Kaitlyn Ryan

After almost seven weeks, we are officially parents! I have had many people ask me how parenthood is, but it never fully hit me. We were visiting a baby at the hospital everyday, but leaving her there and going home to sleep. Now Kaitlyn is with us all the time and we love it!  She was sent home on a monitor to watch her heart rate and breathing since she is still on caffeine. She is also still on oxygen during her feedings. Both of these will be reevaluated in two weeks.

The first night was wonderful, yes, even with the middle of the night feedings. We had our first pediatrician appointment at 10:20 Wednesday morning and we actually got out of the house on time. We were certainly impressed with ourselves. The rest of day was spent feeding her, changing her, and watching her sleep and it was great. Kaitlyn also received her first bath (at home) from Mima that evening. She seemed to enjoy it, check out the pictures.

Now we are just taking one day at a time and trying to find our own routine. Thank you all again for the prayers and support. We wouldn’t be where we are today without all of you!

On Tuesday, around 1pm, our baby girl was discharged from the hospital, was put in to our car, and brought home.

That’s right – Kaitlyn is home!

Things are going great. And contrary to popular opinion, we are much more rested now than we have been. Getting up a couple of times a night is hard, but having your child in the hospital is much, much harder.

Anyway, we will update as we can. Thanks for all the prayers over the last seven weeks. They brought our baby home!

-Dad

So here we are, having just found out that boobs could end up sending us home. Needless to say, we were exited. But how could this work? They were going to have to ensure she would take a bottle before she left, right? I mean, they couldn’t expect Tori to be there at every feeding, and I don’t believe any of our regular nurses were lactating, so that was out.

But see, she can be there every feeding, if we were to room in! So the plan is breastfeed for a few days, then room in for two days to ensure she wouldn’t lose weight, and then we could go home. Shouldn’t be more than 5-6 days.

Needless to say, we were elated. So the first thing we do come feeding time is put her to breast. And she goes to town, with virtually no events. Home, here we come! Except for one small problem:

She wasn’t getting any milk out.

You see, they have these fancy scales that are super accurate. And one cc of milk weights one gram. So you weight her before breast, and then after, and the difference in her weight is about how much she took. Well, the first time, after 20 minutes of great sucking, she went up zero. The amounts varied over the next day from anywhere between zero and eight. Not exactly the breakthrough we were looking for. And as we thought more about it, we realized that we couldn’t go home without a little bottle experience. What if something happened to our supply, and we had to start using formula, and thus the bottle?

So we talk to the doctor, and she explains that we will be introducing the bottle before we left, and that we needed to continue to work on it while at home. We just didn’t need it to go home. Which makes a bit more sense to us. So after a bit more discussion, we agree to start working on the bottle. One bottle a day, after she had been at the breast for a few minutes first. Sounds good to us.

As it turns out, it sounded great to Kaitlyn.

You see, she went from one bottle a day, to two, to three, and then, wouldn’t you know it, the light went on.

That’s right, my beloved friends and family. She is taking all of her feeds by bottle. No events. No problems. She has been at it since Friday morning, and she has been kicking butt. Her weight has been fluctuating a bit, but it should level out very soon. So what does this mean, you ask?

It means they have pulled the tube going up her nose and into her stomach. It means that she was finally able to do (and pass) the upright test, where she spends an hour and a half in her car seat. It means that the last hurdle has been crossed.

It means that she is finally able to come home!

When is the happy day? It is still a bit unclear as to the exact date, but we are expecting sometime this week. Some of the nurses think it could be as early as Tuesday, though I think later in the week is probably a bit more realistic. But we are close, the light at the end of the tunnel is near. And we cannot be more excited.

Of course, the nursery is still a disaster, we have baby stuff everywhere, and the house is a general disaster, but that’s ok. Because our little girl is going to be home with us, and that is all that matters.

Updates will be coming a lot faster now that there is actually some action. And check out the photo gallery for some pictures of her without anything running into or out of her body for the first time in her life.

