, this is in my opinion, a small issue. He has been through much more difficult times than this and beaten all those obstacles so far, so I believe he will be able to overcome this as well. Of course, this will also require intervention from GOD as he calling all the shots...Benjamin just relays what the results are to us.
Benjamin is definitely making moves in the right direction...Emma has already said several times how all she really wants for Christmas is to have her baby brother home. She made me cry yesterday when I was trying to probe her for what she was going to request from Santa this year. Her response was that she really didn't need much of anything, as she already has plenty of toys. She did say it would be nice if she got surprised with a few new things and then suddenly, she burst out..'Mom, I just had a great idea pop in my head, wouldn't it be great if Santa could bring Benjamin home for Christmas?!?!' That would be a wonderful Christmas miracle.....and the only present any of us would ever need for Christmas again. As I close this, I am hopeful for Emma's (and our) Christmas wish to come true, so our family can be where they should be at Christmas, at home...all together. This year, if that happens, there won't be words strong enough to express the emotions, but if he needs more time to recover, I'm OK with that too. I just think this Christmas would be so wonderful having all of our babies here with us and I believe either way, Christmas will be a celebration of the TRUE meaning this year.....more than any other we've had. God Bless and Love you all.....Kelly