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This page is in support of those with premature babies and need an outlet like me. Here is where I'll share my problems and solutions. Like everything web based, it will be updated. But feel free to email me.
Rubin was born 1-26-96, 11 weeks premature. His mother went to a regular doctor's appointment and never left. It was urgent, but they were carefully watched for 2 days while steroids were given to help Rubin's lung development before he was born. Just after he was born and before he was taken to Neo Natal Intensive Care (NICU) unit, I saw him, and he made a cry I hardly expected at such a premature age. We almost lost him early next morning when a valve near his lungs (that was suppose to remain closed after birth) reopened and he could not get enough oxygen. He was put on a jet ventilator (500 breaths a minute). It save his life, but even it had side effects
Well, he spent 101 days in NICU. It was a time of many ups and downs. When he finally came home May 6 1996, he was on 16th liter per minute O2. We even had to spend the weekend before at the hospital in one of their private rooms playing mommy and daddy where we could get immediate help. Along with the O2 he was on a continuous heart and respiration monitor and an arsenal of medications. It took 45 minutes just to get through them all during any one time of administering. I referred to it as nuking, cause we threw everything we had at him. We had to administer the meds four times a day. With one time being 2:00 in the morning. Along with normal baby bedtime routines, included was the strap with the monitor leads for heart and respiration, which went around his chest. Trying to fit this on him in the night while disturbing him as little as possible was a task. Often enough during the night we would get the alarm waking us. It was never a real alarm, just the leads needing to be reset. He did stop breathing on us twice, but we were at his side already and recognized it right away. In june his mother got Chicken Pox. After being exposed to it several times during her pregencey (and getting a special shot as well), she finally got them. And to our surprise, we kept Rubin from getting them. When his mother did have to tend to him, it was with gloves. Very much impersonal, but we had to.
As winter was coming, the season for respiratory diseases was approaching. Then Rubin's Doctor started him on this Respagam program (IV of something to fight contracting RSV). That's when things got worse. The IV solution was a blood product. This was the start of the problem. The Respagam was started around Thanksgiving and he started his decline in eating. By Christmas, he had stopped eating altogether. These prompted tests and an immediate NG (Nasal Gastro) tube feeding. It turned out that he tested positive for both hepatitis A & B. It's unknown if he just got the antibodies for them from the Respagam or actually contracted it. But along with the hepatitis, he was teething, the Respagam treatment it's self has some side effects, and the steroids he was receiving was changed to a stronger one just that month. The steroids them selves often cause red throats, and he had that now as well. Hepatitis effects the appetite so we don't know what to blame.
This period of time was one of much throwing up. As Rubin could not hold much more then 30 cc's in 2 hours. Even then he would throw-up at times. This would occur as much as 6 times a day. This was not a normal baby's spit-up either. The carpet and sofa got it good. This got old quick. Little did I know at the time it was to last for 8 months. Imagine TUBE feeding a baby all the time. During the night we got up every 2 hours to tube-feed Rubin until we finally got a pump to use at night. This just added more preparation for bedtime. Get him into his pajamas and monitor band, and get the pump filled and attached to his tube. During that year we dared to go to San Diego and LA since his mother had a business trip there. Picture us tube-feeding Rubin in the middle of Disneyland :) not to mention the medication. It was our attempt to normalize our lives and show Rubin things he never saw before. One thing we noticed on our trip was that Rubin would eat well in the car (not tube feed). Shortly after returning from the trip, he came off the NG tube. This was a relief, but it was not to last.
When he started to take other food, we found out he liked strong flavors. He would drink pickle juice straight. We spiced his other food with garlic (cinnamon for fruits). We looked for any food with high calories. In the days of diet foods, this was hard. His food has always been supplemented with calorie boosters (microlipids and something else).
Well, it's June now. He got sick weeks ago and stopped eating. He went back on the feeding tub for a week and a half. But then it got worse 2 weeks after that. He's now on the feeding tube with no end in sight. Tests are scheduled, but not soon enough. He started a school a few weeks ago for 2 hours twice a week. It's good for him to get out and see other kids as he has been kept from contact for health reasons. We've also let him outside more during the summer. He loves it. And hates to come back in. Poor Rubin
He has now had some of his tests, and is being treated for reflux. O2 has been increased to 1/2 liter to help divert calories from maintenance, into growth. And now a G tube is being seriously considered. A feeding tube surgically placed in his stomach. But on the bright side, he is now starting to say words he hears.
Gastrostomy surgery is tomorrow. Tests eliminated the need for Nissen, but the G tube is going in. I've heard that this is harder on the parents, but I've seen terror in Rubin's eyes before. I hope we can comfort him.
Well, it's done and other then throwing-up once when put back on food, all went well. He is now climbing furniture and throw tantrums. He has a rubber tube out of his stomach for 4 weeks then the "Button" will be put in. This should help us. No putting NG tube in every week, and it makes it safer to feed at night, not to mention less irritation in his throat. Using a pump helps. Were trying to get his feeding up to a decent amount in one sitting.
