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Thursday, October 21, 2010

Curb your enthusiasm........

I know its been a while but so much has happened and Thurston is still always on that roller coaster, we just cant seem to get a break when it comes to his stability, I just didn't feel much like writing because things just change too quickly. I have also been depressed on top of being severely sick(all three of us caught what I can only assume was the plague) and we also had a theft from our home so its just been a hard couple of weeks.

The hardest and most depressing thing for me that happened actually happened to a friend of mine(well two friends of mine). I met her through a preemie group and we have been going through this very hard roller coaster together when we first emailed each other over 6 months ago. Our babies were due around the same week in June and without going into details, her baby who was still in the NICU, just passed away. My heart is breaking as I write this. To go that long, to fight that hard, and both her and her child and her family have been through more than anyone can ever imagine, including me, and to have lost her sweet dear baby brought me to my knees in tears. She was part of a trio on that message board, referring to ourselves as the three amigos. The other mom of that group also lost her baby a couple of months ago. These ladies were and still are my rocks. They are stronger than I could ever hope to be. I love them with all of my heart and they remind me everyday how lucky I am and there is no room for whining or complaining on this journey when so many other people have to endure so much pain and loss. My heart is still breaking for both of them and I will never forget their children and hold them very close and deep in my heart forever.

On the Thurston front, I will go back about a week. He seemed to have been doing ok oxygen wise after his surgery maintaining at 6 liters at around 80 percent oxygen. But in a matter of a days, he climbed up all the way to 10 liters. We are very lucky that Dell has the ability to administer CPAP like pressure through the nasal cannula as it is so much more comfortable for Thurston and 10 liters truly is equivalent to him going back on the CPAP. They actually did put him back on the CPAP for a day but he just didn't tolerate it very well and kept taking it off as he is just too big now and can manipulate everything with his hands. They were THIS close to putting him back on the vent but the doctor did not think it would do much good anyway. Thurston is still an enigma to everyone. He still does not present like a baby who has a severe case of chronic lung disease( oh he has a pretty hefty case of it believe you me, but it just isn't as severe as his saturations shows). His respiratory rate is still very normal. He does not look like he is struggling to breath but yet his saturation dipped into the mid 70s and that is not good for long periods of time. Finally the steroid question popped back up on the table. This would be his 4th round of Dexamethasone which already has its risks but we always seem stuck, like we have to ask ourselves. "we either risk the dexamethasone, or risk him dying" Those pretty much have been our two options with Thurston at least on 3 out of the now 4 occasions we have used it on him. The good thing about the steroid is the bigger the baby is and the older, the less the risks of the steroids use. Doctors were using it on neonates when they were first born and for 2 to 3 months straight at high dosages in the 1970s and found out that it caused developmental delays etc. So the new studies from what I have read(and trust me I have researched the HELL out of Dexamethasone as well as talked to Several mothers who have also had to use multiple doses whose kids are older now who seem to not have any ill effects from it) seem to be a bit more mild(slightly lower IQ and smaller in size) and when the choice becomes whether my son lives or dies, YES those are MILD risks trust me. There are never ANY easy choices on this journey, but when it comes to life and death, the choice HAS to be that easy.

So he started back on the Dex about a week ago and I know how giddy everyone will be when I tell you he is now down to 2 liters of oxygen at 80 percent. BUT WHOA NELLY NOT SO FAST. We have just been down this path before. The only other time he has been that low was in July, after his 2nd round of dex. It did last about a month until he aspirated in August and where we almost lost him AGAIN. So I am going to CURB MY ENTHUSIASM for now and wait until he tapers off of the Dex and stabilizes. We don't know where he will end up once he is off of the Dex and how far he might rebound back up to. They are also not sure that a tracheostomy will help/hurt him(the surgery and afterward is GRUELLING and at this point could be more harmful than helpful according to one of the doctors...again it does not cure him it just gives him a different port to breath out of). The other thing is I talked to the doctor yesterday and they had done a ct scan of his chest, his first ever. I know you would think for a kid that has chronic lung disease um why had they not done this before. Well he just always was too unstable. But the pulmonologist was pretty shocked to find that his lungs, albeit definitely showing scarring and showing lung disease, was no where near as bad as they were expecting. So they are now thinking that it might have something to do with his heart which is what the very first pulmonologist said when he first came to Dell. So now they are trying to schedule some further testing, a bronchioscope, which they just don't think they will find anything from that as they don't think it is an airway issue, and a heart catheter, which I am more nervous about as this is a risky procedure, but they think they might find something that is causing his saturation levels to constantly be low even though he is not breathing hard. They are also puzzled as his blood gases always look pretty good as well which is another thing they would NOT see in a kid who had very very severe lung disease. So I guess there are some pockets of good news, riddled with pockets of puzzles and mysteries that have yet to be solved.

