Milestones

Noah continues to amaze us more and more every day.

I am back at work now, and it is a struggle to leave him those four days a week, even knowing what wonderful care he has when I'm not there. Even harder is not being there for every new amazing thing he does. Darren called today while I was covering study hall to tell me that Noah rolled over, all by himself, for the first time today. Darren said he was doing tummy time and just got so sick of it that he decided to roll over on to his back. I was absolutely ecstatic, and after sharing the news with my study hall students, I called my mom to let her know. It wasn't until I had had a few minutes to sit there and let it sink in, that the sadness crept in - he will only roll over for the first time once, and I didn't get to see it. It was so spur of the moment that Darren didn't get to video tape it either. Obviously every milestone he reaches is something to celebrate, regardless of whether or not I am there to see it. But I still can't help the little tiny bit of bittersweetness I feel.

On a brighter note, it's definitely a sign of more big things to come. The occupational therapist visits every Monday now, and after her session with Noah this week (just her second visit overall), she told me she was confident he would be rolling over by the end of the month. Who knew it would actually be by the end of the week?! Every day he is doing better and better at grabbing for and holding on to objects. He is already starting to try to get them to his mouth :o) And more importantly, he has totally embraced bottle feeding, beyond any of our expectations. He absolutely loves drinking from the bottle, holding on to our hands while eating, whining if we take the bottle away to burp him. He has yet to need a tube feeding during the day this week! The only tube feedings he is getting now are his continuous feed at night. After talking with the speech therapist yesterday during her visit, we have decided to slowly start increasing the size of his bottles during the day, so that we can start decreasing what he gets at night. Eventually, maybe even by Thanksgiving, he won't need the night (and therefore tube) feedings at all. Now that is something to be really thankful for!

I keep trying to come up with the right words to end this post with - to sum up how excited, encouraged, blessed, thankful, etc. we feel, but I don't think any of those words do it justice. I don't know if there are ANY words out there that can adequately explain how we feel. It's amazing. HE is amazing. Our life is amazing :o)

Phew!

Thank goodness this weekend looks to be a lot more pleasant than last weekend. Noah started coming down with a cold last week, mostly just a stuffy nose in the morning that would clear up by noontime. But on Friday, it didn't clear up, and by that evening he had a bad enough cold that we took him in to the pediatrician, just in case. The pediatrician assured us that his lungs sounded fine, and to run the vaporizer in whatever room he was in. Unfortunately, by 10 pm that night, Noah was definitely starting to tighten up in his chest, and I set us up in the bedroom with two vaporizers and the rocking chair. I was prepared to rock him there all night, since he seemed to have a much easier time being held upright. By midnight however, he was laboring pretty hard to breathe and sounded AWFUL, so we called the ambulance to take him to the emergency room. As if that wasn't upsetting enough, when I was in the ambulance with him and we were preparing to leave, I asked to go to CMMC instead of Farmington only to have the paramedic tell me that with the way he sounded, we didn't have the extra time to go to CMMC. Scary!!

They gave him a nebulizer treatment in the ambulance, which seemed to help a little, but not nearly enough. So at the hospital, they decided to admit him. Turned out he had croup, and with his narrow airway, what should have been just a mild case turned out to cause more trouble with him. In the end, it wasn't that bad. He received two more nebulizer treatments and a shot of decadron (a steroid to held reduce the swelling in his vocal chords), and I slept propped up on some pillows on a hospital bed with him in my arms. All in all, despite our originial hesitation about bringing him to Farmington, they treated him, and us, very well. Before the ambulance left, I told Darren to make sure he brought Noah's NICU discharge summary with him, so that the hospital staff would know what they were working with, and they were very pleased that we had. They all commented on how amazing he looks considering everything he went through.

They ended up discharging him around 1 pm on Saturday and sent us home with an oral dose of decadron to give him that evening. And so ended the most current leg of our tour of New England hospitals. We now stand at five ;o) He slept most of the day on Saturday, but by Sunday was starting to act like his old self. He seems to be completely cleared up and feeling good now. PHEW!

Pumpkin Head

Just a couple of recent photos to share, hopefully an update soon!

He Passed!!

Noah passed his swallow study!! HOORAYYYYYYY!!!

