I've learned you gotta take the good and take the bad and put them together and then you get the facts of life but today was definitely one of the good ones. Anthony and I have been going on walks at our new place a lot but lately between him getting sick, me getting sick and the rain we just haven't been going. Well that changed today when on a whim I decided we should go for a walk.
Anthony picked his balance bike and got his helmet on and off we went with Kim and Ashley in tow. Anthony's been getting better and better on his balance bike but today his skills increased.
Not only was he one-legging it most of the ride but he was also do a lot of coasting with no legs! This is huge for a kid who has had major balance issues.
And then there was Ashley, shes just my everything and has constantly given us a different experience than the one we had with Anthony.
I made sure I told Kim that I was happy about the move today because these moments of clear emotional feelings are still sometimes few and far between.
Monday, October 25, 2010
Thursday, September 9, 2010
Its Happening
Results came back today on Anthony's thyroid and it's just outside of the normal range so the Bio Doctor doesn't know if an Endocrinologist will think its a big deal. I think they will however since thyroid issues run on my side, 12 in all. So now we wait until October 5th to see the Endocrinologist. In the meantime here's some sweet music to my ears.
Saturday, August 28, 2010
The other shoe drops?
For sometime we've been working with therapists, doctor's etc. to figure out why Anthony is delayed in his speech. Looking back all was well in Anthony's first year, noises and mimic sounds were all around then sometime around 2 years he just stopped. Everyone told us it was normal and he'd start up again but he didn't. Kim started him up with a speech therapist but all she ever did was talk loudly to him and never came when she was supposed to. Really how are you supposed to help someone when you can't keep a schedule and because of it he wouldn't be getting therapy on a regular basis.
Next Kim switched him to a different therapist one where we'd have to go in to their office. The sessions started occurring on a regular basis but still not any improvement. Somewhere along the line the possibility of Anthony being tongue tied was brought up. Sure enough we take him to the doctor and she breaks his tongue tie on accident just trying to get him to stick his tongue out.
Therapy continued but still not much change. Next the therapist suggested we get his ears checked. Weird we thought, they were checked regularly while he was in the NICU and he's never had ear aches but sure enough we go into the doctors office and he has fluid filling them. One ear had no hearing and the other 75% was gone. Great how did this happen? Anthony gets a appointment made to get tubes put in.
With the tubes put in we were told he'd catch up fairly fast and while there was some improvement it still was not enough. Anthony was still very spastic and getting him to pay attention most days was just to much for anyone to handle. This is where the first mention of Anthony possibly having Verbal Apraxia.
I love my wife where others give up she digs in and turns to Google and her internet moms to do more research. Now since she has a disorder she goes to work researching everything about it and by the end she knows more the most doctors she speaks to.
The Verbal Apraxia diagnosis gets changed to Verbal Dyspraxia due to some of Anthony's motor skill issues that go along with it. The good news is he doesn't seem to have it as bad as it could be but it will be a long road to treat it. We also learn that Verbal Dyspraxia is usually a sign of something else being wrong. Then we find it, its his diet! We take him to a Bio doctor that specializes in the disorder and others on the Autism spectrum.
The consultation lasts 3 hours, the doctor notices a distended belly button, Anthony's pale grayish skin and his yeasty walk. Due to my recent starting of B-12 methylcobalamin (not cyanocobalamin) and how much better it makes me feel it is decided the apple doesn't fall far from the tree and Anthony is prescribed B-12 shots, a low to no yeast/diary diet and a whole panel of tests. The doctor explains that they like to work these cases backwards and start with the parents but since I just recently discovered I was not absorbing B-12 cyanocobalamin correctly and started the methylcobalamin and was feeling much better (depression gone, clearer thinking) that this was a great place to start.
With the diet in place and the B-12 shots twice a week we immediately see a big change. Anthony goes from a handful of words to 60+. Anthony's attention is much improved he now plays pretend in his room or on the patio for hours on end. Oh and he now has rosy cheeks! More news as of yesterday we got some of the test results back it seems Anthony's thyroid is not working correctly so we can add Hyperthyroidism to the list. This makes sense it runs in my family and this is also good news. If this diagnosis holds up through the next set of tests this could be the source of Anthony's speech development issues!!
