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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.

Sunday, July 18, 2010

It could always be worse.....

It Could Always Be Worse: A Yiddish Folk Tale.........
A poor farmer is distressed by the fact that his house is too crowded and seeks the help of his Rabbi. The clever Rabbi tells him to bring a chicken into his home. The farmer questions the rabbi's advice but begrudgingly does as he is asked. Each time he goes to the rabbi, he tells him to bring in more and more livestock from his farm. Towards the end of the tale, the farmer tells the Rabbi he cannot take it anymore and he is going crazy. The Rabbi finally tells the farmer to release all of the animals from his home. The farmer does this and cannot believe how much better, less crowded, and peaceful his house is and thanks the Rabbi..........It could always be worse........

When I was in my early twenties, I had a really shitty car.... I nicknamed it shitty shitty bang bang. It would break down at least once a month. I was trying to go to school full time, worked three jobs, had no health insurance, and still had trouble paying my rent etc. My car broke down, again, and I had to take the bus to one of my jobs, again, which took about an hour and 45 minutes with about 3 different bus exchanges and while I was sitting at one of the stops I started thinking about how miserable I was and how horrible my situation was, and how everyone else my age had a running car, had parents who were able to help them pay for college etc. I looked up from my little pity party and I noticed a man who appeared to be homeless. I had to do a double take as I realized that this poor man, had no nose. Yes you heard me, no nose. He had clear tape over two holes where his nose was. I couldn't believe this poor mans plight. I thought that he must have burned his nose so bad from years of sleeping outdoors that maybe it burned off. The bus came and I had to get on. My heart sank. Here I was feeling soooooooo sorry for myself and my situation but hell, I still had my nose. I felt about a centimeter tall if that. I think I cried the rest of the way to work. All I kept telling everyone was that I had a nose. Everyone thought I was nuts but all I knew, was from that moment on, that you never have it as bad as you think, and that truly, it could always be worse.

The NICU has been a strange experience. There have been moments where it is very hard to maintain that "it could always be worse" attitude. It makes it even harder when your kid is one of the only ones who is still needing oxygen 6 weeks after his due date(most kiddos either go home by then or they only have some minor eating issues). My kiddo will be going home on oxygen there is no question about that. He may need it for a very long time. We will have to sequester ourselves for a year, maybe even 2. He will need a ton of therapy, no question about that either. And we still have no idea when he will come home and we don't have a ton of help nearby so to try and keep up this NICU lifestyle will be pretty grueling..... But, it could always be worse. I met a couple of preemie moms online whose babies are still on the vent because their babies lungs are actually worse than Thurston's. One mom has been unable to hold her daughter for almost 3 months could always be worse. Another preemie moms baby just passed away in her arms.... it could always be worse. A week after Thurston was born, I read about a mother who had a full term baby but caught a staff infection and who almost died, but they had to amputate her arms, and her reaction to it all" I am just so happy to be alive to be able to watch my children grow up" could always be worse.

The other day, I was talking to a very lovely nurse about a friend of mine who had a late term preemie, who never had to go to the nicu, but has had some lingering issues here and there with her child and how badly I felt for her. The nurse looked at me funny and said,"wow, how can you feel so bad for someone who has not gone through anywhere near the experience that you have gone through". I told her that I think an experience like this can either make you one of two ways, either more empathetic toward the plight of others, or you can think, "well my experience has been "worse" than anyone else's so their pain and sorrow doesn't matter as much as mine". I think this has made me much more empathetic. I told her it doesn't really matter if your child has been in the nicu for 1 day or 100, It is still painful any way you slice it. I just don't want to be that kind of person that thinks someone else's fears, anxieties, and sorrows are any less significant than mine, that life is some kind of "pain" and "hardship" competition to see who has suffered more, or turn into that parent who tells her kids "I had to trudge through 20 miles of snow uphill to get to school" etc........ To me that would not make me a good person, just a bitter one.

So I am ready to put down my proverbial violin, relish the fact that I am able to wrap my arms around my daughter, son and husband, touch my nose, look up at the roof over my head and think to myself, "it could always be worse".

Monday, July 12, 2010

"Breast"fast of Champions.........

Today was a HUGE day for little man and for our family.......