In the meantime, we have been so sick that we have not been able to see Thurston in over a week. I can guarantee that this nasty nasty cold that has draped our house would have most definitely killed him, and I am serious when I say that. I was up last night thinking about how scary it will be when he comes home and how even just a small tiny cold, let alone what we just got would be life threatening to him. But then I stopped in the moment Donna, live in the moment. There is no sense worrying about what isn't yet. Gotta just keep living day by day, worry about only what I need to right now, keep the sanity going. So I will both Curb my enthusiasm but also Curb my fear too and just continue to plod along, trying to be strong for my son, daughter and husband, and be forever grateful that we are still on this path, however shaky and uncertain it may be.

I know Natalie

I know Benjamin

Sunday, October 10, 2010

postcards from the edge......

Sorry to give you whiplash but here it goes.......So as I was feeling pretty good about Thurston's recovery in the last post, this has turned out to be a very very very long and stressful week. I was already pretty exhausted from staying up all night Tuesday because Thurston was not given proper pain management, but Friday when I went into to see him the doctor called me right when I was going into the hospital and told me there have been some setbacks. I did not panic.....I am finally at a point of where I am able to do a wait and see before I react when it comes to Thurston. I walked up to his room and lo and behold he was under lockdown, with full on gowns, masks complete with a huge STOP before you enter sign. I knew right away that it meant that Thurston might have an infectious disease. I still did not panic....I was actually pretty proud of myself, I really am learning I am I am. I put on all the garb and went into see Thurston and to wait for the doctor for explanations. I took one look at Thurston thinking maybe he would look like the plague but nope, he looked completely normal, looking around, his color was great, he was satting pretty high 90s so I kind of thought, "well whats all the fuss about". Apparently Thurston had a huge coughing fit that morning and it was so bad that they thought it could only be one of two things; RSV or Whooping Cough(pertussis). The doctor looked at me with somewhat grim eyes and I almost wanted to laugh but held back. I said, "um I really really am not worried, Thurston looks really good, in fact better than ever. The doctor looked pretty relieved but said that they had to take every precaution, do some more testing and that Thurston would be on lock down until the results came in. They put him on an antibiotic that treats whooping cough and started swabbing away.

Ok so far so good right? WRONG.....well Saturday I went in and Thurston was having a horrible horrible horrible day. He absolutely could not be consoled at all and AGAIN I had to keep telling the nurse and pretty much anybody that walked by that I was concerned, what can they give him for the pain etc. I dont want to get into to much detail but I was again ignored, pooh pahed, and I started to get very very very upset. I felt completely helpless especially after the doctor finally came in and told me she would give some gas drops to help with the gas...WHAT...he is in pain. Finally Chad and Viola came(this was 8 hours later) and I lost my shit. Chad held Thurston and I took Viola into the waiting room, called my mom and just literally lost it. I think everyone heard me. The nurse came out of the NICU to check on me and I told her I just couldnt take it anymore. My son was in pain all day and no one was listening to me. Finally we all went back into Thurstons room and the doctor finally came back and was able to witness what we were talking about. Thurston was crying at the top of his lungs writhing in pain. She finally prescribed some morphine and did some xrays to make sure that everything looked ok.

Thurston was awake the entire day. He couldnt sleep, thats how much pain he was in, I was livid. Then right after the morphine sets in he conks out in my arms and then Respiratory Therapy comes in to give him his treatment. They put this mask over him to do it and I asked them if they could just do the nebulizer(maskless) and they said it isnt as effective. And here is where I feel like a horrible mother because I let them put the mask on my sleeping baby hoping that maybe he was so tired that he would just sleep through the whole thing, but he then wakes up in a panic and writhes in pain and I could only guess that he thought they were suffocating him, at least I think that is what it must have felt like. I was so distraught. I just couldnt believe they were doing this, why cant they just leave my poor baby alone. I was going to stay all night but I havent really slept much this week. The nurse on last night was amazing and I did feel that after he fell asleep again that he was in good hands and she promised me that she would call me if he ever got even an inch next to inconsolable.

