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 myself....live 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
Thursday, October 21, 2010
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.....
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.
Horace
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 VOILA...my 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!
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.
Horace
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 VOILA...my 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!
Thursday, September 30, 2010
Tuesday Afternoon.....
Tuesday, afternoon,
I'm just beginning to see, now I'm on my way.
It doesn't matter to me, chasing the clouds away.
Something, calls to me,
The trees are drawing me near, I've got to find out why?
Those gentle voices I hear, explain it all with a sigh.
So we have gotten a lot done in these past 2 weeks at Dell. Thurston has had a ton of specialists look at him and has had a real swallow study done and an ENT look down his throat as well. The good news is that his vocal chords are normal and not damaged(we were a little concerned as Thurston does not have a strong cry and it is rather raspy at times). Everything looks normal but he does have some irritation where the NJ tube goes down his throat. The bad news is it really seems as if Thurston has some very severe reflux. He is often very uncomfortable and coughs a lot as well as gags and chokes. I had noticed this in early August as well as some projectile vomiting right before Thurston took a turn for the worse. The doctors have tried every medication, a 24 hour feeding schedule, and an NJ tube that bypasses his stomach to his intestines to no avail, he is still coughing and gagging a lot and it is still making him sooooooo uncomfortable and so now the doctors think that having a gtube/nissen fundoplication( a feeding tube that goes directly in his tummy, and a fundo is placed around his esophagus to prevent contents of his stomach coming back up which will prevent aspiration) will help him immensely with reflux and with oral aversions caused by reflux as well as making him oodles more comfortable as we can say goodbye to the NJ tube down his throat. I cannot even imagine having something stuck down my throat 24 hours a day and it does not seem there is an end in sight due to his high oxygen needs,(Thurston most likely will be on oxygen for a while even at home probably for the next year of his life, his chronic lung disease is very severe).
The other hope with the gtube/fundoplication is that it will help reduce Thurston's oxygen needs. The thought is that because of his severe reflux, Thurston is probably micro-aspirating into his lungs. This micro-aspiration for more healthy babies(Viola being one of them as she also had severe reflux when she was a baby) usually does not effect their lungs. But with Thurston, his lungs are just so fragile and delicate, that even the slightest amount can not only cause higher oxygen needs, but like in August, cause a major life threatening event(pneumonia). So the doctors are hoping that within a month or two after this surgery, Thurston's oxygen needs should go down enough and hopefully to a lower flow(2 or 1) and maybe even low enough that he can finally finally come home(1 liter or less). Its just a wait and see but I truly do feel Thurston will at the very least be a lot more comfortable and his coughing episodes will be eradicated and he can just be a happier more well adjusted baby.
So for now the idea of a trach is put on hold, and we will just hope that this will help him avoid that. His surgery is scheduled for Tuesday afternoon and we will most likely be staying at the ronald mcdonald house for a couple of days so we can be close to him while he is recovering. The most nerve wracking part of the surgery is that he will have to go back on the vent and it might take him up to a week to get off of the vent as he will be sedated for a while to alleviate the pain from the surgery. So we have to expect his oxygen needs to go up and that will be hard for me to take after he has been doing pretty well so far hanging out on 6 liters at around 60 percent oxygen(this hospitals nasal cannula goes up to 8 liters which is awesome as he does not need to go back on cpap at all, another reason to love Dell!!!!)I just hope that his recovery will not entail complications and we can move forward with his recovery.
Thurston also got his RSV shot the synagis(a very expensive shot (1000 dollars a pop) to protect him during rsv season. He will get 1 shot a month through April. Wow talk about an expensive kid.
My mommy is leaving on Saturday, unfortunately, as it would have been great for her to be here for his surgery, but we have had so much fun with her here and it has been incredible to get so much help for so long, we are now officially spoiled rotten. Life at Dell is good though and our stress levels have been significantly reduced since moving Thurston here and just to be able to bring Viola with me anytime I want and/or need to has made our lives much much much more simple and much much more beautiful to just be a family. I love how Thurston and her interact with one another, its just plain cute!!!!!
So next week will probably be a little tough, but we will get through it like we always have, one step at a time, one evening at a time, one morning at a time, and one Tuesday afternoon at a time.......
I'm just beginning to see, now I'm on my way.
It doesn't matter to me, chasing the clouds away.
Something, calls to me,
The trees are drawing me near, I've got to find out why?
Those gentle voices I hear, explain it all with a sigh.
So we have gotten a lot done in these past 2 weeks at Dell. Thurston has had a ton of specialists look at him and has had a real swallow study done and an ENT look down his throat as well. The good news is that his vocal chords are normal and not damaged(we were a little concerned as Thurston does not have a strong cry and it is rather raspy at times). Everything looks normal but he does have some irritation where the NJ tube goes down his throat. The bad news is it really seems as if Thurston has some very severe reflux. He is often very uncomfortable and coughs a lot as well as gags and chokes. I had noticed this in early August as well as some projectile vomiting right before Thurston took a turn for the worse. The doctors have tried every medication, a 24 hour feeding schedule, and an NJ tube that bypasses his stomach to his intestines to no avail, he is still coughing and gagging a lot and it is still making him sooooooo uncomfortable and so now the doctors think that having a gtube/nissen fundoplication( a feeding tube that goes directly in his tummy, and a fundo is placed around his esophagus to prevent contents of his stomach coming back up which will prevent aspiration) will help him immensely with reflux and with oral aversions caused by reflux as well as making him oodles more comfortable as we can say goodbye to the NJ tube down his throat. I cannot even imagine having something stuck down my throat 24 hours a day and it does not seem there is an end in sight due to his high oxygen needs,(Thurston most likely will be on oxygen for a while even at home probably for the next year of his life, his chronic lung disease is very severe).
The other hope with the gtube/fundoplication is that it will help reduce Thurston's oxygen needs. The thought is that because of his severe reflux, Thurston is probably micro-aspirating into his lungs. This micro-aspiration for more healthy babies(Viola being one of them as she also had severe reflux when she was a baby) usually does not effect their lungs. But with Thurston, his lungs are just so fragile and delicate, that even the slightest amount can not only cause higher oxygen needs, but like in August, cause a major life threatening event(pneumonia). So the doctors are hoping that within a month or two after this surgery, Thurston's oxygen needs should go down enough and hopefully to a lower flow(2 or 1) and maybe even low enough that he can finally finally come home(1 liter or less). Its just a wait and see but I truly do feel Thurston will at the very least be a lot more comfortable and his coughing episodes will be eradicated and he can just be a happier more well adjusted baby.
So for now the idea of a trach is put on hold, and we will just hope that this will help him avoid that. His surgery is scheduled for Tuesday afternoon and we will most likely be staying at the ronald mcdonald house for a couple of days so we can be close to him while he is recovering. The most nerve wracking part of the surgery is that he will have to go back on the vent and it might take him up to a week to get off of the vent as he will be sedated for a while to alleviate the pain from the surgery. So we have to expect his oxygen needs to go up and that will be hard for me to take after he has been doing pretty well so far hanging out on 6 liters at around 60 percent oxygen(this hospitals nasal cannula goes up to 8 liters which is awesome as he does not need to go back on cpap at all, another reason to love Dell!!!!)I just hope that his recovery will not entail complications and we can move forward with his recovery.
Thurston also got his RSV shot the synagis(a very expensive shot (1000 dollars a pop) to protect him during rsv season. He will get 1 shot a month through April. Wow talk about an expensive kid.
My mommy is leaving on Saturday, unfortunately, as it would have been great for her to be here for his surgery, but we have had so much fun with her here and it has been incredible to get so much help for so long, we are now officially spoiled rotten. Life at Dell is good though and our stress levels have been significantly reduced since moving Thurston here and just to be able to bring Viola with me anytime I want and/or need to has made our lives much much much more simple and much much more beautiful to just be a family. I love how Thurston and her interact with one another, its just plain cute!!!!!
So next week will probably be a little tough, but we will get through it like we always have, one step at a time, one evening at a time, one morning at a time, and one Tuesday afternoon at a time.......
Friday, September 24, 2010
"Dell"ightful!!!!!