First, it was the first time in 127 days that my sweet baby was able to drink milk from my breast. Because of his high oxygen needs, he was unable to drink orally and all last week he got a chance to take to the bottle. He did fairly well drinking about half a feeding worth of formula/breastmilk. Well today was the first day they allowed me to try and let him feed from my breast. I had to use a nipple shield so that he could grab a hold of it as his suck may not be that strong, and boy oh boy did this kid take to my breast like a champ. He was high satting the entire time, sucking, swallowing and breathing awesome, and completely relaxed as a noodle. He nodded off a bit on the left breast, and switched him over and he sucked right away on the next without skipping a beat. WOW.....cant believe we had to wait so long for this moment. Hope he keeps this up cause let me tell you, I would LOVE to eventually feed him full time this way. Only time will tell but we are off to a great start.............

Next on the agenda was later that evening. Because Viola is on a delayed vaccination schedule, they will not let her back into the NICU so my sweet daughter and sweet son have never even met each other. 127 days without ever even laying eyes on each other.....well that all changed tonight. She knows who he is, she sees tons of pictures, she asks about him all the time, and just this morning she actually said "Mommy, I want Brudder Turstin come home".....awwww my sweet angel. So the director of the NICU arranged for Viola to be able to see Thurston through the glass of the door when you enter the NICU. It is a HUGE production, especially since he is still on oxygen, they had to jump through some hoops but boy was it worth it. We took video and pics, and Thurston was pretty upset the whole time poor guy. He just doesnt like change too much(must get that from daddy :)) but yea, it was a good day, the light at the end of the tunnel is getting a little bit closer each and every day....

Saturday, July 10, 2010

SURVIVOR NICU: OUTWIT, OUTPLAY, OUTLAST..18 weeks actual, 6 weeks adjusted....

So I have been so enjoying my son lately. He is now a month and a half old, and because my mom has been here, I have been able to go up to the NICU and spend oodles of time with him. Because of this I have also been able to notice NORMAL things. That is one thing about having a premature baby, you sometimes get so caught up in the ABNORMAL things about your babies prematurity that you forget that he is first and foremost, a baby. When I taught my students who had different abilities, we learned something called "people first" language. In other words, you define the person before the "disability". For instance, you don't call someone who has Down syndrome a Downs baby, you say, a baby with Down syndrome. But most people including myself refer to a baby who was born prematurely as a "Preemie" and with that comes a ton of connotations, images, and assumptions of just what that means.

This week I was able to notice so many wonderful "non-preemie" things in Thurston. I have brought in a ton of toys for him and I jingle them on one side of him and he turns his head toward the sound, looks at the object and then tracks it as I move it alllllllllll the way over to the other side. So not only is he hearing, but he is able to visually track with his eyes, and he is also able to move his head from one side to the other. I was so tickled that I laughed out loud and said "oh look at you, you are tracking, what a great milestone you have hit". I then looked up to see a nurse looking at me. She didn't have to say a word, it was all in her face. I looked at her and said , "oh but I know that he will still have issues". I cant even believe it. I cant believe that I wasn't even able to enjoy that little moment, that very normal moment with my son and retain that little ounce of hope in my heart that he could very well be......dare I say it......NORMAL.

You see since day one, everyone has been convinced that my son will have cerebral palsy, I will say it out loud since some people will only say it with their looks and obscure monikers they have come up with. They have called it by many other names like "challenges" or "issues" or "he will need some help" or I love it when people say to me "It is great that you have special education experience" (thats my favorite one)etc. Even though his brain scans so far have been clear, they still fully believe deep down in their hearts that my son will be "challenged". Its almost like a self-fulfilling prophecy and I fear that if he stays in the NICU much longer, they will "will" him right into submission and downright cause him to have something "wrong" with him.

They have had me convinced as well. They convinced me that he wasn't going to make it outside of my womb, they convinced me that he would die within the first day of life, they convinced me he would die after he coded on the third, they convinced me he was going to die after he was 4 weeks old and had very little good lung tissue left, they convinced me that they were positive they would find some type of brain damage after his first, second, third etc. brain scans, they convinced me that he had a high probability of being blind and deaf, could be wheelchair bound, cognitively name it they have given me every worst case scenario they could vomit at you, and gave it to me with so much conviction that I am surprised their eyes haven't popped out of their heads by now!!!