On Tuesday, I took Noah down to Maine Med to have his third modified barium swallow test (the first two were while he was still in the NICU). The swallow test was meant to check to see if he would still aspirate during oral feeds. I can not tell you how nervous I was; I just wanted so badly for him to pass so that he could finally know how freaking amazing eating is. (Seriously, eating is third on my list of favorite things to do, only behind cuddling with my family and sleeping.) And obviously, it would just make life so much easier for all of us. No more hauling around his feeding pump and pole, no more button in his belly, no more worrying about infection, etc. So after a little while in the waiting area, we were called in. They put a big led apron on me, and got Noah set up in front of the cameras that would take x-ray video of him (a little scary - how is it that if I need a big led apron to be in the room with him, that he can be plopped right in front of the x-ray machine with just his lap covered? But it had to be done, so what can you do?). I will say, it is very cool to watch x-ray video, and if it weren't for all that radiation, it would be fun to do at a party :o)

Anyway, I was prepared to make sure that Noah had the best possible chance for success. As soon as we were in there, I told the speech therapist who works with Noah that I wanted to start with a slow-flow nipple and thickened liquid, so that he could start out with the easiest settings. After all, we would certainly do the same thing at home with him, if that was the only way he could do it at first. Unfortunately, she explained that they couldn't start with thickened liquid because of the way the barium coats the throat - apparently it would make it difficult to see what was going on when they later tried unthickened liquid. And naturally, all she had with her was a regular flow bottle. But I came prepared, and whipped out the Dr. Brown's slow flow bottle I had brought from home, just in case that happened, and she agreed to use it. So I didn't get my way on the thickened liquid, but I did with the bottle, and I think that was probably more important anyway.

So when it was time to start, they gave me the bottle to try with him, and he just kept gagging over and over. I was so panicked that he was choking on the liquid, and I kept taking the bottle away every time he gagged, but they could see clearly on the video that he wasn't even getting any liquid yet, so he wasn't choking. I think because the liquid was cold, the nipple was too, and he didn't like the feel of it in his mouth, and that was causing the choking. At that point I was really nerved up, and I didn't want to make it stressful for him, so I let the technician that was there take over, while I watched with the speech therapist and the nurse practitioner. Wouldn't you know it, as soon as she took over, he took off!! He did fantastic, and it was so amazing to watching the barium flow down his esophagus, never once leaking into his windpipe. I was so nervous the whole time, wringing my hands and dancing from foot to foot. I didn't need to worry though, because he did it perfectly, and we were given the o.k. to start trying a bottle with him once or twice a day with just 10-20 cc's, to get him used to it. On the 21st, I'll be taking him to the feeding clinic where we will work one on one with speech, p.t., and o.t. to come up with a timeline and goals for him. So exciting!

The next day, Darren and I took him to the pediatrician's. He needed two more vaccines plus the first round of his flu shot. The nurse went really fast, but he still cried and was so upset. But as soon as the nurse finished and I picked him up to rock him, he calmed right down. Sweet little guy :o) And on a brighter note, he weighed 12 lbs 12 oz and was 24 inches long! The doctor was very pleased and said that we were doing a great job with him, and that he was catching up very quickly. So far he is right on target with his developmental milestones too, when you take into account his adjusted age! When he had the button put in and we were finally able to start doing tummy time again, you could tell that he had really regressed with his neck strength and head control, and I was sooo upset. But we have been working on it everyday, and he is back up to where he was when we left the NICU. It's so exciting to see how much he changes, grows, and improves everyday!

Pics

Please bare with me while I post these pictures without any idea as to what I am doing. I still have't really explored blogspot's features, so I am just going to use the easy button, which I think will just post my pictures in a big long line. Good thing he is so cute, because otherwise it wouldn't be very visually appealing!

Finally

So I really have no excuses for not posting after all of this time, other than I just kept telling myself, I'll do it tomorrow. There sure are a lot of tomorrows, huh? :o)

Anyways, Noah is thriving being at home. He and I have made a little routine for ourselves, and I think I can safely say that we are both enjoying ourselves. Don't get me wrong, there are days when I get a little stir crazy - we can't take Noah into the public because of his weakened lungs, which means we are confined to the house except for visits to the doctors and grandparents. And since I try to avoid having the tv on when Noah is awake, that can make some very long days for me! But overall, I love being here with him, watching him change every day, and I am dreading going back to work.

He is up to 11 lbs. 13 oz., and he is 23 inches long. This Wednesday he will be 6 months old. It seems like yesterday and at the same time, years ago, that he was born, weighing just 1 lb. 14 oz. and only 12.5 inches long. He is making gains developmentally all the time. He watches Darren and I as we move around the room, and he looks for us whenever he hears our voices. He is smiling all the time now, especially when he first wakes up in the morning. I cannot express what a joy it is to roll over in the morning to say hi to him for the first time that day and see him grin at me from ear to ear, almost as if to say, "Yay, you guys are still here, that's so awesome!!" He has some favorite toys that he also smiles at, and he coos at both us and them. He tries to reach for his toys, and sometimes if he is really into it, he will roll over on to his side to try to get closer to them. And now that he has his tube out and his button in (we had it switched on the 1st) we can do tummy time again and cuddle up with him against our chest. We are loving it!