So its been a few days at Dell Childrens hospital and already, we are thrilled and settling right in at our new NICU residence. The exiting news is that Thurston already, in this very short period of time, has been looked at by almost every specialist that must exist. He has been seen by two pulomonologists, a GI specialist, an ENT specialist, a heart doctor, and of course his Neonatologists as well as ot, pt and a life care specialist. The absolutely wonderful thing is the first day we were there, both the neonatologist and the pulmonologist took one look at Thurston and said....ummmm this kiddo does not look or present like a trach kid, with both of the docs saying, "wow, we were expecting a lot worse". WOW WOW and more WOW. Now by no means did they mean Thurston is not sick but I think both of them thought that we need to investigate Thurstons case a lot further before we even think about giving him a tracheostomy. The neonatologist even said he would rather wait even a couple more months and do some further testing then to trach him just to get him home....music to my ears. All I want is the best for my son whatever that entails and in the end, like I said before if he needs a trach than thats what we will do but so far, no one is in a hurry to perform any operation, and everyone seems to think we have some time to do some investigation before that might even be a possiblity. They both also said that they have never really seen a kid on the nasal cannula that needed a trach and the kids that were candidates for trachs are usually vent dependent, not breathing on their own etc. So that was very reassuring. The pulmonologist said that his excessive oxygen needs might also stem from some mild pulmonary hypertension and they are also investigating reflux as a possible culprit as well. So they are switching around some medications, giving him some lasix, doing some more echos on his heart, putting him on nitric(which treats pulmonary hypertension)and they are nj tube feeding him where the tube bypasses his stomach and goes directly into his intestines, with the intention of trying to reduce his reflux, gagging, and incessant coughing episodes. All of this is hopefully going to help reduce his oxygen needs and at the very least, make my kiddo a little more comfortable. Wow, they are really switching things up quite a bit and doing a lot in such a short amount of time.
The next most beautiful thing to happen is my sweet daughter and sweet son finally got to meet face to face for the first time. It was so sweet. The child life specialist gave Viola a doll first that had all of the tubings and wires that Thurston has to prepare her, allay any fears she might have when she meets him, and see how she would react to all of the medical equipement. I have to say, I almost wish we would have moved to Dell sooner, like a few months ago. They really specialize in so muh more than just medicine and we feel like we are such a huge part of Thurstons life now, they really make you feel like a family and that you are just as important as the patient is, now thats what Im talking about.
Viola was so exited. The first thing she did was to put the pacifier in Thurstons mouth. She stroked his head and he just kept staring at her almost as if he recongnized her or something. Then before you knew it, she gave him the biggest most beautiful hug ever. It was such a beautiful day. By the way, I was able to actually leave my mom with Thurston alone when I went to pick up Viola from school. Wow this place is so freeing.
So for now, we are still just trying to figure everything out. Nothing has been ruled in or ruled out, but at least we are on the path of discovery. Needless to say, we couldnt be more "Dell"ighted with our new residence and just hope that we can soon move forward and finally get our kiddo home where he belongs.
Here are a few recent pictures:
Thurstons new digggggs!!!
Awwwwww Brother and sister touching each other...look at Thurston trying to copy sissy!!
Are you sure she's my sister mom?
Viola giving her brother his paci, already mommys big helper!!!
Our first real family portrait...boy are we ever happy!!!!!
The next most beautiful thing to happen is my sweet daughter and sweet son finally got to meet face to face for the first time. It was so sweet. The child life specialist gave Viola a doll first that had all of the tubings and wires that Thurston has to prepare her, allay any fears she might have when she meets him, and see how she would react to all of the medical equipement. I have to say, I almost wish we would have moved to Dell sooner, like a few months ago. They really specialize in so muh more than just medicine and we feel like we are such a huge part of Thurstons life now, they really make you feel like a family and that you are just as important as the patient is, now thats what Im talking about.
Viola was so exited. The first thing she did was to put the pacifier in Thurstons mouth. She stroked his head and he just kept staring at her almost as if he recongnized her or something. Then before you knew it, she gave him the biggest most beautiful hug ever. It was such a beautiful day. By the way, I was able to actually leave my mom with Thurston alone when I went to pick up Viola from school. Wow this place is so freeing.
So for now, we are still just trying to figure everything out. Nothing has been ruled in or ruled out, but at least we are on the path of discovery. Needless to say, we couldnt be more "Dell"ighted with our new residence and just hope that we can soon move forward and finally get our kiddo home where he belongs.
Here are a few recent pictures:
Thurstons new digggggs!!!
Awwwwww Brother and sister touching each other...look at Thurston trying to copy sissy!!
Are you sure she's my sister mom?
Viola giving her brother his paci, already mommys big helper!!!
Our first real family portrait...boy are we ever happy!!!!!
Thursday, September 23, 2010
Bicenntenial days...200 days and counting...
I had previously wrote a very nervous and scared post. As I had stated we needed to make some decisions that involved both transferring him to a different hospital and also considering some surgeries. These are both very scary decisions to make and not easy. I am not a willy nilly person. When our dishwasher broke, it took me almost a month to research, and investigate the kind of dishwasher i wanted, the sales going on, I went into stores to try them out, I just really wanted to get the best value for my money, and be happy with my decision with no regrets. Well obviously when it comes to your child, I don't think any parent is going to enter into decisions, especially ones that could involve the life of your child, very lightly. I mean when you go buy a car you always take a test drive right? I know for some it may have seemed like I was dragging my feet, and maybe for a few, not making the best choice for my child, but I felt I had to investigate thoroughly every option for Thurston, so that I could make give him the best informed decision. My child is not a dishwasher or a car, he is a human being and I just needed to make sure that this was the right move for him. If the doctors had told me it was life or death or told me that it was urgent, obviously I would not have hesitated at all, but I had time to do some research and I am so glad I did.
Last Friday I made an appointment to go to Dell Children's hospital to see what it was like. I felt that that would help alot in allaying any fears I had especially as i had heard that the rooms were private. Now for you and I, if we were in the hospital, a private room is pure heaven, but for my sweet baby, who is so used to an open space or a bay as they call it, where EVERYONE and their mother(literally) walks by and says hi to him, talks to him, where he can hear a million conversations, it was very comforting to me to know that he was never ever alone and that he would get all the attention in the world. He is a social butterfly and LOVES to be around people, so that was very hard for me to swallow.
Secondly, I was not sold on the idea of my son getting a tracheostomy. Not that I wouldn't do it in a heartbeat if I felt that is truly what he needed, but I just had this little tick tock inside of me that was telling me not to rush into it, something just didn't seem right about it. Mostly because my son has never had really any testing or specialists looking at him. He has never even been seen by and Ear Nose and Throat doctor, his airways have never been evaluated, he has never been seen by a GI specialist, or a heart specialist for that matter. He has only been seen I think a couple of times by a pulmonologist but to me I just felt, not all of our options have been investigated, he deserves to have every possible scenario exhausted before he just simply "gets a trach" Now if for some reason all of these things are looked at and the ultimate conclusion is to give him one then so be it. But I don't think anyone would even consider an invasive surgery for even themselves let alone their children, especially one so life altering as a tracheostomy, without first exhausting other possible causes of their condition, and perhaps other treatments available.
So before visiting Dell, I was terrified. Besides the whole private room thing, we would have to adjust to all new nurses and nursing styles, new rules and regulations, new procedures, new policies, I just felt almost as if we were back to square one in a lot of ways. Also the drive is a bit further, and most importantly, I was petrified that all of the doctors automatically assumed my son would need a trach, that they would have a preconceived notion about my son and it would already be in their heads and that they wouldn't actually investigate any further what else could really be going on with my son.
OH BOY WAS I EVER PROVEN WRONG.......