Guess what my son has done to all of their crystal ball predictions......He has outwitted, outlasted, and outplayed all of them. I am tired of trying to appease them, it should quite frankly be the other way around, my son and I are the customers after all. I am entitled to enjoy the fact that my son looks and acts NORMAL, that he clasps his hands together, that he can prop himself up with his forearms, lift his head up and look in the mirror at his handsome self, that he eye gazes right at ya, that he tracks and moves his head from side to side, that he seems for all intensive purposes, like a normal newborn, not like a non-people first language "Preemie". I am tired of tempering all of this excitement with an "oh but don't worry everybody, I know he will have some, "issues" "challenges" "problems" "delays" etc. Why cant I believe that in the end, everything will be OK. Isn't that the definition of hope. My son IS the ultimate survivor and he deserves the million dollar prize.....a mother who never gives up on him nor on his chance at having a "normal" life.

Sunday, July 4, 2010

Happy Days are Here again.....17 weeks actual, 1 month 1 week adjusted

Happy days are here again
The skies above are clear again
So let's sing a song of cheer again
Happy days are here again

Altogether shout it now
There's no one
Who can doubt it now
So let's tell the world about it now
Happy days are here again

So today was a very good day, a very good day indeed. First of all, my mama is here. With her here, I really wonder how we have been holding up all this time without any family around. Family lifts you up. Not just physically, by helping around the house, cooking, cleaning, helping with Viola etc. but there is something about your family that just the sight of them helps you on this deep down emotional level, that just by looking at them, you know everything is going to be ok. Anyone that has been through a time of crisis and has family around them on a consistent basis, are truly blessed and extremely lucky people. Even though my mom is only here for a very short time, I truly feel like I have won the lottery. Its just what we needed and hope that it will help to carry us forward after she leaves. You just never stop needing your mommy!!!!!!

Today also was the first time in 3 months that Chad and I were able to be with Thurston together. It was beautiful to be able to enjoy our son together, especially now that he is so much older and healthier and interactive. So that was extremely special for us.

Yesterday was also very special as Ama was able to meet her grandbaby for the first time. When we walked in she had mentioned she saw something going up his nose and I thought she was referring to the nasal cannula. I actually had to do a double take as they had put his ng tube up his nose instead of down his throat. It totally threw me off because that could only mean one thing.......he was going to be completely weaned off of the cpap. Well not only did the doctor tell us that but they wanted to try giving him a bottle. WHAT....I had not expected this as they usually only try bottle feeding when they are down to 2 liters and Thurston is on 5 liters. The doctor explained "Thurston is not your normal preemie, we need to bend the rules with him".....AWESOME!!!!!!!! I say!!!!!

So today, the nurse gave him his first bottle and he passed with flying colors, just gulped it down like a champ. 15 ml which is about half and ounce. We took a video so if I ever figure out how to load stuff up I will post it later this week. Chad and I both cried. This is the light at the end of the tunnel that we had been waiting for, a very long tunnel, but a light nonetheless. It has been so hard for me to talk to other NICU moms as it seems all of their kiddos, no matter what their gestation they were born, and weeks later after Thurston, they are all on low oxygen and starting to bottle feed, that is the one of the first indications to a nicu mom that her child could be coming home soon(and soon to us could mean another couple of months but HELL, to us thats amazing considering what we thought could be another 5 months). This has all happened so fast that my head is spinning, I just never thought that we would see this day. Now Thurston's oxygen is still pretty high, he is still needing 50s/60s, but like the doc said, Thurston gets to bend the rules a bit. It does seem the steroids are helping a bit, not as fast and much as of course we would like, but I have even noticed that his breathing doesn't seem as laboured as it has been, so I just so hope we can continue on this upward spiral, however slow it travels.

When I asked the doctor today how much oxygen Thurston would have to be on to get him home, he walked over and turned his pressure from 5 to 4. He said lets just see how he tolerates that and we will go from there. He could go back to 5 but I am just ecstatic at all of my son's progress these last few days.

Its nice to have my mommy here, its nice to get some good news from the docs, its nice to see my sons progress a little, its nice to finally feel that happy days are here again.

