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Saturday, July 24, 2010

Dr. Strangepreemie: or how I learned to stop worrying and love the NICU...21 weeks actual(5 months, gulp), 8 weeks adjusted

My little man hit 7 pounds finally 7.8 pounds to be exact.....yea he is now at that newborn weight, the big 7!!!!!! He is also 18 inches long, so not quite as long but he will get there. He now can almost fit into newborn clothing without drowning in them. He is my little fat daddy. The next great news is his ROP is resolved. It is zone 3 stage 0 which is fantastic. Last I heard his next appointment will be when he turns 9 months old YEEEEEEHAAAAAAW. This doesn't mean he may not need glasses, but it definitely means that most likely, he wont have any major vision issues.....whew we just dodged another bullet in the life and times of the IUGR preemie world. I remember sitting down with the doctors in the beginning when they were explaining that Thurston was at such a higher risk than most preemies because of his IUGR and I sat crying, begging her, that I would pay for someone to come and and check his eyes on a daily basis as I was so fearful that on top of everything else that he might be blind....Oh I am so glad those days are over.

Ok now the lung part. At first it seemed as if Thurston was rebounding from the steroids, and they had to up his liters a bit on his oxygen. Then the next day, Dr Maverick(that's just what I call him) decided to try something different. He put him at 1 and a half liters at 100 percent oxygen to see how Thurston does. If he does well he might be able to come home on some heavy duty oxygen equipment, a part time home health care nurse, an ng tube and a but load of medications, inhalers etc. Hmmmmmmmmm not sure how I feel about all of this, a part of me is scared shitless...what if he gets really sick, stops breathing, what if the machinery malfunctions, how am I going to be able to handle two kiddos all day, one whose medical needs probably equal that of 10 newborns and what will this mean to Viola, and we won't be able to go anywhere, sequestered in our house with daddy gone until very late at night(oh yea it's crunch time at work) gulp and more gulp. Of course the other part of me is thrilled at the prospect that he could actually be home in about a month or so, but as a lot of people say, never trust a preemie, so if he doesn't tolerate this new change, well let's just say the nicu could possibly be our permanent residence for quite sometime.....

Early on, it wasn't as hard to leave Thurston at the hospital. He was in this tiny incubator, clinging on to life, or on a few occasions, clinging on to death. It made it a little easier knowing there was nothing I could do for him outside of pumping milk. We were not allowed to hold him, and we were extremely limited to touching him, talking to him, singing to him, and anything else that would overstimulate him. Plus you are in such a state of shock, that you really are not capable of making any decisions anyway, literally, it was just easier to leave it up to the doctors.

I really also was emotionally detached from my sweet little man. After someone tells you that he is not going to make it outside of your womb, that he is going to die and you will never get to see your child alive, your mind has a way of detaching itself, to deal with the pain. I remember doing this on three occasions during his nicu life as well. The first time I laid eyes on him(you just cant believe that this little tiny baby could ever survive), on the third day when the nurse practitioner came into my room and told me that he had coded and they had to bag him to keep him alive, and on the 4th week of his life, when the doctor sat us down to tell us that he was on the highest amount of life support humanly possible and that he may not make it through the night.
After about 2 and a half months I finally began to hope and believe that my little man was here to stay. I was talking to my best friend the other day and she said she knew that I had crossed over that bridge when I started my blog and posted it on facebook. She knew that he was out of the woods.
Having said this, I think I have conversely been in denial as well for a very long time about how sick my little man was/is. At 24 weeks he was only 11 ounces, or 369 grams. He was the size of a 20/21 weeker....the statistics of a 24 weekers survivability was grim enough, but Thurston, had he been born at that point, well, as the doctor said, they just don't make tubes small enough....The doctors, although they don't mean to, also remind me of just how sick Thurston was, and statistically, just what they expected out of him. When the doctor was telling me that Thurston's ROP was resolving and at the least scariest stage you can get(zone 3, stage 0) he looked at me and said, "quite frankly I am surprised". Seriously, when I am telling you that the doctors expected this kid to not only not make it, but to have every serious problem that a preemie could have(blindness, NEC, Brain bleeds, Cerebral Palsy and PVL(still wont know for some time), hearing loss(we have no idea about this one yet as his o2 is still too high to test him), I am not exaggerating. The doctors at every stage have seriously and incredulously been completely shocked at his progress, that's how sick this kid was, and the fact that he is doing as well as he is so far(barring the lung issues) is truly miraculous.

Most preemies go home around their due dates, give or take a couple of weeks for example if your baby was born at 31 weeks it is reasonable to expect your baby will be in the nicu for approximately 9 weeks etc. When Thurston's due date rolled around I thought to myself,"well in reality, he was really kind of like a 23/24 week old baby, so if I add 3 or 4 weeks on to that expectation that is reasonable", so I figured ok, maybe he will be home by the end of June, or early July. Then when he wasn't even off of the cpap by then, and had not even bottle fed yet, I thought, "well, he was really really sick, he was not a "normal" preemie, he was stressed in my womb, he wasn't getting the nutrients and oxygen he needed, his body shut down to spare his brain and heart, he had very little amniotic fluid, I guess it is reasonable to think that he will just need a little more time to recover".

Before the doctor began trying him on this new "experimental" oxygen regiment, Chad and I were talking the other night about some other solutions if he needs to be in the nicu maybe 4 to 6 more months, maybe even longer. He said "maybe we could sell our house, and move into a rental closer to the nicu", maybe sell one of our cars, have him buy a scooter, and that way we would save a ton on gas, driving back and forth, and we would be able to go to the nicu anytime, day or night, if we could find a solution to our other issue of trying to find care for Viola. We were already on a fixed income before this happened and for us to put Viola in daycare all week would mean we would have to cough up some major if I was working that would be all fine and dandy but that would defeat the purpose of me trying to see Thurston more..... we were in essence, grasping at straws. We have had a few strands of good luck lately as Chads wonderful Brother Brad and his boyfriend Juan are in town and have helped out tremendously. My dear friend, Johanna took Viola for the entire week before that, and my wonderful friend Ja"nut" is coming out to help us next week. You will not meet more grateful people to have all of these wonderful loving people in our lives. I am actually going to write a post soon thanking all of the people that have helped us along the way but was going to save it for after Thurston comes home. That way we make sure we don't leave anyone out!!!

They say there are 5 stages of Grief


As I look back, especially when I read my blog, it is funny how I see each stage, some I went back and forth in between etc. but I think I am finally at the part where, you just realize, this is my life. There is no going backwards, only forwards and you face each day as it comes. I have accepted the fact that he has a chronic disease. I have accepted the fact that he will have a lot of medical issues to face when he comes home. I have accepted the reality that our son was born prematurely, and I am ok with all of that. I finally have accepted the fact that he might need to be in the NICU for longer and that we just need to find a way to keep up this crazy lifestyle until he comes home.
So I guess I reached that latter part of grief and not only that but I feel unbelievably lucky...And as much as it pains me that my child is still away from us, I need to be eternally grateful to the doctors and nurses who have saved my child. After all it is not their fault Thurston was born early so I guess you could say that I really have learned to stop worrying and love the NICU.


  1. It really is a cozy place to be just you and your sweet baby... a place where you can leave your worries at the door, walk in (run in) to see a sweet smiling face waiting for you. Acceptance...

    I love reading your blogs Donna, I love getting to know Thurston through them. You and Chad are amazing and very strong. I am inspired by your strength and dedication.

  2. So happy to hear our boy is gaining and growing, and that his eyes don't seem to have any issues...we are just waiting and praying for his little lungs to mature and heal so he can come home. And your Mommy will be there when he does. xxoo