First and foremost the NICU rules and regulations are OUTSTANDING and so much less restrictive than NA. Now I am in no way denigrating any regulations at Thurston's old NICU. Those rules and regulations have to be in place as Premature babies are so extremely fragile, its an extremely sensitive time for the families as there are soooooo many ups and downs and uncertainties etc. And most importantly, they expect most preemies to go home by their due dates, so it is unusual for most families to be there as long as Thurston, as any baby needing more support surgeries etc. will usually transfer out of there. So I fully support and am so grateful for those rules that were in place that protected my son in the time that he was there. Because Dell is a children's hospital, they take into consideration the fact that most of the children there have long term chronic illnesses and there is no way to predict how long the families will have to be there, so their rules and much more relaxed and geared toward making the families lives much easier. Here are just a few things that Chad and I were thrilled about:
First and foremost, FINALLY Viola and Thurston can meet face to face and spend some real quality time together. Because viola is on a delayed vaccine schedule, she was not allowed into our NICU(again I totally understood this and supported that) but now I can bring her in every day so they can finally get to know each other. Plus, if I want to go see Thurston I don't have to have a babysitter....I can just bring Viola with me, wow that takes a ton of stress off of us right there. After hearing this, I was sold!!!! That was almost reason enough to move Thurston.
Second...They do not ever close. Chad used to have to wait until 8 o'clock to go into the NICU to see Thurston which meant he had to stay at work an extra hour which meant that he came home later. Also, there were times that I was only able to go later in the day and would have to leave by 630 cutting short my time to be with him. Now we can go in any time we want, whenever we want, and stay as long as we want, which is very nice indeed.
Third...I can bring in any visitors I want any time. We were limited to only 4 visitors the entire 7 months we were in the NICU. That was hard on us as our family lives far away so when we signed up Chads mom and dad, that took up 2 of the spots and they only went in 2 whole times when he was first born. We signed up my friend Karen who also came to help us for 2 weeks and she only saw him about 2 times and then she went home. Then one spot was left when my mom came to visit and then she went home after 9 days. The director was nice enough and understanding of our situation and allowed for us to sign up Chads brother Brad who was only in town for 5 days. So Thurston literally only had probably 10 total visits from other people beside Chad and I in the almost 7 months that he was in the NICU, while other families who had family in town were able to bring them in daily. So we are excited that Thurston will now be able to meet more of our family and friends. More YEA!!!
Fourth...We get to sign up 4 very special people, who will be able to come see Thurston on their own, without Chad or I having to be there. This also will be incredible as we will have more people to give him lots of love and holding when Chad and I cant be there.
Fifth......They have volunteers who come in and spend time with the kiddos. They also have a child life program that includes development, OT, pt, speech therapies, and incorporates Viola in the mix to help her adjust to her brother and his hospitalization. FANTASTIC!!!!!
Sixth...Just a silly thing really but as a nursing mother, they feed me!!!! Yup I get to order from the cafeteria and they feed me for free...Hey Ill take it!!!!
Seventh.....Ok remember my post about HATING those damn sticky labels and the amount of time it takes to clean the bottles for my milk...WELL they provide all the bottles and do not reuse them so I never have to wash another bottle, or try cleaning the stickies off of them ever again. AND I get my kitchen counter back...It does make me cringe a little about the waste of plastic, as an avid recycler, however they said that breast milk is a bodily fluid so for germ purposes they cannot reuse the containers....Hey Ill take it, It would be nice for the break and free up some extra time for me to do other things yea!!!!
Eight...within the private rooms they actually provide my very own breast pump. I don't have to go scrounging for one ever again and the nurse don't have to either YIPEEEEEEEEE plus it is very sanitary to do it that way, so you don't have to worry about other peoples germs...
Ninth....They want me to use my fresh breast milk, and not my frozen if they can help it, and they are now giving Thurston 100 percent breast milk fortified with neosure so that is fantastic
AND drum roll please...the tenth and obviously most important reason is that Thurston will be evaluated by every specialist known to the pediatric world. They are all there, just popping their heads into the room, and it is great to get a ton of new ideas as to how to fix my poor little sweet boy. All of the doctors at NA told me that Dell was the best place for him for this reason alone, and were huge proponents of him moving there, I was just so nervous. We have built a family at his NICU, I love all of his beautiful nurses, RTs, Pharms, Doctors, Receptionists, custodians etc. and they love my son with all of their hearts and souls and I am indebted to them for life. But after leaving on Friday, it just was a no brainer for me, my fear flew out the window and I knew that this was the place for him. It was very emotional to leave however, and I cried the whole time. It was just to painful to say goodbye to everyone. I will have to pop in later, when things are settled to thank them properly for everything they have done for us.
So on Tuesday of this week, just one day shy of his 200th day of life, his bicentennial day if you will and just a just a few short days after my visit to Dell, we traveled to my sons new residence. It was his first trip ever outside and of course, he slept through the whole trip, how funny. A new post of how his first couple of days went will follow this one but just wanted to update everyone on the move.
Last Friday I made an appointment to go to Dell Children's hospital to see what it was like. I felt that that would help alot in allaying any fears I had especially as i had heard that the rooms were private. Now for you and I, if we were in the hospital, a private room is pure heaven, but for my sweet baby, who is so used to an open space or a bay as they call it, where EVERYONE and their mother(literally) walks by and says hi to him, talks to him, where he can hear a million conversations, it was very comforting to me to know that he was never ever alone and that he would get all the attention in the world. He is a social butterfly and LOVES to be around people, so that was very hard for me to swallow.
Secondly, I was not sold on the idea of my son getting a tracheostomy. Not that I wouldn't do it in a heartbeat if I felt that is truly what he needed, but I just had this little tick tock inside of me that was telling me not to rush into it, something just didn't seem right about it. Mostly because my son has never had really any testing or specialists looking at him. He has never even been seen by and Ear Nose and Throat doctor, his airways have never been evaluated, he has never been seen by a GI specialist, or a heart specialist for that matter. He has only been seen I think a couple of times by a pulmonologist but to me I just felt, not all of our options have been investigated, he deserves to have every possible scenario exhausted before he just simply "gets a trach" Now if for some reason all of these things are looked at and the ultimate conclusion is to give him one then so be it. But I don't think anyone would even consider an invasive surgery for even themselves let alone their children, especially one so life altering as a tracheostomy, without first exhausting other possible causes of their condition, and perhaps other treatments available.
So before visiting Dell, I was terrified. Besides the whole private room thing, we would have to adjust to all new nurses and nursing styles, new rules and regulations, new procedures, new policies, I just felt almost as if we were back to square one in a lot of ways. Also the drive is a bit further, and most importantly, I was petrified that all of the doctors automatically assumed my son would need a trach, that they would have a preconceived notion about my son and it would already be in their heads and that they wouldn't actually investigate any further what else could really be going on with my son.
OH BOY WAS I EVER PROVEN WRONG.......
First and foremost the NICU rules and regulations are OUTSTANDING and so much less restrictive than NA. Now I am in no way denigrating any regulations at Thurston's old NICU. Those rules and regulations have to be in place as Premature babies are so extremely fragile, its an extremely sensitive time for the families as there are soooooo many ups and downs and uncertainties etc. And most importantly, they expect most preemies to go home by their due dates, so it is unusual for most families to be there as long as Thurston, as any baby needing more support surgeries etc. will usually transfer out of there. So I fully support and am so grateful for those rules that were in place that protected my son in the time that he was there. Because Dell is a children's hospital, they take into consideration the fact that most of the children there have long term chronic illnesses and there is no way to predict how long the families will have to be there, so their rules and much more relaxed and geared toward making the families lives much easier. Here are just a few things that Chad and I were thrilled about:
First and foremost, FINALLY Viola and Thurston can meet face to face and spend some real quality time together. Because viola is on a delayed vaccine schedule, she was not allowed into our NICU(again I totally understood this and supported that) but now I can bring her in every day so they can finally get to know each other. Plus, if I want to go see Thurston I don't have to have a babysitter....I can just bring Viola with me, wow that takes a ton of stress off of us right there. After hearing this, I was sold!!!! That was almost reason enough to move Thurston.
Second...They do not ever close. Chad used to have to wait until 8 o'clock to go into the NICU to see Thurston which meant he had to stay at work an extra hour which meant that he came home later. Also, there were times that I was only able to go later in the day and would have to leave by 630 cutting short my time to be with him. Now we can go in any time we want, whenever we want, and stay as long as we want, which is very nice indeed.