Thursday, July 1, 2010

Breathing lessons.....17 weeks actual...4 weeks adjusted

So before I update everyone, I thought I would explain some terminology for everyone to understand, especially dealing with Thurstons lungs as this has been one of his biggest obstacles to date. And if you are a medical expert, feel free to correct anything I am saying, as this explanation is filtered through my rather scattered and disorganized brain :)

We breathe in 21 percent oxygen and if we are breathing that 21 percent in correctly, our blood saturation should read at around 100 percent. Our saturation changes when we run, if we are ill etc. Anything that basically impedes our ability to breathe in enough oxygen.

So Thurston's saturation levels are set between 87-94 percent(instead of 100 percent). They keep the saturation levels lower on him for many reasons(so his rop does not progress, to try to wean his oxygen levels down etc.) Because Thurston has BPD(I will explain this in another post) due to both his prematurity and from being on the vent, his lungs are damaged and that damage has caused inflammation and cannot hold as much oxygen as normal lung tissue can. So his oxygen percent runs much higher than 21 percent in order to give him enough to keep his saturation levels up. Right now he is needing anywhere from 40 percent to as high as 80 percent oxygen. The goal here is to get him down to needing only 21 percent, then he can lose all of the oxygen and just breathe in normal air like you and me.

The other complication here are the different equipment that administer the oxygen. At first, Thurston actually needed a vent, which pretty much breathes for you as his lungs were so immature, he was unable to breathe on his own. We were able to wean him off of the vent and onto a cpap which kind of helps him breathe by inflating his lungs.... for example giving him 15 "breaths" a minute etc. Now he is on High Flow nasal cannula which gives him oxygen at a high pressure which helps to push the oxygen into his lungs. Thurston is breathing on his own but is getting alot of extra help. Next is to try and get him down to a Low Flow to where he is really getting just some extra oxygen, kind of like someone who has emphysema that you see walking around with an oxygen tank. Once he gets on 2 liters of low flow he can actually start eating orally with a bottle/breast and this will be the next step in getting this poor kid home.

Right now he is on 5 liters, or high flow and he has not been doing great on it and still needs 50-80 percent oxygen(again 21 percent being the goal to move to 4 liters, then 3 liters, etc.) to keep his saturation levels between 87-94.

He is now 4 weeks old adjusted, a one month old baby, who is missing out on a TON of development by still being in the nicu. The longer he stays there, the more at risk he is at of falling further and further behind. The longer his oxygen stays high, the more likely he will need a g-tube to feed him(after a while babies lose the ability to suck and swallow and will need a ton of help later on if they don't get practice)a ton of physical and occupational therapy, not to mention intellectual delays from not being stimulated like a normal baby should. They do everything they can at the hospital and Chad and I go as often as we can, but with no family here to help us out, it is just not enough. I am also a firm believer that neurons are formed even just by holding/breastfeeding, smelling from a baby/mother closeness perspective so he is missing out on the 24/7 that I would have given him if he had been born full term or even if he were like most "normal" preemies who usually go home around their due date.

so having said all of this, the doctors thought they would try giving him another round of steroids. He had one round of steroids at 4 weeks old(I will regale you with that story when my mommy comes and I can backtrack for you)that got him off of the vent and on to cpap. So it was successful. The steroids basically are an anti-inflammatory drug and by decreasing the inflammation in the lungs, it helps the lungs to hold on to more oxygen, thereby decreasing his oxygen needs. It is not without its risks, as pretty much EVERYTHING during this entire process has always seemed to be the lesser of two evils scenario, but we all felt that the benefits(getting his oxygen levels down which will eventually get him closer to going home)outweigh those risks. We are not sure if this round will do the trick so we have to wait and see and if in a couple of days it does not seem to be helping they will take him off of it and then we go to plan B or C or D etc. So please pray that it works!!!!!!!

Thurston is now over 6 pounds a little chunk!!!! One of the nurses calls him her "fat daddy". We LOVE that nickname. He is really acting more and more like a newborn. He looks at you and his environment. He is not really smiling yet(just those passing gas smiles) and again, he might develop later than most kids but when he does crack that first real smile, you all will be the first to know and we will have a huge gigantic enormous picture for all of you to see. I will also be posting more photos and backlogging here as my mommy will be arriving in Austin tomorrow. We cant wait to see grandma or AMA as she likes to be called and it will be the first time for her to meet her grand baby so I know she is very excited as much as we are. Hell, I feel that once she gets here, that I can finally breathe a little better myself !!!!!!