Next Kim switched him to a different therapist one where we'd have to go in to their office. The sessions started occurring on a regular basis but still not any improvement. Somewhere along the line the possibility of Anthony being tongue tied was brought up. Sure enough we take him to the doctor and she breaks his tongue tie on accident just trying to get him to stick his tongue out.
Therapy continued but still not much change. Next the therapist suggested we get his ears checked. Weird we thought, they were checked regularly while he was in the NICU and he's never had ear aches but sure enough we go into the doctors office and he has fluid filling them. One ear had no hearing and the other 75% was gone. Great how did this happen? Anthony gets a appointment made to get tubes put in.
With the tubes put in we were told he'd catch up fairly fast and while there was some improvement it still was not enough. Anthony was still very spastic and getting him to pay attention most days was just to much for anyone to handle. This is where the first mention of Anthony possibly having Verbal Apraxia.
I love my wife where others give up she digs in and turns to Google and her internet moms to do more research. Now since she has a disorder she goes to work researching everything about it and by the end she knows more the most doctors she speaks to.
The Verbal Apraxia diagnosis gets changed to Verbal Dyspraxia due to some of Anthony's motor skill issues that go along with it. The good news is he doesn't seem to have it as bad as it could be but it will be a long road to treat it. We also learn that Verbal Dyspraxia is usually a sign of something else being wrong. Then we find it, its his diet! We take him to a Bio doctor that specializes in the disorder and others on the Autism spectrum.
The consultation lasts 3 hours, the doctor notices a distended belly button, Anthony's pale grayish skin and his yeasty walk. Due to my recent starting of B-12 methylcobalamin (not cyanocobalamin) and how much better it makes me feel it is decided the apple doesn't fall far from the tree and Anthony is prescribed B-12 shots, a low to no yeast/diary diet and a whole panel of tests. The doctor explains that they like to work these cases backwards and start with the parents but since I just recently discovered I was not absorbing B-12 cyanocobalamin correctly and started the methylcobalamin and was feeling much better (depression gone, clearer thinking) that this was a great place to start.
With the diet in place and the B-12 shots twice a week we immediately see a big change. Anthony goes from a handful of words to 60+. Anthony's attention is much improved he now plays pretend in his room or on the patio for hours on end. Oh and he now has rosy cheeks! More news as of yesterday we got some of the test results back it seems Anthony's thyroid is not working correctly so we can add Hyperthyroidism to the list. This makes sense it runs in my family and this is also good news. If this diagnosis holds up through the next set of tests this could be the source of Anthony's speech development issues!!
Tuesday, August 17, 2010
Last Day at Gymnastics
Today was Anthony's last day of gymnastics and what would be the first time I get to see him in class. I've been told he's gotten better since the first time he went. Well today in general hasn't been such a good day.
I took today off on a whim, to spend some time with the family and to get a couple of errands done. After all weekends are short enough as it is. Parenting conflicts erupted when I try to step in and parent one way while Kim's been doing it another. I get it, she has something that works for her I just wanted to try something on my own. I guess I made her feel like shes not valued or something which is totally not the case. I just feel like I'm hardly around the kids and want to feel like I contribute something more then money but I digress.
Anthony's been off and on potty training and since the recent stool samples and blood tests are done I put him back in his big boy underpants today thinking I would help jump start this thing again. Well first he poops in his pants and calls for mama and so I go in there to see him frozen in place. Not good. I take him to the potty and ask him continually "why?". After all he was doing this like a pro a week ago. He then proceeds to pee outside the toilet. Great he's the only kid I know that can pee on the toilet seat, under it, on the floor and on himself all in one go. He just laughed when I started asking him why. This doesn't help.
Back into another pair of under pants he goes and runs off on his way only to later in the day pee his pants. I try to be strict but it just doesn't work because he thinks its a game. Then the temper starts, looking back I can't remember what set it off, whether a car didn't line up just right or what but he gets sent to his room.
There he is kicking, hitting and screaming in his room all while his poor sister tries to sleep in one of the quiet moments we have around here. This sets me off. Why can't she get a chance to sleep like he does. UGH. At that point I make a move to go in there and at least get him to stop beating on the door, that's all I need to pay for. Overstepped boundaries again. Kim finds leaving him in his room to cry it out works best I just want him to be quiet for his sister.