That's not to say everything is easy, because it definitely isn't. Our first weekend home with him was very rough for me. Darren was working at EMS (his fun part time job) from 9 to 5 on Saturday, our Noah's first full day home. If we had found out earlier that Noah would be coming home when he did, Darren would have found someone to take his shift. But since we had so little notice of Noah's homecoming, and the fact that it was a long weekend, so Darren would still get to have two days off with him, he kept the shift. Well Friday night, when we were getting ready for bed, Darren noticed the tiniest spot of seepage on Noah's onesie where his tube was. That was something we were told to expect, so even though I got a little anxious when he first noticed it, I went to sleep thinking everything was fine. So the next morning Darren got up and left for work while Noah and I cuddled in bed (he doesn't actually sleep in our bed, he sleeps next to it in a co-sleeper, but sometimes in the morning we will bring him in with us just to enjoy some snuggle time). Everything was peachy keen until I went to change Noah's diaper, and noticed that the area around Noah's tube looked very different (in my eyes) than it had the day before. In fact, I was absolutely certain that one of the sutures had pulled loose and that Noah's guts were coming out. I called my mother in a panic to come over, and while she was on her way, I called our home health nursing agency. Since it was a Saturday, I left a message with their answering service and waited to hear back. Keep in mind, Noah appeared perfectly happy, with no discomfort whatsoever, but I was absolutely certain that the stuff I was seeing around his tube had to be his guts. My mother arrived quickly, and she took his temperature for me (twice just in case!) while I listened to the home health nurse return my call only to say that I should contact my pediatrician, who by the way, had yet to meet Noah and therefore knew nothing about him. At this point I was crying and close to hysterics, only holding it together while on the phone. My mother used her cell phone to call my Aunt Bern (who works in a doctors's office and helped take care of her husband's feeding tube) to come over and look at his belly for him, while I called my pediatrician's office to leave a message with their answering service. While waiting, I cried some more, wrung my hands a lot, and tried not to hyperventilate too much. I called Darren at work and made him call Pat, one of our favorite NICU nurses, to ask her to call me back on my mom's phone. I called the pediatrician again, since they still hadn't returned my call, and after being put on hold, was told to call the NICU. WTF!!!! Why were we given all of these contacts outside of the hospital if none of them were going to help me?! So I called the NICU, and they at least were friendly and helpful. After reassuring me that it almost certainly wasn't his guts coming out, they paged Dr. Halter, the surgeon who put Noah's tube in, to call me. And all at once, my help came. Aunt Bern arrived to take one look at the tube and declare it fine, Pat called back to listen to my description and provide reassurance, and Dr. Halter called to explain that the tube had been secured with about five billion sutures, and from what I was describing, he was pretty sure no guts were spilling out. So, after calling Darren to tell him I may have overreacted a little, I got Noah's feed started, put him down to nap, and promptly fell asleep while my mom picked up around the house and unpacked more of the kitchen and bathroom. Later on that weekend, while Darren and I were carefully washing around the tube as instructed, the material previously assumed to be Noah's guts fell off. It was a big old scab. Thus ended the great Homecoming Tube Scare.

And lest we think it would be free sailing from there, we of course had to have a mishap with the button during our first night home. The tube that connects his button to the feeding pump's tube actually has two ports on one end. One port connects to the feeding pump's tube, the other can be used to put medicines through with a syringe. When we put Noah to bed that night, I must not have closed the medicine port all the way after giving him his iron, because it popped open fairly early on in the night. Unfortunately, we didn't realize it until we woke up in the morning when I rolled over to change Noah's diaper and found him soaking wet and cold up to his waist, having slept in a puddle of formula the whole night. I felt soooooooo guilty. And of course, the evening before, I had been reading a piece on infant dehydration in Parenting magazine, and I was certain that having missed his entire night feed, Noah was in danger of becoming seriously dehydrated. So after another panicked call to the pediatrician (I think they are going to begin thinking I am crazy if I keep this up), we were told to just increase his day feeds to catch him up and that he would be just fine. And so it's official - I am a full-fledged hypochondriac. ;o)

Next up, Noah turns 6 months on Wednesday, and Darren will be the big 3 - 0 on Friday.

