Happy Due-Date!

If Dylan had been a more conventional child- with a bit more patience, today would have been his due date. It's really amazing to think of how far he has come in these last 10 weeks. To think that if things had gone according to schedule, I would only just now be changing my first diaper, burping him for the first time, feeding him for the first time- all these things that have already become like second nature would still be brand new to me. It kind of makes him coming so early feel like we got a head start on things with him. Granted, I would have rather had him cook for the full duration and avoided 48 days in the NICU, but now that he's home and doing so well, I think we can look at the bright side of his early arrival. Heck, it's not like we can do anything about it now, anyway.

And he does have a bit of a head start, I guess. He is already learning to support his head. He doesn't have full control over it yet, but when on his belly, he can pick it up, hold it steady or move it from side to side. He can hold it steady when he is upright as well, but not indefinitely. That will come as he gets older. His hand eye coordination is becoming somewhat noticeable. While he can't actually grasp things at will, he can definitely bring his hands to his mouth whenever he wants to, and he even seems to intentionally hold his pacifier in his mouth at times. He can track moving objects well, too. As long as it moves slowly, and stays within his range of focus, he will follow something by moving just his eyes and when it moves far enough, he'll turn his head to follow as well. He also reacts to sounds and voices by turning towards them to investigate. All of these things are things that a full term baby would be learning over the first one to three months. Dylan, who is just now at "day 0", already has these things down pat.

You only need to take one look at this before and after pic to see just how far he has come!


To celebrate his due date, Barbara and I finally finished decorating Dylan's nursery, It hasn't been a real priority, since he has been staying in our room, but since it was a special day, we thought we would add the finishing touches. I've created a slide show for those who are interested in seeing how the nursery looks.



Anyway, that's all for now... I'll check back in on Sunday.

The Honeymoon Is Over

All along, I have been waxing poetic about how wonderfully adjusted Dylan is to being home. I've mentioned how he just doesn't get cranky, how he sleeps soundly and how he is simply the best behaved baby to ever grace this planet.

Yeah... not so much, anymore.

It seems that Dylan may have hit a bit of a growth spurt. Instead of taking his usual 4oz every 4 hours or so, he has graduated to 4oz every 2-3 hours. And when he isn't eating, he is pooping. if he isn't eating or pooping, he is trying to decide which of those two he is going to do. I can hear all the snickers from all of the folks who are parents... yes, we were warned.

But geez... this little guy is giving us a run for our money. I'm writing this after having gotten exactly 1 hour of sleep last night. Yeah, I thought it would be the nice thing to try and let Barbara get some sleep, so I volunteered to take the late feeding and the early one- thinking all along that I could get about 4 hours of sleep in between, and then go right back to bed afterwards for some more. Dylan had different plans though. From around 2am or so, until around 6am, he was either eating, pooping or fussing. He even managed to sleep a bit in my arms. Of course, if I tried to put him in his bassinette, he was wide awake and crying less than a minute later.

But... I survived the night. A lack of sleep isn't something new to me, but it's no fun either.

I'll let you all know how things go in my next post, Wednesday.

Until then...

Familiar Faces, Unfamiliar Places

Tuesday was a big day for Dylan.

His follow up RoP exam was scheduled for 11 am in Gainseville. It seems that the doctor that he was referred to is either the most popular pediatric ophthalmologist in the world, or she is woefully understaffed. His 11am appointment had us finally seeing the doctor by around 1 pm or so. After what seemed like a 5 minute exam, we were on our way. Through the entire wait, which I was dreading, Dylan was the perfect example of calm and serenity. He just sat in his carrier, looking around him and making noises at Barbara. Even after they took us in and put drops in his eyes to dilate his pupils, he was his usual happy self.

As far as the exam itself, Dylan passed with flying colors. RoP stands for Retinopathy of Prematurity. When babies are born early, the development of the blood vessels in their eyes can grow abnormally. This can lead to decreased vision or even blindness if not caught early enough. Thankfully though, Dylan had no signs of RoP during his first screening, and as of this last screening, his retinas are fully developed. So, no worries there. The doctor recommended a yearly follow up to monitor him for other possible preemie concerns like crossed eyes, lazy eyes or nearsightedness.