Next up Kim takes him to go pee before gymnastics and he throws a total fit again. By now she's reaching the end of her patience and tells him you got 2 minutes. He screws around and we end up leaving 10 minutes later to the YMCA.
At the YMCA I'm eager to see what Anthony has learned and can do but he is a total wreck running here and there and bumping into people. I'm sad. He's the outcast and that hurts me. He is such a special kid I don't want him to be left out. We try to give it a go and keep him in the class but finally we just pull him and go home.
This is depressing, and the part that makes me sad the most is socially I can see him going down the same path I did and I know the pain that comes with that. I'm just hoping this new diet and supplements hes on gives him the chance to lead a better social life then I did.
I guess I'm still somewhat in denial about him being perfectly normal and never going to have anymore issues for the rest of his life.
On a side note Ashley got her first and the following day her second tooth. Exciting! Man is she growing up fast!
I took today off on a whim, to spend some time with the family and to get a couple of errands done. After all weekends are short enough as it is. Parenting conflicts erupted when I try to step in and parent one way while Kim's been doing it another. I get it, she has something that works for her I just wanted to try something on my own. I guess I made her feel like shes not valued or something which is totally not the case. I just feel like I'm hardly around the kids and want to feel like I contribute something more then money but I digress.
Anthony's been off and on potty training and since the recent stool samples and blood tests are done I put him back in his big boy underpants today thinking I would help jump start this thing again. Well first he poops in his pants and calls for mama and so I go in there to see him frozen in place. Not good. I take him to the potty and ask him continually "why?". After all he was doing this like a pro a week ago. He then proceeds to pee outside the toilet. Great he's the only kid I know that can pee on the toilet seat, under it, on the floor and on himself all in one go. He just laughed when I started asking him why. This doesn't help.
Back into another pair of under pants he goes and runs off on his way only to later in the day pee his pants. I try to be strict but it just doesn't work because he thinks its a game. Then the temper starts, looking back I can't remember what set it off, whether a car didn't line up just right or what but he gets sent to his room.
There he is kicking, hitting and screaming in his room all while his poor sister tries to sleep in one of the quiet moments we have around here. This sets me off. Why can't she get a chance to sleep like he does. UGH. At that point I make a move to go in there and at least get him to stop beating on the door, that's all I need to pay for. Overstepped boundaries again. Kim finds leaving him in his room to cry it out works best I just want him to be quiet for his sister.
Next up Kim takes him to go pee before gymnastics and he throws a total fit again. By now she's reaching the end of her patience and tells him you got 2 minutes. He screws around and we end up leaving 10 minutes later to the YMCA.
At the YMCA I'm eager to see what Anthony has learned and can do but he is a total wreck running here and there and bumping into people. I'm sad. He's the outcast and that hurts me. He is such a special kid I don't want him to be left out. We try to give it a go and keep him in the class but finally we just pull him and go home.
This is depressing, and the part that makes me sad the most is socially I can see him going down the same path I did and I know the pain that comes with that. I'm just hoping this new diet and supplements hes on gives him the chance to lead a better social life then I did.
I guess I'm still somewhat in denial about him being perfectly normal and never going to have anymore issues for the rest of his life.
On a side note Ashley got her first and the following day her second tooth. Exciting! Man is she growing up fast!
Friday, August 13, 2010
The aftermath
After all we went through to get Anthony home you'd think all would be few things go as planned.
During the first month of Anthony being home I was still out of a job and the stress was mounting. Everyone was now on COBRA insurance. Since I was the only one who could get insurance on my own I was forced to continue coverage with the previous company or go it with no coverage. It was painful paying that $1,200 a month with no income coming in. In the meantime Anthony had about 2-3 doctor visits every week so it was easy to keep busy.
When downtime did occur I was hit with horrible depression and the night feedings were the worst. I remember several times during the night where I'd be feeding Anthony and just breaking down and crying. At the time I thought it was just exhaustion because of how Anthony took bottles. You see he was on a good schedule, every 3 hours on the dot he'd wake up to eat but for him to finish a bottle of 1-2 oz. it would take him an hour or more. Many a sunrise was seen while sitting in his rocking chair trying to get him to suck down a bottle. Then there were the nights that he'd be so exhausted that half way through he'd fall asleep and we'd have to get him naked just to try and wake him up. Looking back on it besides him being a preemie and weaker then normal kids his age 2 additional things could of been at play here: 1. the bottles and nipples the hospital gave us were crap 2. years later we find out Anthony is tongue tied.
