Monday, March 30, 2009
Since moving to the crib, Thomas has had some trouble maintaining his temperature. The very complicated and scientific solution to this is to pile on blankets, so that helps. He's also been Brady-ing and D-Sat-ing every now and then. Thomas' breathing had been a little erratic, sometimes he'll take shallow breaths or just forget to breathe at all for 10 seconds or so. The result is the Oxygen Saturation level goes down and eventually leads to D Sat. D Sat means that your Oxygen Saturation drops below an acceptable level. Low Saturation can then lead to Bradying. Brady means your heart rate temporarily drops very low. I'm not sure why they call it Brady, but every time I hear it, I can't help but think about the Brady Bunch, can't explain it, was never a big fan, except for when they went to Hawaii and found the cursed tiki statue and one of the Brady's fell off his surf board and... anyway, I do. I don't think Thomas is in any danger, but they don't want him to continuously bounce up and down on his settings.
Part of the problem has been that Thomas' nose was stuffed. Basically, sucking oxygen through his nostrils has made them dry and given him nose bleeds. Those nose bleeds have turned into clots and stopped up his nose. Once they were able to get those out yesterday, he's done much better with fewer Brady episodes (giggle).
The third issue is an on-going one that I don't think I've mentioned. Thomas' platlets are low and slowly keep going down, kind of like an oil leak. So they have periodically put in another quart of platlets (not really a quart, but you know). The doctor cannot explain why this is happening. He's run all of the tests he knows, and can't figure out why this is occurring. Its not an immediate issue and if it doesn't clear up, he'll have to go to a Hematologist. There isn't an immediate risk, if he was to get cut, it would bleed more than normal.
The low body temperature may lead him back to an isolet for a little while. We will see. But we've gotten to hold him a bunch and his eyes seem to be recovering well. He likes to show them off alot and will lay there and just stare and look around and smile. Its pretty dang awesome.
Finally, an awesome bonus video of Thomas sneezing! Don't forget to check out youtube. Ive added a bunch up there as well. http://www.youtube.com/results?search_type=videos&search_query=melliot22&search_sort=video_date_uploaded
Saturday, March 28, 2009
We got the call yesterday morning that they decided to take him off of Si Pap. We were really excited and a little surprised. I didn't think it would happen that soon. The nurse said that Thomas was immediately happier and looking around, showing off almost.
We went up and saw him and I held him for a while. He's really starting to come into his own. Not afraid to discuss things when he's not happy. The next step was to get him into a crib, which we thought would happen in the next day or so, once he proved he could maintain his vitals with the new change. But Thomas had his own thoughts on the matter...
The next thing that happened is a bit graphic in nature. You have been warned.
Rebecca and her nurse were changing Thomas' diaper and we had just been discussing that we could ask to have Thomas moved to a crib today (Saturday) if it hadn't already happened, but that we would wait the rest of the day yesterday to make sure everything was fine. Thomas, um, took advantage of his freedom and performed a bodily function all over the isolet, as boys will apparently do if you're not careful (I believe its recommended that you place a towel over them, just in case). Rebecca and the nurse also took some shrapnel. I was at safe distance, doubled over in laughter. So, since Thomas had determined that the isolet was no longer inhabitable, and the crib was probably less than 12 hours away anyway, there was no choice but to go to the crib then.
Since he's in the crib, he's exposed to the elements of the NICU, and no longer has a personal heater. Rebecca now gets to play dress up (I'm so sorry Thomas).
So there you go. The story of Thomas and the crib. He's still 3 pounds 12 ounces, but because of the blood transfusion Thursday and the nasal canula yesterday, he's had to miss a few feedings.
A little blog clean up. Apparently you can only have so many pictures in a photo album, which somehow we exceeded. I know, doesn't seem possible, we're so judicious about the pictures we take and share. So there is now a second album on the left here which picks up in March. A little easier to maneuver probably.
Wednesday, March 25, 2009
Sunday, March 22, 2009
I know, I know, there's just no win in this hypothetical. It just seems cruel all the way around.
I chose the hospital, mostly because it was a girl's only shower and I wasn't invited. There will be a couples shower at some point and I may not be able to hide out at the hospital the next time. And before anyone gets up in arms, I think I have the silent backing of many fathers out there.
Yesterday turned out to be a very long day. The plan was to go up to the hospital at 11:30, sign the release, laser his eyes at noon, see him at 1. Go home at 1:30, my parents go to the airport, Rebecca's parents check in to Che Elliot, Rebecca scoots off to her shower with her mom and her sister (Yes, Leigh was in Dallas! And there was much rejoicing) , I enjoy a beautiful Saturday outside. Sounds like the perfect plan, no?