Third...I can bring in any visitors I want any time. We were limited to only 4 visitors the entire 7 months we were in the NICU. That was hard on us as our family lives far away so when we signed up Chads mom and dad, that took up 2 of the spots and they only went in 2 whole times when he was first born. We signed up my friend Karen who also came to help us for 2 weeks and she only saw him about 2 times and then she went home. Then one spot was left when my mom came to visit and then she went home after 9 days. The director was nice enough and understanding of our situation and allowed for us to sign up Chads brother Brad who was only in town for 5 days. So Thurston literally only had probably 10 total visits from other people beside Chad and I in the almost 7 months that he was in the NICU, while other families who had family in town were able to bring them in daily. So we are excited that Thurston will now be able to meet more of our family and friends. More YEA!!!
Fourth...We get to sign up 4 very special people, who will be able to come see Thurston on their own, without Chad or I having to be there. This also will be incredible as we will have more people to give him lots of love and holding when Chad and I cant be there.
Fifth......They have volunteers who come in and spend time with the kiddos. They also have a child life program that includes development, OT, pt, speech therapies, and incorporates Viola in the mix to help her adjust to her brother and his hospitalization. FANTASTIC!!!!!
Sixth...Just a silly thing really but as a nursing mother, they feed me!!!! Yup I get to order from the cafeteria and they feed me for free...Hey Ill take it!!!!
Seventh.....Ok remember my post about HATING those damn sticky labels and the amount of time it takes to clean the bottles for my milk...WELL they provide all the bottles and do not reuse them so I never have to wash another bottle, or try cleaning the stickies off of them ever again. AND I get my kitchen counter back...It does make me cringe a little about the waste of plastic, as an avid recycler, however they said that breast milk is a bodily fluid so for germ purposes they cannot reuse the containers....Hey Ill take it, It would be nice for the break and free up some extra time for me to do other things yea!!!!
Eight...within the private rooms they actually provide my very own breast pump. I don't have to go scrounging for one ever again and the nurse don't have to either YIPEEEEEEEEE plus it is very sanitary to do it that way, so you don't have to worry about other peoples germs...
Ninth....They want me to use my fresh breast milk, and not my frozen if they can help it, and they are now giving Thurston 100 percent breast milk fortified with neosure so that is fantastic
AND drum roll please...the tenth and obviously most important reason is that Thurston will be evaluated by every specialist known to the pediatric world. They are all there, just popping their heads into the room, and it is great to get a ton of new ideas as to how to fix my poor little sweet boy. All of the doctors at NA told me that Dell was the best place for him for this reason alone, and were huge proponents of him moving there, I was just so nervous. We have built a family at his NICU, I love all of his beautiful nurses, RTs, Pharms, Doctors, Receptionists, custodians etc. and they love my son with all of their hearts and souls and I am indebted to them for life. But after leaving on Friday, it just was a no brainer for me, my fear flew out the window and I knew that this was the place for him. It was very emotional to leave however, and I cried the whole time. It was just to painful to say goodbye to everyone. I will have to pop in later, when things are settled to thank them properly for everything they have done for us.
So on Tuesday of this week, just one day shy of his 200th day of life, his bicentennial day if you will and just a just a few short days after my visit to Dell, we traveled to my sons new residence. It was his first trip ever outside and of course, he slept through the whole trip, how funny. A new post of how his first couple of days went will follow this one but just wanted to update everyone on the move.
Monday, September 20, 2010
Fundraiser for thurston
My dear sweet mamas group is holding a fundraiser for thurston...I like to call it a thurst-a-thon. Anyway here is the site. Wer so grateful and a big thanx to Melanie for putting this together
thurst-a-thon
Thursday, September 16, 2010
Decisions, decisions....
Today was a very stressful day. We have to make some very very tough decisions about our son. I am pretty broken up. I hope no one ever has to make these kinds of decisions for their children. It's just very stressful and painful.
Tuesday, September 14, 2010
Candide, The garden of forking paths and The persistence of memory.......27 weeks and counting....
First not too much to report on Thurston. He is still on nasal cannula and they decided to lower his liters and put him on 100 percent oxygen, much like they were doing in August right before he took a turn for the worse. He had a swallow study done where they found he was NOT refluxing so we need to do some further testing to make any more forward moves. They have talked about trachs and gtubes but we are looking into getting some more testing done before we make any decisions. We still have no idea when he will come home and how. We are kind of in a holding pattern. But for now, he seems to be doing ok and is still the king of the NICU, adored by everyone who meets him.
Its hard to believe, but as of yesterday, Thurston has been in the NICU as long as I was pregnant with him, 27 weeks. WOW. Coincidentally it was this week last year that I became pregnant. I often think about all of those early happy memories, the dreams that I had of my pregnancy, how happy I was when I found out a few weeks later, the thought of my two kids taking baths together, what Violas reaction would have been, the playdates we would have went to etc. Those futuristic dreams are now distant memories. I often think of what our lives would have been like had everything been normal, like I am forever trapped in a Luis Borges novella. Every day is a struggle to remain positive and hopeful but I actually find that recently, I have been moving forward with my life, with our lives. There is something about this entire experience that paralyzes you, you feel as if you cannot move. At first its because literally you are like a deer in headlights, you cant believe any of it is happening, you feel like you are walking around in a Salvador Dali painting full of ants, melting clocks, and vast landscapes that seem to go on forever and nowhere at the same time. Then as you settle into your new world, and routine, you don't really plan because you think, well, he will be home soon, its just a matter of time and then after he comes home, you will settle into a routine and then move forward into the future, into your new life. Then suddenly, you realize, there is no end to this, it could be another 4 to 6 months maybe even longer.
But this last experience with Thurston in August when he had a 50/50 chance of living, I realized that I cannot just sit and wait, I must move forward, I have another child at home, I have a husband, and I have myself to think about as well as my son.
Right before all this happened I decided to open up a vintage shop on etsy, called Dust Bowl Vintage. I have such a passion for the early 20th century, mainly, the Edwardian, Flapper and Depression eras. I also love to sew and wear fashions from those eras so I thought, even with a newborn, I would find some time here and there to dedicate to those endeavors, those passions that I have had nearly my entire life.
I was also in the midst of planning things for my little girl who is growing up so fast. Swimming lessons, dance and/or gymnastics, playdates, preschool were all on the horizon when in February we found out my pregnancy was in jeopardy. My husband was supposed to finish his Masters Thesis as well this past semester in college as well as work on finessing his musical prowess by taking private lessons. All of us had so many goals that stopped completely in their tracks. Life completely halted.
So for about 7 months now everything has been put on a back burner. Our lives became just about survival and hard choices. Everyday our choices revolve around the NICU life, and now instead of "should I sew", "should I work on my thesis", "should Viola take a gymnastics class or a dance class", the choices are now; "do I spend more time with Viola today, or should I go see Thurston"; "do I pump before I go to the NICU or wait until I get there", "should we consider getting him a trach and gtube, or should we wait and just let his lungs heal" etc. Chad has always had to work fairly late, but tried to get home to at least be able to see Viola and read to her before bed. Now he has to make a choice; "Should I see my son after work, or do I go home to see my daughter", not a choice I ever thought myself or my husband would have to make, especially for this long. It is hard, I will not lie. Sometimes I feel like people who are undergoing something like this somehow are held to higher standards, like we have to be more stoic, less whiney, or something, that we are not allowed to ever ever complain or occasionally look at the glass as half empty instead of half full. But every day I see people bitching and complaining about their normal lives and their woes......I think we are entitled to the same privileges.