Those night feedings came and went and Anthony was sleeping through the night but I was still not feeling OK. By now I had starting working again and I thought I'd be feeling better or at least thats what I told Kim. The depression was getting worse and I started breaking out in shakes at night. The shakes were like the ones you would get with fevers but my temperature was fine. I'd shake until the hairs on my arm would hurt and my body was sore and then it would stop. Kim being the good researcher she was Google'd me up something saying I was probably deficient in vitamin B-12 so I started a regimen of vitamins and some V8. All seemed well for a month or two and then my stomach started acting up.
At first we thought I might be lactose intolerant so I started taking lactaid but when that was no longer cutting it I went and saw a Doctor. I told him how my stomach would bloat until it looked like I was pregnant and how I would spend the rest of the night vomiting all my stomach contents. He recommended a Gastroenterologist and they scoped me.
That in of itself was scary as it was the first time I'd ever been put out for anything. That and I was alone because Kim had to be at home with Anthony since we were still keeping him away from the public.
When I was woken up the nurse went over the findings. I was the proud owner of 3 ulcers: one at the top of the stomach, one in the stomach and one at the end of the stomach. Finally I could get something to treat this.
With the stomach thing done the depression continued. Most days I'd be fine but then I'd sit and just out of no where this overwhelming despair would set in; That and I was mean and very short tempered. Kim noticed this and there was many a fight.
I started going to therapy and like always after a week or two things would be better again.
We all knew what this was it was me not grieving when we loss Hailey. All I had of her was the few 4D ultrasounds. I just could never come to terms with how she was not here. I've really only come to terms with this 6 moths ago when we had another little girl come into our lives our daughter Ashley.
Ashley has done a lot to heal those wounds and anger I felt having lost Hailey. That said however not a day goes by that I still don't remember Hailey and all that she had done for her brother. I still tear up thinking of her and questioning why? Why couldn't I protect her, I'm her dad after all and we protect our little girls from harm.
That said I now see that no matter what, when tragedies happen you must deal with your emotions. You must feel them. Sure you can be strong for your partner but you must go through the event yourself. You can't just put your feelings aside. Your body always finds a way to get them out whether its depression, ulcers, and other weird things that bodies do.
During the first month of Anthony being home I was still out of a job and the stress was mounting. Everyone was now on COBRA insurance. Since I was the only one who could get insurance on my own I was forced to continue coverage with the previous company or go it with no coverage. It was painful paying that $1,200 a month with no income coming in. In the meantime Anthony had about 2-3 doctor visits every week so it was easy to keep busy.
When downtime did occur I was hit with horrible depression and the night feedings were the worst. I remember several times during the night where I'd be feeding Anthony and just breaking down and crying. At the time I thought it was just exhaustion because of how Anthony took bottles. You see he was on a good schedule, every 3 hours on the dot he'd wake up to eat but for him to finish a bottle of 1-2 oz. it would take him an hour or more. Many a sunrise was seen while sitting in his rocking chair trying to get him to suck down a bottle. Then there were the nights that he'd be so exhausted that half way through he'd fall asleep and we'd have to get him naked just to try and wake him up. Looking back on it besides him being a preemie and weaker then normal kids his age 2 additional things could of been at play here: 1. the bottles and nipples the hospital gave us were crap 2. years later we find out Anthony is tongue tied.
Those night feedings came and went and Anthony was sleeping through the night but I was still not feeling OK. By now I had starting working again and I thought I'd be feeling better or at least thats what I told Kim. The depression was getting worse and I started breaking out in shakes at night. The shakes were like the ones you would get with fevers but my temperature was fine. I'd shake until the hairs on my arm would hurt and my body was sore and then it would stop. Kim being the good researcher she was Google'd me up something saying I was probably deficient in vitamin B-12 so I started a regimen of vitamins and some V8. All seemed well for a month or two and then my stomach started acting up.