Rubin got his "Button" put in last Wednesday. They just pulled out the rubber tube he had in him since surgery. No anesthesia, just yanked it out. It bleed a little. Putting the button in was easy enough. Was a little resistance going in. A balloon (on the inside) inflated with water holds it in place. Over all, this is better. But there for a while, daily dressing changes were a bit uneasy. He would start to cry just before the dressing change, knowing what was about to happen. I thought it would be very hard to connect the feeding tube to his button every time we feed him after all the pain he had with dressing changes. But if he is enlisted to help, like hold the other end, he will tolerate it enough to get it connected. Still the nights are a little scary. With this thing sticking out of his stomach and him rolling around at night. . .well, you get the idea. We put tape over the button (and the connected feeding tube) to help protect it from getting caught during the night. Of course this adds MORE TAPE to the ordeal. But the alternative is worse.
Been a long time since last update. We've gotten used to the button now and so has he. He has not impoved eating much. But does put food in his mouth and chew (then spit out). Some he does swallow. He likes to help with his feeding by pushing the surynges. In August he was in an auto accedent with his nurse. You could open the trunk without leaving your seat. He was in his car seat in the back yet there was no bruses or cuts. And he has never complained of pain or discomfort during that time. He has also had 2 ear aches, those are hard to get rid of.
Two weeks before Christmas we ended up in the emergency room at the hospital. He was in enough pain to cause him to arch severly. It was suggested by the nurse on call to go directly to ER as it could be appendix. Seven hours latter we found out to our surpise and delight that it was just constipation. It was a surprise cause he has been some what regular. This was an extreme case and I do not know how it could get this bad without seeing an indicator. Anyway, since then we've been fighting constipation. It's turned out to be as much a problem as ear achs. Last week he had his 4th birthday party. I was taking pictures and after he blewout the candles, he put his face INTO the cake and took out a bite. Much like you expect on babies first birthday. And in my surprise, I hollered for him to not do that. After all, we had others at the party. Then I caught myself thinking, if he was going to eat, LET HIM. And just as suddenly, I realized I had the camera and was doing nothing. Well, I caught a good picture and will get it posted soon. It seems he is eating more on his own, just a bit.
Well, Doctor has approved taking him off O2 during day waking hours. Its been this way for 2 weeks. We monitor his "Sats" and it runs around 94 (dipping to 88 and rising to 100). He has lost a pound since then so he may be redirecting his energy to breathing.
Ok, so it’s been a long time since I last updated.
I’ll just start with his current condition. He is STILL not eating. He is still on O2 at night. And he still has a ’G’ tube in his stomach. We’ve been seeing a psychologist and he has us doing oral therapy 3 times a day. Basically we bribe him (reward) for eating so much in a fixed period of time. His rewards are stickers, which he cashes in for something he wants. This is generally pre-determined in order for him to know what he is working for. We started with him taking 10 bites in an hour. Sounds simple huh? NOT. But it was working. We are up to 20+ in less then 30 minutes, and often he does way better then that. I’ll give him more time to eat more if it looks like he is headed that way.
Now I know every parent is gonna mock this next note, but keep in mind, his condition. He had some stomach bug over Christmas (yes, so did we. Good thing we caught it one at a time so there was always someone to care for others). And before you say ’Stupid, why didn’t he get a flu shot?", he DID. This year flu shots came late, but he got one a month before he got this bug. It was during Christmas no less. It was very hard to see Rubin throwing-up every 15 minutes for 5 hours. But come morning, he was better. After he gets sick, we spend much time getting his tube feedings back up as he usually can’t hold much. But this time it went a bit better.
Development wise it does not look wonderful. Not BAD, either. What I noticed was when he tried to put a puzzle together, a boy a year younger (doing same puzzle at same time) did MUCH better then he. Rubin did not persist in trying to find the right place for the puzzle piece.
Oh, and he STILL refuses to use the potty. He’s 5 years now and I am still changing diapers. I took away his computer telling him only boys who can go potty can use computers. This did not change his mind. As much as I like having my son play computer games (after all I have programmed games and enjoy playing them myself), I am trying NOT to break down. This is HARD for me, believe me.
Potty is going better, but he hates that word, so he came up with "Power House"...don't ask cause I don't know. He now has his computer back. Eating and "Power Housing" is still a bribe thing. But when I saw an add for Train Simulation program I thought, he likes trains. I could bribe him with time playing this game. It was intended to be installed on his computer, I still don't like giving up mine. But the program was resource intensive, too much for his. But that worked out better. So it's installed on my computer. He still gets his "stickers" for eating and PowerHousing (BTW, he cashes these in for things he wants), but he gets 10 minutes play time on Train Simulator for exceptional attempts at eating and PowerHousing. This means he has to feed himself and do it in a timely manner. This is a judgement call on my part. But their should be more motivation now since when he gets Train time, he also gets Dads full attention, gets to play on Dads computer, and gets to sit in Dads chair. He always has wanted to play on Dads computer even though his has all he needs. Too early to say if this is working well.