-Dad

So when we last left our darling baby girl, she was about to have a swallow test performed on her to ensure that she is not breathing in her feeds. This was two weeks ago. Unfortunately for all involved, the test was a relative disaster. The machine couldn’t record the session, Kaitlyn wasn’t hungry, and they only got four good swallows out of her before they decided to call it quits. During those four swallows there was some “penetration” of liquid into her lungs, but no aspiration, so the folks running the test say it isn’t a swallow problem. Case closed, right?

WRONG!

Here is the crazy thing. Occupational therapists (OT) are called in when a baby is having problems feeding from a bottle. They observe, they try feeding, and if they feel it is necessary, they ask for a swallow test to be done. Seems simple enough, right? Of course, the crazy part that the OTs do not actually run or participate in the test.

Say what?!?

No, the people involved in running the test are speech pathologists. So OT sends her to the swallow test saying the suck and latch are great, but swallowing might be a problem. Speech then does an abbreviated test, and tells OT that swallow is fine, but her suck seemed weak and her latch was bad. And thus did we become privy to the Great Turf War. So OT gets the results back, and the first thing they do is say Speech is wrong, and that we need to do another swallow test to prove them wrong.

Meanwhile, bottle feeding attempts have come to a stop, and we are in the midst of switching attendings, so we have a new doctor basically every day for a week. So during that time, this is how things went: We are doing swallow test, we are not doing the swallow test. We are going to move forward with the bottle, we are not going to move forward with the bottle. It was the best of times, it was the worst of times.

Once the back and forth of it all had just about made us seasick, our permanent attending for the month finally comes on board. And the first thing she asks is:

“Have you been putting her to breast?”

Well, of course not! We figured a ban on bottle feeding meant a ban on all oral feedings. Not so, says the doctor. And not only that, but some babies will have significantly fewer problems on the boob. So why don’t we give that a try. And wouldn’t you know it, she was right! Bradys decrease, suck/swallow/breathe coordination increases. Now, she isn’t getting as much as we would like (8cc) but we are relieved that we are finally moving forward. And then we find out that, according to our doctor, we can go home on breast alone. No bottle necessary.

What you talkin’ ’bout Willis?

And that is where Part One ends. I’ll give you all tonight to read this part, but tune in tomorrow (or even later tonight) for the exciting conclusion!

Our new family wishes everyone a very Happy Thanksgiving. We are grateful for the amazing support we have had over the past six weeks. Without our friends and family, we could not have made it where we are today. Our little girl is a miracle, and we are thankful every day that we have this beautiful and amazing baby girl in our lives.

In this age of pipes, tubes, and the Intarweb, is not keeping up with a blog about your daughter considered bad parenting?  I hope not, because otherwise I am off to a pretty bad start!

So I know that all of you are anxious for an update about the little one.  Well, all of you are going to have to wait a bit longer.  As I have been thinking about writing for the last couple of weeks, it occurred to me that you know nothing about how Tori and I are doing, and how the room is coming together.  So this post is about us.  Kaitlyn’s post will follow sometime tomorrow.

Tori is doing great.  She is 100% recovered from the surgery, and is finally able to drive some.  That’s nice, because I was getting a bit tired of our personal rendition of Drivin’ Miss Daisy.  More importantly, though, is that she is kicking ass in the “production” department.  For those of you who don’t know what I am talking about, you obviously weren’t paying attention is 6th grade health.

The room is coming along nicely.  We had some issues with the floor.  Basically, our foundation has a crack running down it, and it happens to go straight through Kaitlyn’s room.  So KB Home was nice enough to send some folks out and get that sealed up for us.  The painting is done, and the custom closet system is up.  We are having some issues with the window treatments, as the window frame is not exactly square.  And we still have to get the chair rail up at some point.  But we have a bit of time, as Kaitlyn will be spending the first few months in our room, not hers.  I think we will get it done before she comes home, but it is nice to know we have that bit of a buffer if we need it.

As for me, well, I am steady.  Wife, child, work, home, hospital – it definitely adds up, and honestly it was nice to take a bit of a break from these posts.  Not that I don’t enjoy your company.  It’s just that I needed some “me time.”  And based on what I have written here, I am definitely a bit rusty.  But don’t worry, the next post will be all that you could ever want…from a blog post.