At first we thought I might be lactose intolerant so I started taking lactaid but when that was no longer cutting it I went and saw a Doctor. I told him how my stomach would bloat until it looked like I was pregnant and how I would spend the rest of the night vomiting all my stomach contents. He recommended a Gastroenterologist and they scoped me.
That in of itself was scary as it was the first time I'd ever been put out for anything. That and I was alone because Kim had to be at home with Anthony since we were still keeping him away from the public.
When I was woken up the nurse went over the findings. I was the proud owner of 3 ulcers: one at the top of the stomach, one in the stomach and one at the end of the stomach. Finally I could get something to treat this.
With the stomach thing done the depression continued. Most days I'd be fine but then I'd sit and just out of no where this overwhelming despair would set in; That and I was mean and very short tempered. Kim noticed this and there was many a fight.
I started going to therapy and like always after a week or two things would be better again.
We all knew what this was it was me not grieving when we loss Hailey. All I had of her was the few 4D ultrasounds. I just could never come to terms with how she was not here. I've really only come to terms with this 6 moths ago when we had another little girl come into our lives our daughter Ashley.
Ashley has done a lot to heal those wounds and anger I felt having lost Hailey. That said however not a day goes by that I still don't remember Hailey and all that she had done for her brother. I still tear up thinking of her and questioning why? Why couldn't I protect her, I'm her dad after all and we protect our little girls from harm.
That said I now see that no matter what, when tragedies happen you must deal with your emotions. You must feel them. Sure you can be strong for your partner but you must go through the event yourself. You can't just put your feelings aside. Your body always finds a way to get them out whether its depression, ulcers, and other weird things that bodies do.
Wednesday, August 11, 2010
An Intro - part III
With Anthony recovering Kim and I could finally breath a sigh of relief.
During Anthony's stay at UCLA he was put back on a normal ventilator, instead of the osolating one he was used to. This we believe caused the most damage to his under developed lungs. This damage we would later see in X-Rays involved having 80% of his lungs being nothing but scar tissue. Scary as it was we were assured later by his Pulminologist that by the time he was older this 80% would be a lot smaller and as long as we kept him from getting sick the worse he would have to worry about is he'd need to run with the fat kids because of a decreased lung capacity.
Then there was the incident that made us hate UCLA. The evening after his surgery Anthony's nurse, a student, warned us that he wasn't peeing as much as he should. She then told us all the bad things that could be happening, Kidney's shutting down etc. It was a lot to listen to especially after just having him go through a surgery. Kim and I had to leave and catch a breather. When we cam back up an hour later we were surprised and happy to learn that Anthony was peeing correctly it seems that when they put the catheter on him (basically a condom with a tube) it was not on all the way so the urine caught in the bag was just a small amount and his diaper was overflowing. I just wanted to ask the nurse WTF she was thinking putting us through this extra stress without checking his diaper first.
After the weekend I ended up going back to work and Kim and I continued to make the trip to visit Anthony everyday at UCLA until our week was up and he was delivered back to our NICU.
Looking back on it now the days and weeks started to fly by. With Anthony's PDA taken care of he started to gain weight and with the weight gain he was getting healthier. Anthony's ventilator settings were getting lower, he was moved from his Cadillac (Giraffe Isolate) and his feeds were now coming from a bottle.
Being a preemie Anthony naturally had some digestion issues which but it was helped greatly by switching him to a partially digested formula made by Similac Almentium.
When Anthony first came to the NICU he started all the way in the right hand side of the room, where the really sick kids go and when he was finally able to go home he'd be on the left hand side. He was now in the middle. Kim and I were now being invited to help change his diapers and give him baths all in hopes of getting us ready for the big day!
Then something unexpected happened, I lost my job. The company I was working at at the time was in the sub-prime loan business and well we all know how that ended up. Not only did I have a son in the NICU I now had to worry about money coming in and the inevitable rise in health insurance costs.
Then the night of our sleep over came, before a kid can go home from the NICU the parents must first room in with the kid and take care of them through the night. We started the night by picking some food up on the way to the hospital. This was going to be fun, our kid was finally going to come home tomorrow! But the night would be a reminder that preemies are unpredictable.