His recent purchase with his stickers was a "Kirby" vacuum cleaner. YES a REAL working vacuum cleaner. He has a fascination with vacuums. This one HAD to be Kirby, from the "BraveLittle Toaster".
He has an appointment July 2, for an overnight stay at the hospital for monitoring. It will determine if he is healthy enough to be taken off Oxygen during the night. He expressed fear understandably, but he calmed down a bit after we explained he may not have to be on oxygen.
Well, he had his over night stay in the hospital, only it was a day late due to University of New Mexico Hospital's poor management. They were short of "Beds", or so they say. So we spent the night of the 3rd (and morning of the 4th). Those results were unconclusive. To put it short, he is still on O2 during the nights. The test showed his heart rate swinging all night long. It goes down as low as 48. While we can explain it going high due to his medication, we can't explain it going low. It did show his sats were in acceptable range through the night. We had an additional test the other day to look into his heart as a result of the over night. He was wired to a monitoring device for 24 hours. The results of this showed nothing of concern. So, he stays on O2 for now till the Doctors consult together. But we have be told it's ok to keep him of O2 while at sea level, which is where we will be July 27- Aug 6. Taking another business trip with wife and making a vacation out of it again. And Disneyland is on the agenda again. This time he should enjoy it more. As will we since he won't be on O2 and his afternoon nebs have been ended. Still will be feeding him through tube all day, but...oh well, can't have it all.
"Power Housing" is much better. He still refuses to use anything other then his own toddler size "Power Housing". He will not try standing either. Makes it hardhen we go out places. But very few accidents.
Well, we returned from our vacation August 6. We had a great time. We stayed at the Bajia Hotel just 1/2 miles from Sea World. We went to Sea world and the Zoo while in San Diego. During time wife was at her conference, I took Rubin in a canoe in the bay near Sea World. He loved it. The big event through the vacation was him using the public "Power Houses". And each time he asked, "Does it have sensors?" <grin> He hates the noise and it scares him when it goes off unexpectedly. But it was so great to have him use the public restrooms, that he got quite a large Penguin out of us.
After wife's conference, we went to Disneyland. He visited a lot of the characters. Goofy was playful. He was taking Rubins hat from him. And I just hate what I did. It seems while shooting the video, I missed hitting the record button <frown>. I did get a small shot, but that it.
As for his health, he seemed to do well without oxygen even through the nights (doctor ok'ed him to go without oxygen during nights at sea level). In fact, he had more energy in the mornings then he ever did. And the fact that he lasted through the days without any naps is amazing. On another matter, he was not remembering the names of people we would introduce him to. I mean it was really bad. And it was people we were staying with so he had plenty of time to learn thier names.
Well, Saturday we spent till early Sunday in the emergency room. It seems Rubin tried to subdue the coffee table buy hitting it with his face. It bled a lot and he cried immediately, doctor says this is good. I know most kids do this kind of thing, but it seems different when it is your own son. His grandmother is a nurse and is visiting us for a week. It was thought he might need stitches. But I would like to see them try :) heheh. They would have to first get past his defenses. And those have been developing well over the past 5 and a half years. As it turned out, like all "Emergency" Rooms, you know the ones, where you "Wait"? (they should be called "Waiting Rooms") it was some time before they got to Rubin. By then he was asleep. Instead of a stitch, they used Dermabond to glue the wound close. And it all happened while he was sleeping. Yes he stirred a bit, but he didn't even remember them doing anything.
2/3/2003, 7 years old and 35 lbs.
It’s the pits not keeping track all this time. No way I can make up for it. So I will just cap what has happened since.
I will start by saying he has had his 7th birthday last weekend.
Several sleep studies included monitoring his O2 sats. He was having more sleep disturbances then normal. So they scheduled him to have his tonsil’s removed. They thought it would also help him breath better. This seems to have helped.
Eating has been very slow. But it has happened. We have not tube feed him in a month. He has lost a lb or 2, but it has leveled off. Still eats slow. And the G-tube will not be removed any time soon.
He is in kindergarten and doing well. Somedays he has bad time breathing and needs to stay inside during school, but he seems to take care of himself and do what he needs to do. Like his puffs.
He is no longer on O2 at all . Still has bad times breathing, but his puffs give relief fast.
He is a kind soul. When he sees us not feeling well, he is quick to give us one of his many stuffed animals for comfort. He also gives us plenty of hugs.
2/14/2005, 9 years old and 42.5 lbs.
Weight is still a problem. He looks like a wet cat.
September 30, 2003 Jessica Rush, a friend of Rubin's died of cancer. It was a great loss, and for this to happen to a child is hard to comprehend.
...The Saga Continues...Current Picture
Here is a link for helpfull information on Early Childhood Development.