One of the preemie moms on my preemie message board the other day asked how I remained positive after reading my post "a grain of salt and a pound of hope". I told her that it is BECAUSE I allow myself to feel depressed, scared, sad, whiney,and freak out, etc. How can anyone go through something this life altering and not have a bad day....normal people with normal lives have them all the time, why cant I. The other day, I stopped in a parking lot and just balled my head off for about 15 minutes, completely freaked out and then I felt a ton better. I told her the key that I have found to keeping positive IS by allowing yourself to feel all of the other stuff but just not allowing it to take over. There is a very poignant scene from the tv show "Lost" where Jack tells Kate how he conquers fear:
Lost Scene
This is how I now deal with our situation, I allow myself to feel all of the anguish, depression, and sadness, I allow myself to feel sorry for our situation, and to freak out, but only for a very short time, I don't let it consume me anymore, but I also don't pretend that I am made of steel either. This has allowed me to move forward and to ask for help, and we have received a ton of it lately; just this week I enrolled Viola in both a moms day out AND a dance class. I went thrift shopping for the first time in ages(thanx mommy) and found 10 vintage outfits that look like they walked out of those eras that I adore so much, hell I even fingerwaved my hair today, something I have not done since January. Chad has been working on some side projects for people as well. My moms group is organizing a fundraiser to help us out with the unforeseen costs of having a child in the hospital this long(love you guys!). It seems our lives are slowly but surely moving forward. Most days I am very happy and very grateful and although I envisioned my garden going down a different path, that I will not have that ultimate nirvana that I dreamt of, I realize that I must live in the here and now...as in the great last line in Voltaire's exquisite satire, "Candide", "we must cultivate OUR garden", the only one that truly exists.
Its hard to believe, but as of yesterday, Thurston has been in the NICU as long as I was pregnant with him, 27 weeks. WOW. Coincidentally it was this week last year that I became pregnant. I often think about all of those early happy memories, the dreams that I had of my pregnancy, how happy I was when I found out a few weeks later, the thought of my two kids taking baths together, what Violas reaction would have been, the playdates we would have went to etc. Those futuristic dreams are now distant memories. I often think of what our lives would have been like had everything been normal, like I am forever trapped in a Luis Borges novella. Every day is a struggle to remain positive and hopeful but I actually find that recently, I have been moving forward with my life, with our lives. There is something about this entire experience that paralyzes you, you feel as if you cannot move. At first its because literally you are like a deer in headlights, you cant believe any of it is happening, you feel like you are walking around in a Salvador Dali painting full of ants, melting clocks, and vast landscapes that seem to go on forever and nowhere at the same time. Then as you settle into your new world, and routine, you don't really plan because you think, well, he will be home soon, its just a matter of time and then after he comes home, you will settle into a routine and then move forward into the future, into your new life. Then suddenly, you realize, there is no end to this, it could be another 4 to 6 months maybe even longer.
But this last experience with Thurston in August when he had a 50/50 chance of living, I realized that I cannot just sit and wait, I must move forward, I have another child at home, I have a husband, and I have myself to think about as well as my son.
Right before all this happened I decided to open up a vintage shop on etsy, called Dust Bowl Vintage. I have such a passion for the early 20th century, mainly, the Edwardian, Flapper and Depression eras. I also love to sew and wear fashions from those eras so I thought, even with a newborn, I would find some time here and there to dedicate to those endeavors, those passions that I have had nearly my entire life.
I was also in the midst of planning things for my little girl who is growing up so fast. Swimming lessons, dance and/or gymnastics, playdates, preschool were all on the horizon when in February we found out my pregnancy was in jeopardy. My husband was supposed to finish his Masters Thesis as well this past semester in college as well as work on finessing his musical prowess by taking private lessons. All of us had so many goals that stopped completely in their tracks. Life completely halted.
So for about 7 months now everything has been put on a back burner. Our lives became just about survival and hard choices. Everyday our choices revolve around the NICU life, and now instead of "should I sew", "should I work on my thesis", "should Viola take a gymnastics class or a dance class", the choices are now; "do I spend more time with Viola today, or should I go see Thurston"; "do I pump before I go to the NICU or wait until I get there", "should we consider getting him a trach and gtube, or should we wait and just let his lungs heal" etc. Chad has always had to work fairly late, but tried to get home to at least be able to see Viola and read to her before bed. Now he has to make a choice; "Should I see my son after work, or do I go home to see my daughter", not a choice I ever thought myself or my husband would have to make, especially for this long. It is hard, I will not lie. Sometimes I feel like people who are undergoing something like this somehow are held to higher standards, like we have to be more stoic, less whiney, or something, that we are not allowed to ever ever complain or occasionally look at the glass as half empty instead of half full. But every day I see people bitching and complaining about their normal lives and their woes......I think we are entitled to the same privileges.
One of the preemie moms on my preemie message board the other day asked how I remained positive after reading my post "a grain of salt and a pound of hope". I told her that it is BECAUSE I allow myself to feel depressed, scared, sad, whiney,and freak out, etc. How can anyone go through something this life altering and not have a bad day....normal people with normal lives have them all the time, why cant I. The other day, I stopped in a parking lot and just balled my head off for about 15 minutes, completely freaked out and then I felt a ton better. I told her the key that I have found to keeping positive IS by allowing yourself to feel all of the other stuff but just not allowing it to take over. There is a very poignant scene from the tv show "Lost" where Jack tells Kate how he conquers fear:
Lost Scene
This is how I now deal with our situation, I allow myself to feel all of the anguish, depression, and sadness, I allow myself to feel sorry for our situation, and to freak out, but only for a very short time, I don't let it consume me anymore, but I also don't pretend that I am made of steel either. This has allowed me to move forward and to ask for help, and we have received a ton of it lately; just this week I enrolled Viola in both a moms day out AND a dance class. I went thrift shopping for the first time in ages(thanx mommy) and found 10 vintage outfits that look like they walked out of those eras that I adore so much, hell I even fingerwaved my hair today, something I have not done since January. Chad has been working on some side projects for people as well. My moms group is organizing a fundraiser to help us out with the unforeseen costs of having a child in the hospital this long(love you guys!). It seems our lives are slowly but surely moving forward. Most days I am very happy and very grateful and although I envisioned my garden going down a different path, that I will not have that ultimate nirvana that I dreamt of, I realize that I must live in the here and now...as in the great last line in Voltaire's exquisite satire, "Candide", "we must cultivate OUR garden", the only one that truly exists.
Sunday, September 5, 2010
GOING THE EXTRA "S"MILE.............
So its been a while and lots to update. First and foremost, my mommy is back in town....FOR A WHOLE MONTH...wow we really have had a ton of help lately and I just cant believe how lucky we are to have my mom back for so long(thanx Juju and Mimi, Shannon, Lonnie, Patrick, Trish and Winnie for helping with everything else). That's going to help a ton as Thurston is now 3 months old adjusted and needs alot more mommy and daddy time to work on his milestones, or should I say SMILESTONES.......
I know I previously posted he smiled and he did but it wasn't necessarily a social smile, you know the kind where the baby actually KNOWS that he/she is smiling at you, in response to your smile etc. As any preemie parent will tell you, especially in Thurston's case where we were told about all of his high chances of having alot of neurological issues, any and all milestones are huge, bigger than huge, because we are told early on that our children may not achieve them. Well this baby is just yet again, "proving those statistics all wrong". I remember that I told everyone I would shout it, scream it when I saw that first social smile, the one that every parent waits for with bated breath, the one that melts your heart...Here I am SHOUTING FOR JOY WHHHHOOOOOOOOOOOHOOOOOOOOOOOOOO. Well not only did we get one but we were recording it while he did it. How lucky was that. It of course made me tear up, cry even, it was just priceless:
He is also doing everything a normal newborn should so far....he is reaching out and trying to touch things, he looks around at different objects with intense interest, he is starting to coo just a little, he kicks his little legs and arms, just like a normal sweet little newborn should, we are just so relieved and delighted. I think everyone is. He is also 9 big ol' butterball pounds which is still under the 5th percentile, but he is acutally in the 13th percentile for his height(22.6, according to the average percentile charts) which is absolutely unheard of for a micropreemie, growth restricted, IUGR baby. Way to go my little man. I am just so proud of my son.
Another incredible joyous tidbit of info, although I was not really surprised to hear this(no pun intended) is that he passed his newborn hearing test...YEA....that is just one more thing we can check off the worry list. Thurston always showed signs that he could hear so it wasn't something I was ever truly concerned about, but it sure is great to have it verified by the professionals.