Anyway, I went in today and he looked so peaceful and well rested. He was in no where near the amount of pain he was in and I finally talked to the director in charge and he said that all of these things will be fixed. There is more details involved and I am just way too tired to go into it but needless to say it is the opposite of carpe diem. I would rather not seize the last few days. Nothing is worse than seeing your baby in pain and not being able to do anything about it, feeling like no one will listen to you, feeling completely and utterly helpless. Im ok with him in the NICU when I dont have to worry about his well being and if he is feeling ok, I am not ok if that is not the case. This is a very draining expereience and trying to remain positive after over 7 months is exhausting in and of itself. I am grateful but also Chad and I are starting to become completely drained from this whole experience and we are starting to unravel. We are definitely living on postcards from the edge.

PS...Thurston does NOT have RSV and no one in their right mind actually thinks it is Whooping cough although they still have him on lockdown until the final results come back on Tuesday. WAnna know what I think? I think he was in so much pain that he started to hyperventilate and gag and cough on all of his saliva and tears. I think he just went into spasm mode. I wish I was there just an hour earlier I could have told them that. For now they think the pain appears to be both from sharp sharp gas or cramps in his lower abdominal area, and/or just a lot of residual pains from the surgery. I will update later I really need to get some sleep.....

Thursday, October 7, 2010

Carpe Diem

Tu ne quaesieris, scire nefas, quem mihi, quem tibi
finem di dederint, Leuconoe, nec Babylonios
temptaris numeros. ut melius, quicquid erit, pati,
seu pluris hiemes seu tribuit Iuppiter ultimam,
quae nunc oppositis debilitat pumicibus mare
Tyrrhenum: sapias, uina liques, et spatio breui
spem longam reseces. dum loquimur, fugerit inuida
aetas: carpe diem, quam minimum credula postero.

Don't ask (it's forbidden to know) what final fate the gods have
given to me and you, Leuconoe, and don't consult Babylonian
horoscopes. How much better it is to accept whatever shall be,
whether Jupiter has given many more winters or whether this is the
last one, which now breaks the force of the Tuscan sea against the
facing cliffs. Be wise, strain the wine, and trim distant hope within
short limits. While we're talking, grudging time will already
have fled: seize the day, trusting as little as possible in tomorrow.


Before I update you on Thurstons progress I wanted to tell you about a beautiful woman I met a few days ago. Her sweet daughter entered the world a mere week ago, born a preemie at 33 weeks, but also born with a chromosomal condition, a condition that most born with die from, sometimes immediate, some in a few months and even fewer will live past a year. My heart bled for this woman. The strength she must have, to know that her daughter will only be here for a very short time, how much no one knows, and to have to at the same time ride the uncertainties of the nicu roller coaster, the tediousness of it all, my heart just gave out.
This family truly understands that every single day counts, that every day they have with their daughter is precious and not one to sit and complain about, that her time is so limited that every single ounce of every second cannot be wasted. They are truly my heroes.

I was able to talk quite a bit with her and her family and wax philosophy with them about the brevity of life, how our situations have changed us and I told them that it was quite a while ago that I just stopped thinking the inevitable question that ALL parents of premature babies ask. "when will my baby come home". I remember early on, I thought for sure Thurston was going to be one of those lucky ones that was able to come home around their due dates, give or take a few weeks. He seemed to have been beyond the horrible ups and downs those first couple of months of the nicu life bring and so I set up his nursery in anticipation of his homecoming. I organized all of his little newborn clothes, I hung vintage plaques of Bambi and Thumber and Flower above his changing table for him to gaze at while I was changing him, I put the glider in a little nook, dreaming about holding him late at night while Viola and daddy slept in the next room. I remember feeling so relieved that he was past all of the hard stuff and could now just move on to cpap, to nasal cannula, then ultimately to room air, just like most of those other little babes did in our NICU. Closing in on his due date, I started to realize that he would be there a little longer, especially as babies that were born 1 and 2 months after him were already at room air and he was stuck on the cpap. I began to get frustrated at the prospect of a couple more months and that is when my mom came back in July to help us out as we just didn't realize he was going to be still in the nicu so much past his due date. Then as he started to show signs of coming home, drinking his bottles of milk, breastfeeding, I was thrilled and so excited that soon, maybe my boy would be able to be home by the time he was 2 months old adjusted....then August hit us, Cold and swift, and I remember thinking to myself that week, please please if he makes it out of this, if he lives through this, I will never ever ever complain again about life in the nicu, I will just be so happy to have my son be alive and well. Well he made it out and I have not even once thought about it ever since. I truly have been changed. I don't even for a second think about when he might come home. I don't even care really. I know we will still be here for halloween and if Thanksgivng and Christmas roll by then so be it. At least now Viola can visit him so we will be able to spend those holidays together as a family, that is what is most important to me.

