Thursday, March 11, 2010

New Pics

I noticed the other day that all of the pictures to the left are from the first 6 months of Thomas' life. So I thought it best to add another slide show. We're a semi-camera happy family, so I started to load up pics backwards from the hospital story backwards. 900+ photos later, I was able to get back to October 30th. That's 4 months if you're wondering. Some day we'll look back and wish we'd done a better job of documenting Thomas' formative years and he'll look back completely stunned at all the things we put him through for the sake of a photo.

Sunday, March 7, 2010

A Good problem

Its Sunday night, Thomas, Rebecca and I are all home. I had to scoot out of town Friday and got back this afternoon. In the meantime, Thomas got his release papers Friday afternoon. I had hoped it would work out and I got the word on my way to the airport. Friday morning, Thomas was really starting to come around. He stopped completely rejecting the idea of a bottle and took 30 ccs for me. Rebecca and her mom took over as I ran home to pack and mercifully, they let Thomas go home.

A curious thing happened sometime in the last couple weeks, between the 2 surgeries and the recoveries, Thomas became a mama's boy. Its not something I've talked about much here, because its been a very raw subject for Rebecca. A shortened pregnancy, 6 months in the NICU and the need for both of us to work has been very tough on Rebecca. Despite an amazing ability to put forward a strong front for the public. she's always expressed a disconnect with Thomas, afraid that he didn't see her any different than the nurses or the nanny. I always argued against this, because I could see Thomas respond in very unique ways to Rebecca. But despite my best efforts, Rebecca would blow off my observations, believing that I was only trying to make her feel better (I did want her to feel better, but I told the truth). It was very difficult to witness and just that much more difficult for her to go through. Its been a weekly, sometimes daily discussion and more often than not led to tears.

I don't know if others who have had to watch their child raised in a NICU feel a similar disconnect. Rebecca always said that she lost a bond with Thomas because he was taken from her early. I can logically argue all I want as to how bonds are constantly forming and evolving, but this is an emotional thing that isn't easily resolved by reason.

Its a weird thing, because as a father, traditionally speaking, we're not afforded a defined nurturing role. As much as you may want the whole thing to be a partnership, in the end, its not quite equal. You're not the mother and you can't present any sort of argument to the contrary. I've found it to be frustrating and difficult to relate to Rebecca. Probably, because as a father, I have no choice, the bond I create with Thomas is defined in the actions I take and my ability/willingness to be involved with his life. So it has always been difficult for me to relate to something that she's not sure she has, when I'm not afforded it in the first place. I don't know if that makes any sense or just came off like a psychology text book, but it felt good to write it, so there.

I have always known, never doubted, that Thomas knows Rebecca and me above all others and that he loves us, as much as an infant can love. I believe Rebecca knew it as well, but nothing about what we've gone through is normal and so there is always that constant pang, what did we miss? How is this different than what it would have been under normal circumstances? Thomas has decided to change the paradigm a little bit. He has become extremely clingy to Rebecca. Especially this weekend, he's now most content in her arms and reaches for her when he sees her, even if MeAnn is already holding him. Rebecca is taking great joy in it (we'll see in a week how much fun carrying Thomas is at all times). Its really cool to see.

I don't think there is any such thing as normal when it comes to pregnancy, child birth or child rearing (hence all the grossly inaccurate and/or generic books that are available for your enjoyment), but at least for the moment, I'm very happy that Rebecca feels like a "normal" mom.

Friday, March 5, 2010

Thomas' foot

Here's a quick little video of Thomas discovering his foot.

Friday Feeding update

Thomas took 30 ml of formula this morning! That's not very much, but its the first time he's shown any interest in the bottle, so I'm pleased. They also just took the IV off, so hopefully Thomas will get thirsty and we can get out of here.

Thursday, March 4, 2010

Thursday night

I'm in Thomas' room laying on my favorite couch, which has been my home for the last two nights, and feels oh so inviting for this evening as well. Thomas is asleep, which hopefully will continue through the evening, minus the nurse visits to prod and poke. Last night he did fairly well, the night before not so much. I'm pretty tired, which has made it difficult to generate the energy to give an update. As such, I'm not going to format this entry and place the pictures judiciously within context.

Basically, all we are waiting on now is for Thomas to drink some formula, something he is absolutely not interested in. he's moving around good, sitting up, kicking, eating baby food. Just no liquids. He's on an IV, so that may be working against him. Never the less, he can't go until he does. Its fairly frustrating for all of us. As much as I love seeing Rebecca for an hour or so a day and sleeping on a piece of furniture that can be wiped down, we're ready to go home. Thomas is ready to go home, but he's stubborn as well and he knows what he wants and what he doesn't and there's no reasoning with him.
The last 2 days have steadily gotten better. Rebecca and her mom are doing the day shift, when Thomas is awake. Since he's bed-ridden, its up to them to keep him entertained, which is very draining. He's actually becoming somewhat demanding. He'll drop tears on you in a second if he doesn't have exactly what he wants in his hand. Hopefully this is temporary and he'll go back to his sedate self when we get back home.
I drew the night shift. The first night was very rough. Thomas was still in pain and despite being very tired, couldn't sleep. The slightest noise would make him stir and then subsequently cry. there was an hour stretch where he would dose off, get a body spasm, jerk back awake and cry, over and over. Finally, we decided to give him some drugs and he settled down. Last night was much better, he pretty much slept constantly between nurses visits, as did I. Its very disconcerting waking up and there's a nurse already in the room checking vitals.
Neither shift is good, and its been a little tough passing each other at night and in the morning. Fortunately, Rebecca and I went out to dinner while her mom stayed with Thomas last night and tonight. Two nights in a row of just the 2 of us eating at the same time in the same room is very rare. I could get used to it though.
Its late, so I'm going to grab some sleep while I can.