Go Sox!

Home Sweet Home!!

We are home at last!
The surgery last Monday went very smoothly, and Noah began recovering immediately. In fact, he recovered so well that when I called Darren from school Tuesday afternoon (I had gone in for freshmen orientation that day), he asked when I had last talked to the NICU. When I told him earlier that morning, he said, "Well I just talked to them, and they said they think Noah can go home on Friday." Folks, excuse the awful image this may form in your head, but I was so excited I nearly pooped my pants! We had thought after talking to the surgeon pre-op, that we were looking at today as the most likely day for Noah to come home. So to hear that we would be able to come home in just three days, I was pretty much walking on air.

So late Wednesday morning, they moved Noah in to the isolation room in the NICU, along with a cot for me so that I could room in with him until he was discharged and take over taking care of him. It was so amazing, like our own little place. I kept telling Noah he was going to have a sleepover with mommy :o) It was such a relief to know that the nurses were right outside my door if anything went wrong. I didn't sleep much that first night. Noah was taken off all of his monitors, and everytime he made a sound, I jumped right up to make sure he was ok. The second night was much easier on both of us, as he slept 6 straight hours! I was crossing my fingers that he would do the same when we brought him home.

In the meantime, Darren and I started spreading the good news, including to our two favorite nurses, who wouldn't be returning to work until after Noah would be gone. They were both disappointed they wouldn't be there to see us leave but so excited for Noah, Darren, and I. In fact, one of them even stopped in on her day off to hold him one last time and take pictures. We all exchanged information so that we can stay in touch, and they will definitely be at the top of the invitation list for his first birthday!

This is going to get cut short, as Noah is waking up and demanding some attention, but I'll post again soon about actually bringing him home and our first week together! In the meantime, enjoy this picture of him in his special coming home outfit!

Fingers Crossed

It has been way too long since my last post here. It seems like so much has happened, and yet now that I am writing, I can't think of anything to say.

I guess the most important thing to mention is that Noah will be having his g tube inserted tomorrow - the last step on the road home. I was able to sit down with his surgeon on Friday and ask lots of my questions. I have to say that as nervous as I am for Noah to have surgery, I feel great about his surgeon. He has amazing bed side manners, and one of Noah's nurse's did a little digging on him and found that he has great credentials. I really feel good about him, so that makes this a little easier (but only a little, God knows I am still worried sick).

Amazingly enough, his surgeon believes that as long as there are no setbacks, Noah will be able to come home sometime next week! It is so unreal to finally hear someone give us a date to go home! And it will mean that I will have a whole month home with him before I go back to work.

On a sidenote, Noah is getting to be the most adorable little butterball I have ever seen. He is up to 9 lbs 8 oz and 21 1/2 inches long now! Not bad for a 24 week'er weighing 1 lb 14 oz!

Happy Birthday!

Happy Birthday to Noah! He is four months old today (123 days to be exact, I somehow messed up the count in one of my earlier posts). It is almost impossible to believe. Our big goal now is to make sure that we are celebrating his 5 month birthday at home!

When I went in today, he had pulled out his feeding tube, so I was able to see his face entirely clear of tubes - what a treat! I took pictures, which I will try to post as soon as Darren uploads them for me ;o)

Noah also had his swallow study this morning. He is still aspirating on plain milk, and unfortunately, he also aspirated a little on the thickened stuff too today. So for now they will take a break on bottle feeding, as his airway is the most important thing to protect. When we have our team meeting on Tuesday, we will discuss what the best feeding options are for him to get him home as soon as possible.

Anna and Tom are both coming up this afternoon. We'll be going to dinner at Darren's favorite place, the Texas Roadhouse (I'm sorry you can't be there with us honey!), and of course visiting my little guy. Tom will be going to my parents place tonight, but Anna will spend the night here with me. And tomorrow she and I will go to the new apartment and set up Noah's room. I will definitely have to post pictures of that. Soooo exciting, I can't wait!

Click on Through

So I don't know how many of you are addicted to reading certain blogs, but I know I am. And during my daily reading, I came across a reminder. Rather than simply reading my favorite blogs through google reader like I normally do, I will actually click over to their site, and therefore get tracked as a visitor, allowing the blog author to make some extra money from their advertisers. (Man, I need to get me some advertisers!) It doesn't really take any time, and by mentioning the idea on your own blog, you are entered to win some awesome baby/kid gear. So that is what I am doing ;o) Click the button below for more information!