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Saturday, March 13, 2010

The good, the bad and the ugly.......

I am going to encompass almost a month and a half into one post just to catch everyone up(I started writing this blog about 2 months after he was born) and also, because I don't remember everything so clearly, I was truly in a depressive mess. Thank goodness Chad's parents were in town helping us for the next few weeks, and my beautiful friend Karen came for 2 weeks after them to help us out. I just don't know what we would have done without them. His dad single handedly re-landscaped our front and back yards and his mom just took care of everything else, I just love them so much. And my friend Karen gave up so much to be with us and just helped with everything and gave me my hippy cow pow back!!!!

So the first month of a micro-preemies life is pretty daunting. I don't even think they weighed him much as they were trying to ensure his survival. He weighed 1 pound 4 ounces at the time of birth and I didn't even really want to know how much he had lost after that, he might of very well dipped under a pound. I think he was breathing on his own at first and his apgar scores weren't horrible for a 1 pound baby, but I vaguely remember them telling me they had to put him on the vent as he just needed a little more support. I remember I couldn't see him until a full day after he was born as I wasn't allowed out of bed because of my c-section. When I finally got up, they took me in a wheel chair dressed in that oh so beautiful hospital gown, doped up on morphine(a sight I have now seen so many times over after being in the nicu for 6 months, yet it still sends shivers up my spine even to this day). They had put Thurston in this little room because at that time he was the sickest baby there and they wanted to isolate him(some would argue he is still one of the sickest babies there poor little man). I remember them lifting the cover off of the incubator, and there he was, tiny, isolated, wearing these little sunglasses, with a jaundice/biliburn light shining down on him as though it were a spotlight, showcasing all of his fragility. I sat and balled, I couldn't even believe that was my baby. I remember thinking how in the hell did this little tiny person survive, how will he survive, how did they make tubes small enough for his airway, how did they intubate him, it was just surreal, and I do remember emotionally pulling away from him, a horrible thing for a mother to do, but I didn't want to believe that this little man could be OK, he just looked so sick, so fragile, so helpless.

Anyway, at first they were able to give his nutrition through his umbilical cord which I thought was fantastic as they did not have to put any IVs in him the first 9 days or so. That was the other thing I remember, just having to consent to a million things in the first few weeks of his life and allllllllll of the risks associated with it. You have to consent for a arterial line, so they can draw blood and not have to poke his tiny little feet a million times over(called a heel stick) so they can test for a million different things and monitor his blood gases(oxygen and carbon dioxide levels), we had to consent to blood transfusions(I actually lost count at how many he has had but I am pretty sure it is well over 20, which is a lot even for a micro preemie because he just lost so much blood and he was not oxygenating well on the oscillating vent), we had to consent to a central line that gave him tpn(total parental nutrition)because after they could not use the umbilical cord anymore, he had to be given nutrition somehow and he just was not stable enough to take anything by ng tube yet(nasogastric) down into his belly. Everything is a double edged sword in the NICU. Obviously if your kid wasn't getting nutrition, well, they would not survive, but the central line could have punctured a vein leaking nutrition in parts of his body that could kill him, and there is also a risk of infection getting into his body. Same for the arterial line. Blood transfusions could be tainted and cause any number of diseases, the list is endless. As parents introduced to this process, it is dizzying putting it mildly. There is also all of the medications; diuretics, antacids, antibiotics(at one point they thought he was septic and they did an lp or lumbar puncture or spinal tap on him to make sure he did not have meningitis ), pain medications, apnea medications, sedation drugs, dopamine, steroid treatments, supplements, nebulizers etc. Its just too much to list here not to mention all of the million xrays that he has had. Around week 2 I think his PDA(patent ductus arteriosus) was open(extremely common in preemies) and they had to give him basically what is ibuprofen and they told us if that did not work, they might have to close it surgically, another "whew" and hurdle jump for Thurston as his PDA closed with the first round of medication and for as sick as he has been, this kid continually jumps through almost every single hurdle you can think of so far(outside of his lungs). There is also all of the medical equipment, the incubator or Giraffe, the leads which are hooked up to measure his heart rate and lung rate, the pulse oximeter to measure his oxygen saturation, the oscillating vent, the regular vent, the cpap, the terminology and acronyms are endless: bpd,pda, cld, desats, EEG, apnea, bradycardia, hmf(human milk fortifier), hematocrit, LP, NPO(nothing by mouth)tpn, surfactant, NEC(necrotizing encrolitis)...just so many terms I cant even begin to name them all; they have become second nature, you really feel like you are in the first year of medical school.....anyway, you feel like a deer in headlights, like a zombie, all of the medical terms, risks, coming at you at the speed of light, it was hard to weigh the odds, you just had to really rely solely on the doctors and nurses, you nod your head yes through your tears like one of those bobble heads you put on your car dash. It hurts tremendously just thinking of those first few weeks.