Tuesday, March 2, 2010

Video Update from Thomas

Well its 10:30 at night and Thomas woke up and wanted to address his public. The quality isn't great, but if you watch all the way through, he has some important words.

9 p.m. update

I'm sitting in Thomas' room listening to him talk and complain and occasionally cry a little. He's a little grouchy and not crazy about having a board taped to each hand. They ran an IV in each just in case and so in addition to having to lay flat on his back, he doesn't have full use of his hands. So yes, he's got lots to say.

All signs are good so far. We expect to be in the hospital for a few days, but he may be sitting up as soon as tomorrow. The doctor said that babies are much more resilient than adults and that what will take Thomas a couple days to bounce back from would take an adult weeks. Not to mention that, unlike adults, when a baby feels pain, they stop doing whatever movement causes that pain.

Rebecca's mom came in to town, which is of great benefit. We're working a bit of a rotation so that we can get out a bit and get things done. Thomas' primary nurse and guardian angel from the NICU, Tina came by this evening to make sure Thomas is on the right track and being properly looked after.

Thomas has fallen asleep, so I think that's my cue to sign off. I'm a little tired myself, so I might try to rest before the next nurse intervention. Every 3 hours all night. Woo hoo...

11am Update - The Consultation Room

Exactly an hour later and the nurse walks up and I was expecting her to hand me the phone again, but she said that it was time to go the consultation room to meet with the doctor. So we quickly gathered up all of our electronics and various bags, as we are loathe to travel lightly anywhere. We rushed into the consultation room and waited for the Doctor. He said everything went well. One large incision, 2 small pieces of bone (one at the base of the spine and one where the cyst is). The doctor found the cyst to be odd, but not threatening upon examination. He couldn't remove it because it was too close to the spine and has sent a sample to be tested in the lab. So hopefully that will be ok. He said when he cut the fat at the base, the spine sprang up a little, which was a good indication to him.

We're back in the waiting room, waiting (ironic). We were fortunate to get our original seat back (the music is still playing from the video game. There's no way to turn it off). Thomas is getting moved to recovery and then later today he'll be admitted to the hospital.

more to come

10am update

We're still in the waiting room. They give us an hourly update from the O.R., which I just got. A nurse actually calls us from inside. Basically all is well. They are still operating. Couple things that we weren't aware of before this morning. They have to remove some bone from the spine to get at it. In the future, it may need to be fused, but he didn't think so and that Thomas should be able to play sports. There is a possibility that the spine could become tethered again, so we'll have to watch out for that. I'll give you another update when there is something to say.

Things that I hate

I hate that surgery has to be so early in the morning that I have to wake Thomas up.
I hate that he is so trusting and happy that he doesn't fight getting into his car seat and doesn't get anxious by the familiar smells and florescents of the hospital. (My dog Charlie freaks out about any building with a linoleum floor because it means the vet, a bath or boarding, maybe one day Thomas will too).
I hate the look of shock and confusion on Thomas' face when
I'm holding him and someone sticks him with a needle to draw blood.
I hate all of the possibilities that the doctor has to disclose that could go wrong right before he takes Thomas away.

I hate the waiting room.
I hate this waiting room with a broken tv.
I really hate the Nintendo Mario Kart game that keeps playing the same song over and over and over.
I hate these chairs.
I don't hate the food in the cafeteria, but I'm not calling

I hate that we have to put our lives on hold again.

I hate that we're so used to this routine that sometimes the magnitude of the situation is lost on me.
I love you Thomas. I love you Rebecca.

Monday, March 1, 2010

Et Tu Brute?

I still owe and plan to make good on the surgery clean up from a couple weeks ago. There is much to be said about that. But in less than 12 hours, Thomas goes under the knife again, and hopefully for the last time for the foreseeable future. This one makes us all a little nervous, especially Rebecca (she's a mom, so she says its ok).

I think I've mentioned that Thomas has a tethered spinal cord (if not, I just did and we'll move on). A tethered spinal cord is not as bad as it might seem I guess. Basically babies' spinal cords are not fully developed. At the end of the cord are a bunch of nerve endings floating free in a sack of fluid. That sack of fluid can sometimes adhere itself to something else down there. As it happens, this is fairly common with Preemies (I swear, we really should have gotten one of them regular babies). If nothing is done about it, as a baby grows, the spinal cord gets stretched and, needless to say, nothing good comes of it. So the thing to do is go in and untether it.

This procedure is obviously dealing with the spinal cord, so a neurosurgeon performs it. Now the good thing is, as far as procedures a neurosurgeon performs, this is a relatively minor procedure. There is a cyst on the cord that he wants to check out, but all in all, we should expect about 4 hours in the OR, where they will stab him in the back (hence the clever title). From there he/we will spend 2 to 3 days in the hospital recovering. Then he should be completely back to normal. I know Rebecca would appreciate any prayers and well wishes that you can throw Thomas' way tonight and tomorrow. I will update things tomorrow, and maybe get caught up on other blog items.