After the eye exam, we went to pay a visit with a few of the folks from Dylan's care team at the NICU. Dr. Baines, his doctor from June who did such a great job of taking care of Dylan and keeping us informed, his occupational therapist Elayne and his social worker Juda were all thrilled to see Dylan again. Dylan seemed to remember them as well. He started out a little cranky for Dr. Baines. but after he got a little food in him courtesy of Elayne, he was a much more pleasant visitor.

After our visit in Gainesville, we got a bite to eat at one of the local restaurants that we frequent and Dylan drew rave reviews there. Apparently it's very easy for anyone to see just how amazingly cute this little guy is. All of the waitresses who saw him couldn't help but comment on how cute he was, even when all he was doing was sleeping. But then, I knew that already :)

What surprised me the most was that even with all of the running around and being outside his normal element for the majority of the day, Dylan was only ever cranky if he was hungry. He really seemed to like the car ride, as I guess most babies do, but even when we were not in the car, he found things to amuse himself or he slept soundly. Hopefully this is just a sign of things to come.

Anyway, that's all for now. Sorry this is so late- so late that it is not even Wednesday anymore. Dylan wanted to eat right at the same time I sat down to type this, and he wasn't about to wait. When it comes to his belly, Dylan has no patience at all. I'll have another update on Sunday.

Hello again!

When I last posted, I had mentioned that I was returning to work on Thursday. Well, it wasn’t easy. After spending 7 weeks being able to only see him for a few hours a day, to then having 24 hour access, to then going back to work and not being able to see him… It’s just another adjustment. I’m glad though, that I was able to take as much time off as I was both through the entire NICU ordeal and for the week after he finally came home. Now, I’ve just got to get caught up at work.

As for Dylan, he just keeps on growing. We measured his length for the first time since he came home, and he is 20” long. His last measurement in the NICU was 19”. He was 16 ½ when he was born. I don’t have an accurate weight, but he is plumping up nicely. He now has a cute double chin, rolls on his legs and he is developing rolls on his arms too.

He is also awake much more often these last few days. Previously, he would eat and then go right to sleep for about 3 or 4 hours, wake up and then eat and go right back to sleep. There were brief periods of wakefulness in between eating and sleeping, but they generally wouldn’t last much longer than 30 minutes or so. That is all changing, and it’s a joy to see. Now, Dylan will typically wake up either due to a dirty diaper or to a hungry tummy. We’ll address whatever the issue was (or both) and then have about and hour or more to spend some time with him. If he’s awake but relaxed, in what is called the “quiet alert” stage, I love to take that time to read to him. He’ll curl up on my chest and hang on my every word. If he’s more active then we’ll play little games with him or spend some time doing his exercises to improve his muscle tone. They are definitely working, too. He can support the weight of his head when held upright, for a brief period of time and if he is on his belly he can lift his head and turn it from side to side whenever he wants.

Dylan is also eating like a full term baby. We had originally brought him home using the same nipples that he was used to from the NICU. Not long after we got him home though, we noticed he was collapsing the nipples. His suck was becoming stronger than the nipple could tolerate. So, we tried poking extra holes in them. We had ordered a case of 240 of these things, and we were hoping to actually get some use out of them. The holes helped, but it really became too much of hassle to have to do that each time. They are disposable nipples and not designed for multiple uses, so we would have to poke the extra holes every time. We still had the bottles and nipples that gave him trouble in the NICU, but they are very different from what he had grown used to that we thought it best to try something else. The NICU nipples are smaller and made of rubber. The AVent nipples that we tried are significantly larger and are made of silicone. Apparently, the silicone is more difficult to latch on to. Combine that with the larger size, and it’s no wonder Dylan had a difficult time with them. What we decided to do was to find silicone nipples that were as close as possible to the rubber ones he had been using. After trying a few different brands, we found something that is an exact match in size and shape but made of silicone. Evenflo Comfi’ nipples are a perfect match for the other ones, just silicone. He took to these new nipples very well and has already graduated from a slow flow nipple to a medium flow nipple. One great side affect of Dylan being more comfortable with his eating is that he is taking in far less air, and is far less gassy. He was really having some difficulty with gas for the first few days when he began collapsing the other nipple. Now, that problem seems to have been mostly corrected.