On the medical front not a whole lot has changed. He is still on the nasal cannula at 5 liters anywhere from 40-80 percent oxygen. They did finally wean him off of the nitric oxide as they do have plans to do a swallow study and an MRI which they need to transport him for and a nitric tank would be quite cumbersome to do that with. He still cannot eat by mouth as they want to do the swallow study first to make sure that he is not aspirating while he eats so he is still being fed through the ng tube. They also have him on a continuous feed as they think it is helping with his reflux and oxygen needs. He is still on too many medications to list, but hopefully they can begin weaning him off of a few here and there, especially the seizure medication once they rule out any neurological issues(see...hows them positive apples for ya).
When I was checking his chart today to see how much he weighed I had to do a double take at the day he was on in the NICU.....181 days and counting.....GULP...After this long you just kind of stop adding it up but that just kind of threw me for a loop. And the truth of the matter is, Thurston could quite possibly still be in the NICU by his first birthday, and yes that is a very daunting thought, but we continue to be grateful for all of his progress and we feel so lucky that he is such a little fighter. He shows me everyday what true strength is, what an unbelievable and tenacious spirit he has, and honestly when I think of how much this little Buster has been through, there are no amount of miles I have or will travel back and forth to the NICU that compare to how many miles he has traversed to be where he is, how much he has endured to be here and to stay with us......this kid truly has gone and continues to go the extra mile!!!!!!!!!
I know I previously posted he smiled and he did but it wasn't necessarily a social smile, you know the kind where the baby actually KNOWS that he/she is smiling at you, in response to your smile etc. As any preemie parent will tell you, especially in Thurston's case where we were told about all of his high chances of having alot of neurological issues, any and all milestones are huge, bigger than huge, because we are told early on that our children may not achieve them. Well this baby is just yet again, "proving those statistics all wrong". I remember that I told everyone I would shout it, scream it when I saw that first social smile, the one that every parent waits for with bated breath, the one that melts your heart...Here I am SHOUTING FOR JOY WHHHHOOOOOOOOOOOHOOOOOOOOOOOOOO. Well not only did we get one but we were recording it while he did it. How lucky was that. It of course made me tear up, cry even, it was just priceless:
He is also doing everything a normal newborn should so far....he is reaching out and trying to touch things, he looks around at different objects with intense interest, he is starting to coo just a little, he kicks his little legs and arms, just like a normal sweet little newborn should, we are just so relieved and delighted. I think everyone is. He is also 9 big ol' butterball pounds which is still under the 5th percentile, but he is acutally in the 13th percentile for his height(22.6, according to the average percentile charts) which is absolutely unheard of for a micropreemie, growth restricted, IUGR baby. Way to go my little man. I am just so proud of my son.
Another incredible joyous tidbit of info, although I was not really surprised to hear this(no pun intended) is that he passed his newborn hearing test...YEA....that is just one more thing we can check off the worry list. Thurston always showed signs that he could hear so it wasn't something I was ever truly concerned about, but it sure is great to have it verified by the professionals.
On the medical front not a whole lot has changed. He is still on the nasal cannula at 5 liters anywhere from 40-80 percent oxygen. They did finally wean him off of the nitric oxide as they do have plans to do a swallow study and an MRI which they need to transport him for and a nitric tank would be quite cumbersome to do that with. He still cannot eat by mouth as they want to do the swallow study first to make sure that he is not aspirating while he eats so he is still being fed through the ng tube. They also have him on a continuous feed as they think it is helping with his reflux and oxygen needs. He is still on too many medications to list, but hopefully they can begin weaning him off of a few here and there, especially the seizure medication once they rule out any neurological issues(see...hows them positive apples for ya).
When I was checking his chart today to see how much he weighed I had to do a double take at the day he was on in the NICU.....181 days and counting.....GULP...After this long you just kind of stop adding it up but that just kind of threw me for a loop. And the truth of the matter is, Thurston could quite possibly still be in the NICU by his first birthday, and yes that is a very daunting thought, but we continue to be grateful for all of his progress and we feel so lucky that he is such a little fighter. He shows me everyday what true strength is, what an unbelievable and tenacious spirit he has, and honestly when I think of how much this little Buster has been through, there are no amount of miles I have or will travel back and forth to the NICU that compare to how many miles he has traversed to be where he is, how much he has endured to be here and to stay with us......this kid truly has gone and continues to go the extra mile!!!!!!!!!
Friday, August 27, 2010
about the pics
so my nurse Ami is crazy about me and has stored all of these pics of me for my mom and dad.........my mom and dad have more on their web site and in their camera and one day my mom will interate them into the posts as well but for now this was the easiest and quickest way to get a bunch up so enjoy them.
pictures
Who little old me?????
Whatch you talkin bout willis?
Well you dont say hmmmmmmmm....
Whew, this place wears me out!!!
Oh god, not another Glowie picture, sheeesh mom....
Whatch you talkin bout willis?
Well you dont say hmmmmmmmm....
Whew, this place wears me out!!!
Oh god, not another Glowie picture, sheeesh mom....
pictures
Ok let me see how many days Ive been in the NICU..one..two..three......
Ok Ok so Ive gained a little weight, so sue me!
Its mine its mine its all mine, hands off!!
Its just not fair I tell you!!!
I think I can I think I can I think I can...I know I can I know I can....
Ok Ok so Ive gained a little weight, so sue me!
Its mine its mine its all mine, hands off!!
Its just not fair I tell you!!!
I think I can I think I can I think I can...I know I can I know I can....
PICTURES
Im just plain cute arent I
Who me? I didnt do it!!!
Damn I knew I shouldnt of had that extra bottle!
Pst Glowie, I gatta tell you sompin!
Here I go being cute again!
Who me? I didnt do it!!!
Damn I knew I shouldnt of had that extra bottle!
Pst Glowie, I gatta tell you sompin!
Here I go being cute again!
BPD.. aka...Big Pain in the Derriere.....or "just keep swimming'......
So the best way I can describe BPD to anyone is to think of someone with emphysema and now think of my poor little 8 pound baby.....with emphysema. Here is a link with a very extensive description and outcome of BPD:
BPD
This disorder is extremely serious, and as we have seen, can be potentially deadly. If Thurston had a milder form, or if it resolved somewhat, he would have been home almost 3 months ago, around his due date which was June 4th. I have a bet going with my new Nicu friend, Questa(the coolest name ever) that her little one, whose due date is in 6 weeks, will be home before Thurston, and this will most likely be true. Her daughter was born at 26 weeks and weighed just an ounce more than Thurston, and has also has had some major and scary complications, BUT, she does not look like she will have BPD and actually weighs almost as much at 34 weeks than Thurston did at his due date(40 weeks). BPD takes so much out of a child that Thurston just burns more calories than he can take in, which is why he gains weight more slowly than most kiddos.
So yes they did put him back on the nasal cannula, but I have been extremely hesitant in posting this because, he is at the highest settings(5 liters) and his oxygen needs keep creeping up (in the 70s) so I am sure at some point, he may have to go back on cpap. If that is the case, we may have to talk about getting him a tracheotomy in order to get him home with a g-tube(two surgeries I just dread putting him through). If for some miraculous reason he stays on the cannula, then he would probably just need to stay put in the NICU for quite some time, he may even still be there by his March 8th birthdate. We of course are sad about our situation, and I try not to stop and think about it because if I do, I usually break down.
One of the hardest parts of having a child in the hospital for an indefinite and long time, besides the obvious(having him separated from you) is the inability to plan ahead. You watch as everyone elses' lives move forward....people take their spring breaks, then their summer vacations, enroll their children in dance classes, swimming lessons, preschools, etc. You are literally stuck in limbo. Chad and my anniversary came and went without as much as a harrumph, I dont even think we got each other cards, you just never know how the day is going to unfold, and then you just get so caught up in it all, you never get around to even belatedly celebrating it.....You cant really plan a vacation or even a short getaway, because you cant be away from your child in the hospital for that long. Hell we feel guilty when we skip a day here or there, due to illness or just pure exhaustion(you can only keep up this pace for so long before you get burnt out). You cant enroll your other child in anything because you have no idea when your other kid is coming home, and in Thurstons case, they have strongly advised us to keep Viola out of any kind of daycare, or any other activity that involves any close contact with other children and circulation of germs after he comes home which pretty much rules out, well almost everything. You also don't know when a crisis might hit and what little activities you do make you end up having to cancel (dinner date, birthday party) to go up and talk to the doctor, or just to see your son. Most people do not understand this pace, this crazy lifestyle, unless they have been through a very long hospital stay with a family member they have to see daily, for hours at a time. After 7 months of this whole ordeal(thats when we found out something was wrong with the pregnancy and then I had to go on bedrest)It has become very gruelling, unpredictable, tedious, scary and just plain draining.