Anthony spent most of the night up in pain, he was having some major gas pains something that the nurse was telling us was that he was just hungry and kept having us give him food. Sure he was eating it but that wasn't the problem. I ended up sleeping for a couple of hours with my hand on his stomach and armed draped over his bed railing. This seemed to help. Kim has mentioned frequently since that she doesn't know why we just didn't bring him into the bed but we were noobs and this was new to us. The alarms went off several times during the night but we didn't think much of them. Anyone who has spent time in the NICU will tell you you get used to the alarms, you learn to read the readings and visually confirm the kid is alright.
The next morning however the nurse came to pick Anthony up and we went home to prepare for Anthony's iminate arrival. Then we received a call. It was a nurse from the NICU, Anthony was havings A & B's (Apnea & Bradycardia). It had been awhile since he had had these, so the homecoming was postponed a week while he recovered from the night before.
The week ended and it happened, Anthony came home!
All told Anthony spent 91 days in the NICU, had one surgery to fix a PDA, multiple EKG's, X-Rays, Ultrasounds, a chest tube, eye exams, two ambulance rides, healed a grade one brain bleed, some minor seizures and countless other things. He also had a price tag $1+ million but he was worth every penny to us the health insurance might say something different but screw them.
Anthony left the hospital weighing 6lbs, needing oxygen, an apnea monitor full time, breathing treatments and needing 3 different medicines through out the day. This was really the best case scenario for us we were happy and overwhelmed. We knew that the battle wasn't over but at home he would thrive.
We owe everything we have to those NICU nurses and we make a visits every year since to visit with them and to donate clothing and toys. They were our family for the longest time. They were the ones that comforted us during the ups and downs. They were the ones that saved Anthony's life.
Prologue
Anthony remained on the oxygen for awhile until the day came he woke up with the oxygen tube wrapped around his neck and then the doctor agreed it was time to go.
The apnea monitor was a pain but it was a safety blanket. It really only went off a couple of times but those were user error.
The medicines Anthony slowly came off of and it was nice not having to play chemistry in the middle of the night.
The NICU also had Anthony on a nice schedule, feedings every 3 hours on the dot.
Then one of my favorite days ever came when Anthony was finally free of all the tubes and wires and we finally had our little boy all to ourselves.
During Anthony's stay at UCLA he was put back on a normal ventilator, instead of the osolating one he was used to. This we believe caused the most damage to his under developed lungs. This damage we would later see in X-Rays involved having 80% of his lungs being nothing but scar tissue. Scary as it was we were assured later by his Pulminologist that by the time he was older this 80% would be a lot smaller and as long as we kept him from getting sick the worse he would have to worry about is he'd need to run with the fat kids because of a decreased lung capacity.
Then there was the incident that made us hate UCLA. The evening after his surgery Anthony's nurse, a student, warned us that he wasn't peeing as much as he should. She then told us all the bad things that could be happening, Kidney's shutting down etc. It was a lot to listen to especially after just having him go through a surgery. Kim and I had to leave and catch a breather. When we cam back up an hour later we were surprised and happy to learn that Anthony was peeing correctly it seems that when they put the catheter on him (basically a condom with a tube) it was not on all the way so the urine caught in the bag was just a small amount and his diaper was overflowing. I just wanted to ask the nurse WTF she was thinking putting us through this extra stress without checking his diaper first.
After the weekend I ended up going back to work and Kim and I continued to make the trip to visit Anthony everyday at UCLA until our week was up and he was delivered back to our NICU.
 |
| First family photo |
Being a preemie Anthony naturally had some digestion issues which but it was helped greatly by switching him to a partially digested formula made by Similac Almentium.
When Anthony first came to the NICU he started all the way in the right hand side of the room, where the really sick kids go and when he was finally able to go home he'd be on the left hand side. He was now in the middle. Kim and I were now being invited to help change his diapers and give him baths all in hopes of getting us ready for the big day!
Then something unexpected happened, I lost my job. The company I was working at at the time was in the sub-prime loan business and well we all know how that ended up. Not only did I have a son in the NICU I now had to worry about money coming in and the inevitable rise in health insurance costs.
Then the night of our sleep over came, before a kid can go home from the NICU the parents must first room in with the kid and take care of them through the night. We started the night by picking some food up on the way to the hospital. This was going to be fun, our kid was finally going to come home tomorrow! But the night would be a reminder that preemies are unpredictable.