After he coded on the third day, Chad and I pretty much demanded to know what to expect, what other issues Thurston might face, and what his chances of survival were at this point, I think we mistakenly thought he was doing OK the first couple of days but we came to find out that that was considered "the honeymoon period" where a preemie doesn't realize he is out of the womb, sort of, and after a few days, he says"what the....." Anyway, one of the Doctors took us into a room and told us that Thurston was very very very sick. She explained that because he was IUGR(intrauterine Growth Restricted) and was more like a 22/23 week old baby but even worse because he was stressed in the womb that his chances of pretty much everything a micropreemie could face was ten fold that of a "normal" micropreemie . She explained his chances for cerebral palsy were greater and they expected to find brain damage on his ultrasounds, he might not walk or talk, he could be deaf, and he was at a much higher risk for ROP(retinopathy of prematurity) and blindness. We asked her to explain what ROP was and she said that there was an eye doctor that comes in once a week or every two weeks to make sure that the disease doesn't progress and she said sometimes it progresses very quickly...I stopped her in her tracks and said,"please please I will pay the eye doctor to come in every day, I just don't want my son to be blind", my desperation at hearing all of these horrible things that Thurston could face was just too overwhelming. Chad and I told her that we were OK if and when they thought that he was just suffering too much that we would let him pass away. We just couldn't take our sweet little boy suffering this much. She said that we were not at that point yet but they would let us know. We walked out of that meeting completely dejected. I just couldn't believe this was happening to me, to us, to our son. As much as I was happy that he made it, I often thought maybe it would have been better if he had passed away in my womb. You think of a lot of things during this process. The good, the bad and the ugly.

At another point, a nurse practitioner, the one I call Dr. Strangelove, pulled us into a room and told us that his head ultrasound was clear(probably a week into his life). He reiterated cerebral palsy to us and said he fully expected that at around 6 weeks, when they do another head ultrasound, that they would find some sort of brain damage from the stress in the womb, and from his latest coding episode. I just told him that I used to teach a class full of students who had severe cerebral palsy and I adored every last one of them and we would just face it head on if that was the case. But deep down I was horrified, petrified, it is one thing being the teacher of a student with cerebral palsy, but being a parent, well that was a different story. I saw what those parents went through, yes of course they loved their children, but their lives were full of unbelievable hardships, and it gets harder and harder the older they got. I thought that if it became too difficult we could put Thurston in a group home. Many of the parents of the students did this and I NEVER EVER EVER judged them. I thought it was the best of both worlds. The parents could visit them every day, the kids were getting their physical and medical needs met, and the parents could take them whenever they wanted, on vacations, Christmas, holidays etc. Anyway, I continually kept trying to prepare myself for the worst case scenario. It was, at that time, the only way I could cope. Chad, on the other hand suddenly became the worlds biggest optimist. He continually told me, "He looks normal Donna, just little" I wished I could have an ounce of Chads optimism, Chad singlehandedly carried the both of us during that very dark time. He truly is my hero and my love and respect for him has grown infinitesimally during this process.

That first month and a half I cried every hour on the hour. I cried myself to sleep, I cried as soon as I woke up. I remember going to a park with Viola and my in laws, and I was still recovering from my c-section. That was my first outing and I cried the whole time. It was hard to see other people going on with their lives, with their healthy children. It was so hard to see pregnant women. When we got home, for some reason all of my neighbors were outside. No one had seen me yet, my in laws and Chad had done a very good job at sheltering me. I walked out of our van and turned around. Everyone was looking at me, with their faces of sorrow. I wanted to talk to them, run and hug them but all I could do was burst out crying and ran into the house. I just couldn't face anyone. Chad again saved the day and went out to talk to them. All of them of course understood(we truly have the best neighbors ever). That was truly the most god awful month and a half of my life. I didn't ever think I was going to make it through. I am sure there is a million things I left out and it seems like such a garbled mess of the first month or so of Thurston's life but there you have it, the good the bad and the ugly of it all.

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