On another subject entirely, it has been brought to my attention that we haven’t added any new pictures of Dylan since his homecoming. I guess since I get to see him so much, I didn’t really feel the need to be taking quite so many pictures. I promise to get some new ones posted soon. For now, please enjoy this one quick snapshot that we fired off yesterday.

Gettin' Snippy With It

Welcome back to Dylan's Den, and thanks for reading! Before I get into the meat of this post, let me remind you about the subscription function that I added to the bottom of the blog page. It does appear to be working, as far as I can tell from the tests I've tried. If you want to receive an emailed version of the blog whenever I post an update, just scroll to the very bottom of the page, enter your email address into the box at the bottom and click subscribe. Or, you could just keep checking back here each Wednesday and Sunday.

Anyway... What's new with Dylan? Well, if you didn't notice the entry in the weight chart to the right, Dylan's weight it up to 7 lbs, 8 oz as of yesterday's visit to the doctor. He's eating very well, to say the least. Of course, his mom is producing copious amounts of milk for the little guy- to the tune of around 50 oz each day, so he's going to keep eating well for quite a while. From what I understand, the average woman produces somewhere around 25-30 oz per day. I guess Barbara was made to be a mom. Some may question his weight gain, thinking it's quite a large amount to gain in such a short time. His doctors have assured us that there is no cause for concern. Babies in the womb gain large amounts of weight during the last few weeks of gestation, which is actually where Dylan is supposed to be right now. Today would mark his 38th week of gestation, so he's right on track.

Speaking of his doctor, we paid a visit there yesterday morning to have him circumcised. He's been handling it very well- far better than I imagine I could ever handle it, that's for sure. He hasn't really shown any affects from the procedure at all, except maybe a bit of minor fussiness. Of course, fussiness for Dylan means that he cries two or three times when you change his diaper instead of only once. There's been no bleeding to speak of, and overall, he seems to have handled it like a champ.

His diaper rash is just about gone as well. At our first visit to his doctor, we were recommended to try a diaper cream named Triple Paste, and it has worked wonders. In the 5 days since that appointment, his bottom has gone from looking like raw hamburger to being as cute as ... well, as cute as a baby's bottom. That stuff is quite impressive. I guess for $20 for a 16 oz tub, it better be. Still, even if it is a bit pricey, I'd recommend it without a second thought.

Oh... To whoever bought Dylan the outfit that says "Automatic Sprinkler"... you hit the nail right on the head! Normally, when I change a diaper, I cover his "sprinkler" with a paper towel. Since that area is a bit tender though, I haven't been doing that. I don't want to touch the area until I'm putting the Vaseline covered gauze back over it. Instead, I am regularly being sprinkled on. So is the floor. So is the changing table, the rug we had in front of the changing table, and on one occasion- the wall as well. This guy can certainly build up some pressure. For his first diaper change after we got him home, he sprinkled Barbara and I both... THREE TIMES! In one diaper change, he soaked us down three times. It must have been his way of telling us what he thought about the whole circumcision thing.

Well... that's all the interesting info I can think of at the moment. Tomorrow I finally go back to working my full schedule again. Something tells me I'm going to miss the little guy...

I'll let you know how it goes in my next entry on Sunday.

Transitions

Today was our first full day together at home. Much to my surprise, Dylan is adapting spectacularly well to his new surroundings. I had expected some issues with him being away from the familiar lights and sounds of the NICU, but he has proven to adapt to his surroundings very quickly.

He is sleeping well, whether we have the TV on in the room, lights on, or total darkness and silence. He is eating about every 3 hours or so, sometimes 4 if his last meal was large. He is also a pooping machine. I never in my life thought something that small could produce that much poop. He's pooping so much actually, that he has quite the case of diaper rash. It's getting better quickly though, but it sure looks red and painful. Judging by his reaction when we clean him, I would venture a guess that it is painful.