Anthony spent most of the night up in pain, he was having some major gas pains something that the nurse was telling us was that he was just hungry and kept having us give him food. Sure he was eating it but that wasn't the problem. I ended up sleeping for a couple of hours with my hand on his stomach and armed draped over his bed railing. This seemed to help. Kim has mentioned frequently since that she doesn't know why we just didn't bring him into the bed but we were noobs and this was new to us. The alarms went off several times during the night but we didn't think much of them. Anyone who has spent time in the NICU will tell you you get used to the alarms, you learn to read the readings and visually confirm the kid is alright.
The next morning however the nurse came to pick Anthony up and we went home to prepare for Anthony's iminate arrival. Then we received a call. It was a nurse from the NICU, Anthony was havings A & B's (Apnea & Bradycardia). It had been awhile since he had had these, so the homecoming was postponed a week while he recovered from the night before.
The week ended and it happened, Anthony came home!
All told Anthony spent 91 days in the NICU, had one surgery to fix a PDA, multiple EKG's, X-Rays, Ultrasounds, a chest tube, eye exams, two ambulance rides, healed a grade one brain bleed, some minor seizures and countless other things. He also had a price tag $1+ million but he was worth every penny to us the health insurance might say something different but screw them.
Anthony left the hospital weighing 6lbs, needing oxygen, an apnea monitor full time, breathing treatments and needing 3 different medicines through out the day. This was really the best case scenario for us we were happy and overwhelmed. We knew that the battle wasn't over but at home he would thrive.
We owe everything we have to those NICU nurses and we make a visits every year since to visit with them and to donate clothing and toys. They were our family for the longest time. They were the ones that comforted us during the ups and downs. They were the ones that saved Anthony's life.
Prologue
Anthony remained on the oxygen for awhile until the day came he woke up with the oxygen tube wrapped around his neck and then the doctor agreed it was time to go.
The apnea monitor was a pain but it was a safety blanket. It really only went off a couple of times but those were user error.
The medicines Anthony slowly came off of and it was nice not having to play chemistry in the middle of the night.
The NICU also had Anthony on a nice schedule, feedings every 3 hours on the dot.
Then one of my favorite days ever came when Anthony was finally free of all the tubes and wires and we finally had our little boy all to ourselves.
Thursday, August 5, 2010
An Intro - part II
Read Part 1
After being delivered Anthony was immediately rushed to the NICU nurses in the room and they started clearing his lungs. After a brief check over they moved him across the hallway to the NICU. I followed and left my wife in the delivery room while they finished up.
Upon entering the NICU I was immediately given paperwork to sign before they could begin anything. I felt like I was signing his life away, which I was; giving them permissions to hook him up to this and that. At first things looked great, Anthony was more or less breathing completely on his own and was very responsive but later we learned that this is what they call the honeymoon period.
I was very proud, I was a father after all! The nurses continued their work while I watched it all go by. By the time they were done it looked like he was hooked up to one of everything.
At the time I wasn't worried, call it me being naive or just in denial.
After some time I left Anthony to the nurses and went to find my wife. I told her about how big and strong he was and all that had conspired. I could tell she was nervous she had seen him after all but our expectations were still high. It took her a day to come to terms with what had just happened and she made her first of many NICU visits to see him.
I on the other hand was busy showing him off to the family that had come down. Taking them in one by one and having to wash our hands over and over again. At the time I couldn't tell but they were all really worried, he was small, he was early, he just had so much equipment. On one such visit I witnessed what appeared to be a seizure, I told the nurse and they marked it down. I made the mistake of telling Kim this.
Days went by and the reality started setting in. We were getting doctor reports on a regular basis and learning new terminology. It was discovered Anthony had a grade 1 brain bleed. More tests ordered. Anthony was kept heavily sedated because the outside world was too much for him. He was to sensitive. Touching him had to be on his terms. if he tolerated it we could touch him firmly. If it started bothering him we had to stop. Next up it was discovered that Anthony had a Patent Ductus Arteriousus (PDA) but everyone was hopeful it was close on its own.