I was just thinking last night I so wished we lived closer. Like 5 minutes away. I would be able to pop in several times a day on the weekends and try and find help here and there with Viola. The drive just takes a lot out of you.
So we are still no where near coming home, I wish I had more upbeat news about that. In the meantime, my boy is being well taken care of by his nurses who adore him. When I come into visit, sometimes Thurston doesn't even recognize me though and searches for those that take care of him day in and day out. That makes me a little sad, well alot sad really, but also grateful that his nurses truly treat him as if he was their own child, I couldn't be more happy about that. I keep trying to tell myself daily to, in the simple yet profound words of Dore from Nemo, "just keep swimming".....I just cant wait until we can finally reach the top of the ocean and both Thurston and I can breathe in a huge gulp of beautiful oxygen-filled air.
BPD
This disorder is extremely serious, and as we have seen, can be potentially deadly. If Thurston had a milder form, or if it resolved somewhat, he would have been home almost 3 months ago, around his due date which was June 4th. I have a bet going with my new Nicu friend, Questa(the coolest name ever) that her little one, whose due date is in 6 weeks, will be home before Thurston, and this will most likely be true. Her daughter was born at 26 weeks and weighed just an ounce more than Thurston, and has also has had some major and scary complications, BUT, she does not look like she will have BPD and actually weighs almost as much at 34 weeks than Thurston did at his due date(40 weeks). BPD takes so much out of a child that Thurston just burns more calories than he can take in, which is why he gains weight more slowly than most kiddos.
So yes they did put him back on the nasal cannula, but I have been extremely hesitant in posting this because, he is at the highest settings(5 liters) and his oxygen needs keep creeping up (in the 70s) so I am sure at some point, he may have to go back on cpap. If that is the case, we may have to talk about getting him a tracheotomy in order to get him home with a g-tube(two surgeries I just dread putting him through). If for some miraculous reason he stays on the cannula, then he would probably just need to stay put in the NICU for quite some time, he may even still be there by his March 8th birthdate. We of course are sad about our situation, and I try not to stop and think about it because if I do, I usually break down.
One of the hardest parts of having a child in the hospital for an indefinite and long time, besides the obvious(having him separated from you) is the inability to plan ahead. You watch as everyone elses' lives move forward....people take their spring breaks, then their summer vacations, enroll their children in dance classes, swimming lessons, preschools, etc. You are literally stuck in limbo. Chad and my anniversary came and went without as much as a harrumph, I dont even think we got each other cards, you just never know how the day is going to unfold, and then you just get so caught up in it all, you never get around to even belatedly celebrating it.....You cant really plan a vacation or even a short getaway, because you cant be away from your child in the hospital for that long. Hell we feel guilty when we skip a day here or there, due to illness or just pure exhaustion(you can only keep up this pace for so long before you get burnt out). You cant enroll your other child in anything because you have no idea when your other kid is coming home, and in Thurstons case, they have strongly advised us to keep Viola out of any kind of daycare, or any other activity that involves any close contact with other children and circulation of germs after he comes home which pretty much rules out, well almost everything. You also don't know when a crisis might hit and what little activities you do make you end up having to cancel (dinner date, birthday party) to go up and talk to the doctor, or just to see your son. Most people do not understand this pace, this crazy lifestyle, unless they have been through a very long hospital stay with a family member they have to see daily, for hours at a time. After 7 months of this whole ordeal(thats when we found out something was wrong with the pregnancy and then I had to go on bedrest)It has become very gruelling, unpredictable, tedious, scary and just plain draining.
I was just thinking last night I so wished we lived closer. Like 5 minutes away. I would be able to pop in several times a day on the weekends and try and find help here and there with Viola. The drive just takes a lot out of you.
So we are still no where near coming home, I wish I had more upbeat news about that. In the meantime, my boy is being well taken care of by his nurses who adore him. When I come into visit, sometimes Thurston doesn't even recognize me though and searches for those that take care of him day in and day out. That makes me a little sad, well alot sad really, but also grateful that his nurses truly treat him as if he was their own child, I couldn't be more happy about that. I keep trying to tell myself daily to, in the simple yet profound words of Dore from Nemo, "just keep swimming".....I just cant wait until we can finally reach the top of the ocean and both Thurston and I can breathe in a huge gulp of beautiful oxygen-filled air.
Sunday, August 22, 2010
If you want the rainbow, you must have the rain.....
If you want the rainbow, you must have the rain sung by one of my all time favorites, : Annette Hanshaw
So here we sit, 24 weeks later, 168 days, 6 months, longer than how long I was pregnant when I found out something was wrong with my pregnancy, and in three more weeks it will be as long as I was pregnant with him(27 weeks) which we will most definitely still be here. Chad and I were walking into the NICU today in disbelief at how long we have been doing this, driving to the hospital, climbing up the stairs to the second floor, pushing the button and waiting for someone to buzz us into the nicu, scrubbing up for 3 minutes, etc. but also, we are completely grateful that we ARE still doing all of this, especially in light of the last few weeks, we really get how lucky we are, so no complaining or whining here!!!!!!! Remember ye ol post of "it can always be worse"...well it got worse, and we are ecstatic that he is back on track. Right now my little Buster is 8 pounds 6 ounces, 22 inches, and his head measurement is 14 and 1/4 inches, his head circumference is now bigger than his height was at birth (11 3/4) which just amazes me how tiny he really was.
Right now he is doing swimmingly on the cpap. Today they got him down to a pressure of 5, 4 being the optimal point at which they would finally be able to switch him back to the nasal cannula, which could be sometime this week if his oxygen stays as low as it has been(between 25-40 percent). They tried to wean him off of the nitric oxide but his oxygen went up, so they decided to keep him at a rate of 5 and said they would also continue to give him the nitric on the nasal cannula which is fantastic as it helps to keep his lungs to stay open, and does not have any major side effects, so to get him back on the nasal cannula would be great as it is way more comfy. We also are able to hear his sweet little voice again, just barely, as when he was intubated it strained his throat and when he was extubated he loses his voice and he sounds like a kitten who has been smoking 2 packs of cigarettes a day. And most importantly, we get to cuddle again, and let him melt in our arms as he drifts off to sleep.
During all of this time we have had the lovely pleasure of a couple of folks, Janut and Jim, who have become dear dear friends of ours, and we hope to one day see them up in there home town of Seattle. They are amazing wonderful people and have done so much for us these last three weeks. They came at the most amazing time, right when Thurston took a turn for the worst and we are unbelievably grateful for all they have done for us, watching Viola, cooking up some great meals, cleaning, and most importantly, being great company and lending some wonderful sympathetic ears. Again, I am actually in the process of writing my thank you post, making sure I detail every single person who has helped us on this crazy journey that I will post once Thurston comes home. I say this time and time again but you will not meet more grateful people. We just cant believe the love and outpouring of support we have received and it has made me feel so wonderful about humanity in general. Hows them apples for you.
So yes its been a long journey and it is no where near being over, but ultimately, this has taught me so much, that in life sometimes going through something really bad makes you realize how lucky you are, how much you take for granted, how beautiful life is and can be. Sometimes if you want the rainbow, you must have the rain.