His reactions are sooo encouraging, too. I know every parent wants to brag on their child about how good they are, but Dylan is just awesome in this regard. When he is upset by something- whether it's a dirty diaper, being hungry or his bottom hurting him, he lets out one cry, or if he is really upset, maybe two or three. even if we can't quite drop whatever it is that we are doing at the time and it takes a minute or two to get to him, he still only cries that one time. It's almost as if he knows, "I cried. They heard me. They'll be here soon." Of course, this is just the beginning, so who knows how long this "honeymoon" may last, but I am surely going to enjoy it while I can.

He had his first appointment with his pediatrician today. She seems OK. I wouldn't rave about her from the little bit we gleaned in our one visit, but she'll at least serve her purpose for now. I think we'll likely end up searching and interviewing some other docs before we find the one we are most comfortable with. There's nothing wrong with the doc we saw today though- she just didn't do anything to impress me.

Dyaln got his first round of shots today, and we were prepared for the worst. After hearing stories of how other family members children reacted badly to one or more of the vaccinations, we were expecting Dylan to at least be cranky, to be overly sensitive to stimuli, or even to just cry a lot. Thankfully, there was none of that. He seemed a bit more tired than usual, but that may just be a side effect of the change from the familiarity of the NICU to being home. He never got a fever, never got cranky, and was his normal self. I'm so glad our first full day with him wasn't spent with him feeling miserable.

Even Barbara and I are transitioning well, I think. I'm well aware of the disruption to normalcy that a new baby can bring to any home, but we've always been so far from normal that it might actually make us more normal. Seriously though, we're starting to work out a reasonable schedule of feedings, Barbara pumping, and she and I being able to spend some time together just watching TV, talking and just being a couple. Of course, once we think we have the hang of it, I'll have to go back to work, and we'll have to figure something else out altogether.

All in all, it's been a nice transition for all of us. Dylan certainly seems content in his new home, and I know for sure that Barbara and I are more than content to have him here with us.

P.S.- A quick note about the blog... I am experimenting with a feature that should allow you to subscribe to the blog via email alerts whenever a new post is made. Scroll down to the bottom of the page and enter your email address in it's entirety into the dialog box and click "subscribe". If things are working properly, this will subscribe you to a GoogleGroup which receives an email whenever the blog is updated.

Home at Last!!!

It is with great pleasure that I finally announce that Dylan is home.

After some drama, delay and conferences with docs, therapists and social workers, Dylan was discharged today from Shands and is home with Barb and I.

The majority of the team who were responsible for taking care of Dylan while in the NICU were absolutely fabulous, and although we had some challenges with a few individuals over the course of his last week or so, even those difficulties can be set aside and left in the past. It's the compassionate care of his doctor, nurse practicioner and almost every one of the nurses that helped take care of our little boy that helped make the past 7 weeks survivable for Barbara and I. If you are a member of the Shands team, know that your contributions to our son's care and to our families concerns can not be appreciated enough. Barbara, Dylan and I are forever indebted to you- whether you took care of him for one night or for a month. I know we gave this web address to a number of folks whose genuine concern for our son's well-being truly touched Barbara and I, and I hope you all continue to visit and follow Dylan's progress.

His first pediatricians appointment is tomorrow, which I assume will be a "getting to know you" kind of thing between Dylan, the doc and Barbara and I.

It has been a long 7 weeks, waiting for him to come home, and although it feels like a huge weight has been lifted from my shoulders, I am well aware that the journey is just beginning. Being able to begin that journey in earnest, in our own home... It's just a huge relief.

Unexpected Update

This is an unexpected update- not just because I already updated the blog once today, but because of the reason for the update.

I mentioned the car seat study in my last post, and how Dylan failed his first attempt. The plan was for Barb and I to meet with the nurse practicioner covering the schedule on Monday to go over how to manage a preemie in a car seat and to do his evaluation for a second time then.

Today, when we arrived at the hospital, we noticed something odd on his chart. Normally his vitals are taken two or three times per shift. I noticed his chart today showed that they were taken 5 times over the course of one hour. Each entry looked normal- good sats, good heart rate. So why did they take them so often, I wondered. Well... I flipped the chart over and there was a note: "Passed Car Seat Study Today!!!"

We found out that his practicioner picked up an extra shift this afternoon, and decided to go ahead with the eval since she was there and he seemed to be doing very well.