We rushed up there at 11:30 to sign the release, but we had no doctor and Thomas' nurse had not heard from him yet. So we waited for an hour with no news. It turned out that the doctor had been called in for emergency surgery. False start. So everyone goes home, we make the parental swap, Rebecca goes to her shower and her dad and I sit by the phone and wait. The call comes at around 2. We go up there, go in, see Thomas, doctor arrives 2 minutes after we get there, laser in tow, I sign the release, doctor says I'll see you in an hour. We enter the waiting room and settle into the whirlwind of activity. At 4:30, Rebecca calls because I hadn't called her to tell her things were all done and all was well. Rebecca's uncle came up to the waiting room and gained us a small victory by getting the community tv put onto the NCAA basketball tournament. Rebecca, her mom and her sister showed up as well. We then became one of those families, taking up lots of the room and adding to the background noise.
Around 2 hours into it, we were able to find out that the doctor had finished the first eye and was starting on the second. This was a bit too much for Rebecca, who naturally started to get scared and assumed the worse. The whole operation is supposed to take an hour and we're well into the second hour. After days of worrying about this and making the right decision, it became a little bit too overwhelming. I tried to stick to my philosophy of not worrying about something until someone tells me there's something to worry about. That's just the kind of Rosy, glass half full kind of guy I am. Ignorance is bliss. I think that's why I like cartoons so much.
Finally the doctor came out and let us know that everything went fine and Thomas was good. It took a long time for a few reasons. First and foremost, Thomas is very fair, no pigmentation. That apparently does not help the laser, so it takes a longer time. Because it took so long , they had to give Thomas breaks to allow his vitals to stabilize. In the end all was well. We visited with Thomas for a while. He was still recovering from the drugs, but doing great.
Rebecca and her mom went back up later that night to see him and because Thomas had apnea ed a couple times. This is not uncommon, due to the trauma, the drugs and just being tired. Not very cool though. He had to be resuscitated at least once. Thomas' nurse was able to adjust his settings and he's doing much better.
Very long day...
Rebecca spoke to Thomas' doctor today. Since we had originally elected to enter the study, Thomas' info had been sent down to Houston and he was randomized. It turns out that had Thomas entered the program, he still would have gotten the surgery. Since his information was there, the doctor asked if we would still participate in the program as part of the control group. Thomas doesn't have to do anything else, but his information will help determine if the injections are viable in the future. We made the right choice and Thomas still gets to help.
Friday, March 20, 2009
Basically, if we chose the injections, we'd be enrolling Thomas in a clinical study that has only been commissioned in the last 10 months. The injections appear to be more effective and less invasive. The laser potentially limits peripheral vision and can lead to myopia (extreme near-sightedness). The only problem is, no one can say if there are any other side effects or long term issues associated with the injecting the drug. That's why the study is being conducted. This could very well be the standard for addressing this issue in the near future. Complicating our decision is that Thomas does not have a strong lineage of eagle eyes on either side of his family. I'm the only person in either of our immediate families that has not had eye issues and Rebecca, at one time, was basically legally blind without the aid of very strong lenses. So we're both very sensitive to anything sight related.
Enough of the boring old facts. This is what was laid out in front of us. The doctor who would perform either option is one of the most well respected specialists in the country. He very much believes in the study. The funny thing is even if we enter the study, there's still a 50/50 chance Thomas would end up in the control group and still get the laser. This was extremely difficult for both of us. There really is no clear answer, and that really sucked. We went back and forth several times. Actually told the doctor one thing and then changed our minds several hours later. You just don't want to make a decision and then find out that its the wrong one. Its a very frustrating thing. But its also not really in our control.
This is new territory for me. When it comes to me, I'm a risk taker by nature and I would most likely opt for the riskier option with the greater upside. I also believe that things will work out, one way or the other and that it does little good agonizing over things that you can't control. Being responsible for someone else, truly responsible, where they can't speak for themselves, requires me to think completely differently.
In the end, we decided to play it safe. Its a decision that we both feel comfortable with and hopefully will sleep well tonight on. I know Rebecca is mentallyand emotionally drained by all of this. They've been using the laser for many years, and though there is certainly potential for some vision issues, the unknown was just too daunting. So, tomorrow at 11:30, they will laser Thomas' eyes. The procedure will take about an hour.
Tomorrow I will discuss with you what Thomas is facing with his eyes and what we decide to do.
Good night everybody.