So here we sit, 24 weeks later, 168 days, 6 months, longer than how long I was pregnant when I found out something was wrong with my pregnancy, and in three more weeks it will be as long as I was pregnant with him(27 weeks) which we will most definitely still be here. Chad and I were walking into the NICU today in disbelief at how long we have been doing this, driving to the hospital, climbing up the stairs to the second floor, pushing the button and waiting for someone to buzz us into the nicu, scrubbing up for 3 minutes, etc. but also, we are completely grateful that we ARE still doing all of this, especially in light of the last few weeks, we really get how lucky we are, so no complaining or whining here!!!!!!! Remember ye ol post of "it can always be worse"...well it got worse, and we are ecstatic that he is back on track. Right now my little Buster is 8 pounds 6 ounces, 22 inches, and his head measurement is 14 and 1/4 inches, his head circumference is now bigger than his height was at birth (11 3/4) which just amazes me how tiny he really was.
Right now he is doing swimmingly on the cpap. Today they got him down to a pressure of 5, 4 being the optimal point at which they would finally be able to switch him back to the nasal cannula, which could be sometime this week if his oxygen stays as low as it has been(between 25-40 percent). They tried to wean him off of the nitric oxide but his oxygen went up, so they decided to keep him at a rate of 5 and said they would also continue to give him the nitric on the nasal cannula which is fantastic as it helps to keep his lungs to stay open, and does not have any major side effects, so to get him back on the nasal cannula would be great as it is way more comfy. We also are able to hear his sweet little voice again, just barely, as when he was intubated it strained his throat and when he was extubated he loses his voice and he sounds like a kitten who has been smoking 2 packs of cigarettes a day. And most importantly, we get to cuddle again, and let him melt in our arms as he drifts off to sleep.
During all of this time we have had the lovely pleasure of a couple of folks, Janut and Jim, who have become dear dear friends of ours, and we hope to one day see them up in there home town of Seattle. They are amazing wonderful people and have done so much for us these last three weeks. They came at the most amazing time, right when Thurston took a turn for the worst and we are unbelievably grateful for all they have done for us, watching Viola, cooking up some great meals, cleaning, and most importantly, being great company and lending some wonderful sympathetic ears. Again, I am actually in the process of writing my thank you post, making sure I detail every single person who has helped us on this crazy journey that I will post once Thurston comes home. I say this time and time again but you will not meet more grateful people. We just cant believe the love and outpouring of support we have received and it has made me feel so wonderful about humanity in general. Hows them apples for you.
So yes its been a long journey and it is no where near being over, but ultimately, this has taught me so much, that in life sometimes going through something really bad makes you realize how lucky you are, how much you take for granted, how beautiful life is and can be. Sometimes if you want the rainbow, you must have the rain.
Wednesday, August 18, 2010
please help me.....
Two preemie moms and their kids lie heavy in my heart and no matter what I am going through, I always think of them and their unbelievable struggles. One of the moms lost her child today. I write this with such a heavy heart. The other is still going through her journey and I am hopeful everyday that her child will pull through just like Thurston has on so many occassions.
If you could find it in your hearts to think about, pray, send good vibes, whatever it is that you do, they need a ton of support right now. Thank you so much.
If you could find it in your hearts to think about, pray, send good vibes, whatever it is that you do, they need a ton of support right now. Thank you so much.
Tuesday, August 17, 2010
That really sucked!!!!!!! and WHEW!!!!
Ok so no cutsie titles, puns, or cultural affinities, no song or book titles or film references..... I just want to say the last two weeks really SUCKED!!!!!! And I also want to add a big gigantic WHEW. Dr. Maverick as I like to call him, decided yesterday to try out Thurston, not on the regular vent, not on the cipap, but the cpap. Now for those of you not in the know, this is the linear order in which a preemie usually navigates the breathing process, as the vent gives a little less support than the oscillator, the cipap acts like a vent in that it helps gives breaths(usually like 15 a minute) but at a much lesser rate, and the cpap just gives a lot of pressure and is the same device that is used on people who have sleep apnea/snoring issues, so the person is breathing on their own but aides in giving the person constant pressure to help keep the lungs "open".
Anyway, the Doc called me yesterday and told me "well we decided to try Thurston on the cpap and so far he is doing pretty good". I about peed my pants. And just like that we went from 0 to 60 in the forward direction, much like we had in the reverse direction just 2 weeks prior. Basically, the doc said that Thurston got a bug that pulled the rug out from underneath him, he fought it and needed a lot of extra support while he was in battle, and now he is on the mend. That's how horrible it is when my bub gets sick, it truly is life or death, damn Chronic lung disease. So for now he is resting comfortably, doing pretty good on the cpap, and will just need some more time for him to recover completely, and a lot more time for his lungs to grow and heal to a point where he can come home safely, and we hope and pray he doesn't get sick anymore. That was just way too scary...You know they tell you that the NICU journey is like a roller coaster ride, well our particular journey has been more like a roller coaster ride where you reach the highest peak, right before you start the downward drop, and you realize your seat belt is broken.........yea good times good times!!!!!
Anyway, the Doc called me yesterday and told me "well we decided to try Thurston on the cpap and so far he is doing pretty good". I about peed my pants. And just like that we went from 0 to 60 in the forward direction, much like we had in the reverse direction just 2 weeks prior. Basically, the doc said that Thurston got a bug that pulled the rug out from underneath him, he fought it and needed a lot of extra support while he was in battle, and now he is on the mend. That's how horrible it is when my bub gets sick, it truly is life or death, damn Chronic lung disease. So for now he is resting comfortably, doing pretty good on the cpap, and will just need some more time for him to recover completely, and a lot more time for his lungs to grow and heal to a point where he can come home safely, and we hope and pray he doesn't get sick anymore. That was just way too scary...You know they tell you that the NICU journey is like a roller coaster ride, well our particular journey has been more like a roller coaster ride where you reach the highest peak, right before you start the downward drop, and you realize your seat belt is broken.........yea good times good times!!!!!
Sunday, August 15, 2010
"Smile" by Charlie Chaplin
Smile, though your heart is aching,
Smile, even though it's breaking.
When there are clouds in the sky-
You'll get by.
If you smile through your fear and sorrow,
Smile and maybe tomorrow
You'll see the sun come shining through
For you.
Light up your face with gladness,
Hide every trace of sadness.
Although a tear may be ever so near,
That's the time you must keep on trying,
Smile, what's the use of crying?
You'll find that life is still worthwhile,
If you just smile.
"Smile" is a song, originally used as an instrumental theme in the soundtrack for the 1936 Charlie Chaplin movie Modern Times. Chaplin composed the music(if I could figure out how to put music within the posts I would put this) http://www.youtube.com/watch?v=Ps6ck1ejoAw
lyrics were added in the 1950s and sung by many a crooner.......
side note: I was able to publish two more back posts entitled "welcome to the jungle" and "on the third day he rose again" in the March archives. It chronicles the first day he was born and the third day of his life".........
So we sit here almost 2 weeks after Thurston's downhill spiral and not a whole lot has changed. They have pretty much ruled out an infection of any kind which is the good news. The not so good news is he is still needing a ton of support to breathe and we just don't know what that means. They decided to do a third round of dexamethasone steroids on him, as his settings are so high on the oscillating vent that if we waited too long, well, it just might be too late. He is also getting lasix which is a diuretic to extract fluid from his lungs, so hope that will help as well. They have also started feeding him again, starting off at 5 ml every three hours and today they upped it to 10 so hopefully within a week or so they will be back up to full feeds and they can take his tpn out(total parental nutrition) where he has been getting nutrition through an IV. We also don't know how much he weighs as when kids are sick, they don't weigh them that much as they are just trying to maintain his survival, and even if they did, I just don't bother asking as there are so many other questions I usually have for the nurses and doctors.
The incredible news is that my sweet boy is acting totally and completely normal. He is playing, sticking his tongue out at you, looking at all of the nurses out of the corner of his eyes wondering what they are going to do to him next, and the best part is he is smiling. Yes my sweet boy started to smile, a developmental milestone I would have preferred happen when he didn't have a tube shoved down his throat, but it just melts my heart, tickles my cockles and proves to me over and over again what an incredible, beautiful, lovely child he is, that in the face of extreme adversity, he has found a way to smile through it all. And although I definitely have my sad days at seeing my poor son having to go through all of this over again, and dealing with the uncertainty of our immediate future, he is able to put a smile on my face too.
Subscribe to:
Posts (Atom)