Anyway, I was telling this brave family that I have learned what Horace meant when long ago he inadvertently coined the phrase "Carpe Diem". Truly truly I enjoy every second of every day with my son. I don't care if he is in the nicu, I just care that I have the ability to go and be with him, to hug and cuddle him, to sing and talk to him, to kiss his sweet face all over. We are truly blessed that he is here with us. I cant truly remember the last time I actually thought that question,"when will he come home?" The only important thing is that he is still here and every single second I get to spend with him, wether it is in a nicu, at home, at the north pole, I really don't give a flying monkeys uncle where, as long as I get to spend it with him.

So Monday night we checked into the Ronald Mcdonald house. It is a few minutes walk from Dell so we felt it would be good to stay there for a few days so we could be close to Thurston. This place just makes it so easy for families in their time of need. I was very nervous so Chad and I decided that I would be with him the night before and Chad would get up early to be with him while he was being wheeled down for surgery. I probably would not have handled that part very well. It worked out great. The scariest part of the surgery for me anyway, was the anesthesia, and going back on the vent. I was nervous with Thurstons chronic lung disease that it would be difficult to get him off of the vent. Well, right after the surgery, we waited in a little room and the surgeon came in and told us it was successful and he did very well. He answered all of our questions and so we went up to Thurstons room where he was waiting for us. He actually was already awake and struggling with the vent and kept fighting it. He had a very scared and pissed off look in his eye, like"what the hell mom, why am I on this again!!!". So the neonatologist came in and I asked if there was anything we could do for him, he was just so uncomfortable, and with his wonderful british accent he said,"well lets just try extubating him and see how he does". WHAT....I was both excited and nervous. They were fully expecting Thurston to be on the vent for at least a few days, but this doctor is crazier than Doctor Maverick back at North Austin. It was only a few hours after his surgery so I really thought this guy was nuts!!!! He said, "well we wont know unless we try and he is not tolerating being on the vent so lets just see how it goes, if we have to reintubate him then we will but we wont know until we try"...Uh ok Ill be going downstairs for a cup of coffee, I just cant stay to watch.......So I go eat and come back and kiddo is back on nasal cannula at the same settings he was on before at 6 liters at around 80 percent oxygen. WOW.........

Anyway, he was ok that first day but during the night he was in a lot of pain and I kept trying to tell the nurse to do something but she kept dragging her feet. She was a very nice nurse but I just couldnt get Thurston to calm down, he wasnt getting any rest and he was practically crying and moaning the whole night. Finally at around 6 in the morning she called the doctor on call and they gave him a phyntinal drip and low and behold, THurston was soooooooooo much more relaxed and comfortable. I just hate pulling teeth with nurses, I mean I so respect them and they do such a great job, but occasionally they just dont listen to parents. I KNOW MY KID HE WAS IN PAIN!!!!!!! The doctor in the morning apologized and said that she should have given him the drip much sooner and that always makes a parent feel a little better that we are NOT THAT ÇRAZY. We truly just want what is best for our kid and truly, we know our kids well. Anyway, they started his feeds back up, THROUGH his g-tube and he will probably be back on full feeds tomorrow. We are very excited for him as he now has a fundoplication that will protect his lungs from reflux and microaspiration(and hopefully help protect him from an incident like the one in August) and he now no longer has to have that tube shoved down his nose poor little guy, that was irritating his throat and making him very uncomfortable. Only time will tell to see if this helps to reduce his oxygen needs at least to a point that he can be on a lower flow, and ultimately, so that we can avoid giving him a tracheostomy. We just have to be patient for our little patient.

So for now, we just have no idea about Thurston's future. All we know is that he is here with us now, he is as cute as a bug in rug, and that we are very lucky that everything so far has been working out at his new NICU and that he is on the path of healing, protecting, and getting the help he needs. Truly this whole experience has taught me that none of us know what our future holds, none of us knows how long we will be here. So when your kids wake you up at 3 in the morning, just know no matter how tired you are, rather than looking at it as an inconvenience just think about it as an extra hour or so that you GET to spend with your child, what a privilege it is to have that little being in your life. I know, especially being separated this long from my sweet beautiful son, that life truly is all about carpe diem!