Wednesday, March 18, 2009
Much like a military brat, Thomas has once again moved. The nurses are having to play musical isolets to accommodate new visitors and deal with construction. Thomas is now in the South wing in Nursery D, in the corner. Its nice because its more spacious than the the last nursery and we're told that Thomas will not have to move again. Of course moving can always be very traumatic for children and I'm sure Thomas will be no exception, saying goodbye to old friends, trying to make new ones, new school system, and don't get me started on trying to get him onto the right soccer team this late in the season.
Thomas had his eye exam today and to be honest, it was not great. He has R.O.P. (which apparently does not stand for Rock On Preemie). R.O.P. is an overgrowth of blood vessels, typically caused by all the extra oxygen that he's been given. It can effect your peripheral and/or central vision. He's at a stage 3 with a possibility of retinal detachment. This isn't really that uncommon with preemies, but it wasn't news we wanted. Over the next 48 hours we will be deciding between surgery and injections. The surgery involves lasering the blood vessels and hoping that they don't grow back, which can happen and require further lasering.
The thing that we learned with the injections (and we don't know that much yet about the procedure) is that its really new. Apparently Baylor is only one of two hospitals trying this, so the long term effects aren't fully known. The good thing with the injections is it is a drug, Avastin, that has been used for other purposes (cancer treatment I believe) for a long time. The benefit of the injections is it would be less traumatic than the surgery. As I mentioned yesterday(?), Rebecca met the parents of a child who has just gone through the injections procedure successfully. We'll let you know.
Tuesday, March 17, 2009
Thomas has gotten big enough where they can start using the little nose plugs occasionally to breathe, rather than the full snorkel. This gives him a break, which is important, because at this age, any constant pressure can lead to head misshaping. That is also why Thomas is constantly being rotated like a rotisserie chicken. They try not to let him sleep on one side for more than 4 hours at a time.
This weekend, Rebecca went to Shreveport to pay homage to her sister again (she loves when I mention her). She was also allowed to carve out a small portion of the weekend to focus on the upcoming nuptials for a baby shower for Thomas, who appears to be well on his way to being spoiled. Thank you to everyone who was there and shared our excitement for Thomas. I sadly missed the baby shower (dang it, dang it, dang it), but spent my time trying to shape up the nursery. This included putting together a rabbit hutch for the current tenant of Thomas’ room. Bunny rabbit, Mopsy, will find a new home just outside of Thomas’ window, so they can still kind of hang out.
I will have another story tomorrow…(hopefully)…
Friday, March 13, 2009
So its been another busy week. We're having a tough time adjusting to Rebecca having to go back to work. Its difficult to fit everything into one day, especially now that Thomas is growing and interacting with us. I know for certain that Rebecca would like to hold him for hours at a time.
I believe that much of what we're feeling and going through can be compared to the experiences of any new parents. We're tired alot, there's too much to do. Its easy to get frustrated and overwhelmed. Days and weeks slip away in the blink of an eye. And in the end, nothing matters but your child. I also know that its different for me than it is for Rebecca. She's got a connection with Thomas that will probably one day be a source of anguish for her when Thomas does not put as much care and thought into his well-being as Rebecca. I know I've done that to my mom and I've certainly seen Rebecca do it to her's. So everyone please hug or call your mom and tell them even if you don't agree with them, you really appreciate how much they care.
On to Thomas. Its been a busy week for him as well. Due to construction, Thomas was on the move once again. NICU H is a little on the crowded side and kind of out of the way, but I don't know if Thomas can tell much of a difference. There are one or two roommates that cry quite a bit, so we're hoping Thomas looks down on that sort of behavior and sees that reasoning and mature exchange of thoughts and ideas is the best way to get what you want. In the interest of milestones though, the video above is of Thomas crying, just a bit, and very quietly. I had to get the camera up real close for you to hear him. He does not cry very often and has a really good disposition. I posted two more videos on youtube where Rebecca is bathing him and he is totally cool, just laid back and hanging out. http://www.youtube.com/watch?v=AqT3JOALqh0 and http://www.youtube.com/watch?v=XRE2jq7eZWA.
Thomas also got an eye exam Monday and there may be some issues with his sight. There's nothing to worry about yet. At some point, they may need to do Lasics surgery (you'd think I'd know how to spell that, since Rebecca is in the eye business). Although there's nothing that can be done about it now, we still spent alot of time worrying about it. Thomas also had another Neuro scan and everything looked really good.