So... good news for our little guy. He still has the RoP screening tomorrow, but things are looking very good for a Wednesday homecoming for the little one. It still isn't set in stone, but we are hopeful for sure.

Waiting semi-patiently

Dylan continues to grow and learn, and we continue to wait for him to be ready to come home.

He is doing fairly well. He has had no spontaneous episodes of bradycardia or O2 desats. He has had a few desats while feeding, but these can sometimes be attributed to positioning or the fact that he doesn't always pace himself well when eating. Sometimes he gets so interested in the eating part of things that we have to pull back on the bottle for a few seconds and give him time to catch his breath.

We experimented with the bottles that we were planning on using at home with him the other day, but Dylan apparently doesn't like change. When he was using the new bottles, he couldn't quite get a good seal around the nipple and had to work very hard to get anything out of the bottle. This caused him to desat a bit and to brady as well. So... we've put those bottles away and we'll just use the ones that he's gotten used to at the NICU until he's a bit bigger and stronger.

He continues to get physical therapy to strengthen his trunk muscles, and it definately appears to be working. He still has some work ahead of him though, as he needs to be able to hold his head up and keep his lungs expanded for when he get';s into the carseat. He failed his first attempt at the carseat study, having some difficulty keeping his sats up when in the upright seated position. He just needs some time and more work to get those muscles strong enough to support his head to keep his airway open and to help expand his lungs as needed, especially when in a more compressed position like they are when sitting.

Overall, he's moving along at a solid, steady pace. We'd love for him to make huge amounts of progress voernight and be ready to come home tomorrow, but that's not very realistic, so we'll just keep working with him as he allows us to and take things as they come.

I'll probably be going to updating the blog on Wednesdays and Sundays from now on. It's just been too difficult to try and do it at night after our visits, so I figured posting twice a week in the morning would be a great way to keep anyone interested up to date. Of course if there are any major developments, we'll post sooner, but for now, count on the Wed/Sun updates.

Closer and closer

Dylan continues to get closer to coming home.

My conversation with his doctor on Monday went very well. She feels that he is very close to coming home, and if he can go a week without any desat spells or bradycardia, he will be on his way. He actually has a new doctor and nurse practicioner, as the old team have rotated out at the beginning of the month, and they are following the same plan. We've been told that the doctor is "very conservative" though, so hopefully that won't stand in his way of coming home.

He has an exam scheduled for Monday to screen for Retinopathy of Prematurity, a potential problem with the growth of blood vessels in the eyes of preemies. This is one of the hurdles he has to clear before heading home.

Also, he needs to pass a "car seat test" where he will have to spend an hour in his car seat without experiencing any desats. Sometimes preemies, especially those with low upper body muscle tone, will have issues keeping their lungs inflated well enough when is the semi-upright position that they have to sit in while in a car seat. This test will ensure that he will be safe for the ride home.

He continues to feed well, and still exclusively from a bottle. There are a few tricks to getting him to feed at times, as it is still not natural for him to be eating at all. It's hard to remember that he still should be inside his mom, cooking and that he is still learning to do the simple things that you might take for granted from a full term baby. But, even if it does take a bit of work sometimes, Dylan does a great job of feeding and it is reflected in his growth.

As of last night, he weighed 5 lbs 14.9 oz.

His feed schedule has been changed to allow for what they call "ad lib, on demand" feeding. Essentially, this is a change from being fed every 3 hours in that it allows for the nurses to take better advantage of his alert states and feed him when he is ready. Sometimes, he would be scheduled for a feeding at 9pm, but would be wide awake at 8pm. When 9pm came along, the window had been missed and he was sound asleep. That won't be an issue now. He basically get's to eat any time from 2 hours since his last feeding, up to 4 hours from his last feeding, whenever he is most awake, and he eats as much as he wants, with a goal of at least 50cc. As long as he continues to gain weight, feeding shouldn't be a hurdle he faces before heading home.

All in all, he is making good progress. He is just starting another 7 day waiting period though, to go without the bradycardia. Apparently, the nurse that was watching over him for the last two nights observed a brady, and that has reset him for a week. It's tough to be patient when he's so close to coming home, but we're doing our best.