My wife came home, it was bitter sweet having to leave Anthony at the hospital but he was in good hands. Kim and I would visit him every day and call the hospital every night after his bath to see how he was doing. I remember having arguments on who would call, neither one of us wanted to because we were afraid of what the doctors would say.
Then the day came, July 4th. Anthony's PDA was not getting any better. It had been a month since he was born and he now weighed 2lbs. It was decided he needed to have surgery to fix the PDA and he would have to go to UCLA to have it done. So there we were following our little miracle in an ambulance to a new hospital.
UCLA was different, the NICU busier. It was scarier then the new norm we had gotten used to at our NICU. The nurses weren't just nurses but student too!
The surgery was scheduled for the next day. It was scary following Anthony on his stretcher to the underbelly of UCLA. We followed him as far as we could. The nurses came out to wheel him into the surgery room. It was there that this whole experience started to finally hit me. Kim and I stood and watched as they wheeled our 2lb. baby away. I stood strong Kim needed me to be strong or so I told myself.
What seemed like days past and then finally the doctor came upstairs to see us. I'll never forget his face, something had happen and it was bad. Well no not really, I guess the guy just has a sour face all the time. I guess that can happen to you if you have to perform surgeries on 2lb. kids. Anthony did well and made it through the surgery he was now on the mend.
Read Part 3
After being delivered Anthony was immediately rushed to the NICU nurses in the room and they started clearing his lungs. After a brief check over they moved him across the hallway to the NICU. I followed and left my wife in the delivery room while they finished up.
Upon entering the NICU I was immediately given paperwork to sign before they could begin anything. I felt like I was signing his life away, which I was; giving them permissions to hook him up to this and that. At first things looked great, Anthony was more or less breathing completely on his own and was very responsive but later we learned that this is what they call the honeymoon period.
I was very proud, I was a father after all! The nurses continued their work while I watched it all go by. By the time they were done it looked like he was hooked up to one of everything.
At the time I wasn't worried, call it me being naive or just in denial.
After some time I left Anthony to the nurses and went to find my wife. I told her about how big and strong he was and all that had conspired. I could tell she was nervous she had seen him after all but our expectations were still high. It took her a day to come to terms with what had just happened and she made her first of many NICU visits to see him.
I on the other hand was busy showing him off to the family that had come down. Taking them in one by one and having to wash our hands over and over again. At the time I couldn't tell but they were all really worried, he was small, he was early, he just had so much equipment. On one such visit I witnessed what appeared to be a seizure, I told the nurse and they marked it down. I made the mistake of telling Kim this.
Days went by and the reality started setting in. We were getting doctor reports on a regular basis and learning new terminology. It was discovered Anthony had a grade 1 brain bleed. More tests ordered. Anthony was kept heavily sedated because the outside world was too much for him. He was to sensitive. Touching him had to be on his terms. if he tolerated it we could touch him firmly. If it started bothering him we had to stop. Next up it was discovered that Anthony had a Patent Ductus Arteriousus (PDA) but everyone was hopeful it was close on its own.
My wife came home, it was bitter sweet having to leave Anthony at the hospital but he was in good hands. Kim and I would visit him every day and call the hospital every night after his bath to see how he was doing. I remember having arguments on who would call, neither one of us wanted to because we were afraid of what the doctors would say.
Then the day came, July 4th. Anthony's PDA was not getting any better. It had been a month since he was born and he now weighed 2lbs. It was decided he needed to have surgery to fix the PDA and he would have to go to UCLA to have it done. So there we were following our little miracle in an ambulance to a new hospital.
UCLA was different, the NICU busier. It was scarier then the new norm we had gotten used to at our NICU. The nurses weren't just nurses but student too!
The surgery was scheduled for the next day. It was scary following Anthony on his stretcher to the underbelly of UCLA. We followed him as far as we could. The nurses came out to wheel him into the surgery room. It was there that this whole experience started to finally hit me. Kim and I stood and watched as they wheeled our 2lb. baby away. I stood strong Kim needed me to be strong or so I told myself.
What seemed like days past and then finally the doctor came upstairs to see us. I'll never forget his face, something had happen and it was bad. Well no not really, I guess the guy just has a sour face all the time. I guess that can happen to you if you have to perform surgeries on 2lb. kids. Anthony did well and made it through the surgery he was now on the mend.
Read Part 3
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