Finally, Thomas' growth is still slow, so he's in a low percentile. Dr. Kwan thinks it will take a few years to catch up, but he doesn't foresee any long term issues. But what's he weigh you ask? Well I'm glad you brought it up. The big, big news is that Thomas now weighs 3 POUNDS! I know! He looks like a sumo wrestler in waiting. He's gained a pound less than 2 weeks. I was going to project out based on that rate, but that joke has been played. I'm all about originality.
We're looking forward to the possibility of Thomas getting off the Sy Pap next week. We'll see.
Sunday, March 8, 2009
You can find the rest of them here. http://www.youtube.com/results?search_type=&search_query=melliot22&aq=f I posted 15 videos and it tracks the number of views, so if you don't watch all of them, I'll know.
Thomas is doing really well. He's a little puffy, which may indicate that he's retaining fluids, but, most everyone thinks that most of his weight gain is his own. He is holding steady at 2 pounds and 12 ounces. He's breathing really well and hanging out. I did also get to see the fabled smile. It could have been hiccups, but the facial muscles were all in the right place. I'm going to have to vote him as cutest baby ever. I took a lot of time weighing the pros and cons, and there were many deserving candidates, but in the end I was forced to admit the obvious and choose my son.
Wednesday, March 4, 2009
I leave for 2 days...;
I hope he doesn't have a random drug test;
A bigger baby ate my baby;
But I just went with Wow. That's because Thomas is now 2 pounds, 12 ounces, up 6 ounces from just 2 days ago, and from what Rebecca tells me, he looks huge! I don't think its so significant that we've considered the thumb stomach, but I'm watching him. He's also 14 inches long. Thomas is feeling much better and was wide awake and smiling and staring at Rebecca today when she held him.
Unfortunately, Rebecca was solo, so there were no pictures of this supposed smile. We are left to trust that this smile occurred, much like we trust in the existence of the Loch Ness Monster, Big Foot and Wilt Chamberlain's 100 point game through eye witness accounts.
Rebecca also saw the lead doctor, Dr. Kwan, who was very pleased with Thomas' progress. He also smiled (again, no video proof). He said that the infection is under control. He also said that if things keep going the way they are, he may take Thomas off of the Si-pap next week, which seems really soon, but who knows.
Yesterday was a travel day for me, so I did not do as I promised and describe our ring side seat as Thomas got a new roommate Sunday night. So without further ado:
To the right, is the "portable" unit that was used to bring in the new baby. Its quite a sight. The blue box is where the baby goes. (Do you think that's the way they describe it when they're training nurses on this contraption? "The baby goes here."). Its significantly larger than the isolets, but its a little more self-sustaining.
The really interesting part is the all-hands-on-deck fire drill (very organized fire drill) that occurs when this thing rolls in. There was a sense of anticipation and tension leading up to the moment. Then the unit rolled in with a flurry of activity and a blur of arms. At the highest point, I think there were 7 nurses and 1 doctor surrounding the bed and it looked like everyone was doing something.
Its also kind of neat that every other nurse (I'm guessing it was all of them, I didn't do a head count) that was on duty came by to check out the new arrival. Its really been interesting watching the inner workings of the NICU.
Monday, March 2, 2009
While we all ponder that, Thomas has been busy getting through his first major infection. Early indications are that Thomas has Strep. Fortunately, it appears that due to the diligence of an unnamed nurse, it was caught early and anti-biotics were started. They also put Thomas on Dopamine to help his blood pressure. Since then, Thomas has started to recover and they've put him back on formula. So, as of tonight, Thomas weighs 2 pounds 6 ounces. Hopefully Rebecca will get to hold Thomas again in the next day or two.
Thomas got another new roommate tonight. I will describe that scene tomorrow.
Happy Birthday Thomas!
Sunday, March 1, 2009
Well, I think I gave you too many clues, but good job anyway. When we visited Thomas last night, he was sacked out. He'd had a full bath and dressing change and was sleeping off all of the activity. He barely moved while we there, which is not necessarily out of the ordinary. The nurse watching him throughout the night decided that there might be something wrong though and early this morning she called in the doctor.
So the doctor made a house call (chuckle, guffaw). Dr. Baetiong called to let us know that Thomas might have an infection. They are running a culture, which takes 24 to 72 hours to get results and in the mean time, she started anti-biotics. If its an infection, which it looks like it is, and its the right strain/anti-biotic match, he could start responding this afternoon. They may need to try a different anti-biotic otherwise. Everything else looks good. His blood-gas came back good and they gave him a transfusion to help his white blood cells and platelets, which were both low.
As usual, I'll let you know if there are any updates.