-Dad

So it turns out that the lack of bottle feeding progress is a bit more of a big deal than I first suspected. Certainly no large flags have been put up, but babies approaching 36 weeks usually can take from a bottle just fine. In fact, as I mentioned earlier, most babies are working on going home by 36 weeks because they are rocking out on their feeds.

So where are we with our dear Kaitlyn? Well, we had an occupational therapist come by today and check out the sucking and seal she is putting on the bottle, and she said it looks great. So now they are going to do a Barium swallow test to see what is going on when she swallows her meal. This might not only reveal why we are lagging behind in the bottle feeding, but also explain why she has more Bradys than the show did whenever she feeds orally. If the Barium test shows nothing unusual, then I am not exactly clear what the plan is.

So I am of a mixed opinion on what to hope for here with the test. On the one hand, I don’t want anything to be wrong, because what sort of father would I be if I wished for my child to have a problem. But on the other hand, if she did have some sort of problem, odds are they would have some sort of magical serum to fix the problem, and we would be that much closer to getting home.

And as all of you know, I love researching things, and the tubes of the Intarweb have all the answers. In my quest to show the doctors how awesome I am, I came across a fairly interesting paper that talked about preemies who have difficulties feeding by mouth, and who also happen to experience bradys during those feedings.

Sounds like I just found a dog, and his name is BINGO!

Needless to say, I have downloaded the paper, and plan to show it to the doctors if the Barium test comes back negative. Basically, it is a slightly different feeding technique than the one we are using now. To put it as simply as possible, the technique puts learning to feed by mouth in the hands of the infant, not the doctors. Which will be an interesting proposal to float forward because it is how the doctors have approached everything else to this point: let her dictate to them when she is ready to make a step forward. Yet with the bottle feedings, it is much more forced and scheduled.

So keep your fingers crossed, your hopes up, and your prayers coming. And with all of that behind her, we might just make it home by Thanksgiving after all.

-Dad

PS – I know some of our doctors and nurses check this website occasionally. First, please don’t take the post as a slight to any of you. You all have been awesomely fantastically wicked great, and her successes can be traced directly to your knowledge and expertise. Second, if you are intrigued about the paper I found, here are the details. I would post it, but I don’t look kindly on getting sued.

McCain, Gail C., Ellen O. Fuller, and Peter S. Gartside. “Heart Rate Variability and Feeding Bradycardia in Healthy Preterm Infants During Transition From Gavage to Oral Feeding.” Newborn and Infant Nursing Reviews, Vol 5, No 3, pp 124-132. September 2005.

This post will be a recap of what has happened this weekend.

Shower
We had an excellent time at the Charleston shower, and want to thank everyone who came and spent some of their Saturday afternoon with us.  All of the gifts rock, and we are looking forward to when Kaitlyn comes home so we can start using them!  I am keeping this brief in hopes of motivating Tori to post about it.

Kaitlyn
Our baby girl is doing very well.  She is growing very quickly.  As of today, she is 3lbs 3oz and 17 inches long.  For those who need help remembering this is half a pound and nearly 3 inches longer than when she was born.  It is hard to see since we see her every day, but looking back over the pictures yesterday, it is amazing to see how much she has changed.  Even over the last couple of days, she has gone from looking very thin to looking like a “normal” baby.  It is really quite neat.

Also, now that she has reached this weight, she is starting to wear clothes.  You can check out the pictures from yesterday to see what she looks like with a jumper on.  And yes, that is the smallest outfit they have at MUSC, so you can tell she is still pretty tiny.  It also means that she is maybe a couple of days away from moving out of her isolet and into an open crib.  I think that will be a big step for us in terms of viewing her less like a preemie and more like a normal baby.

So where are we in terms of getting home?  I am glad you asked.  It looks like she is probably holding her temperature pretty well on her own.  The nest is running at room temperature, and she is doing a good job of keeping her temperature up, so I think we are pretty close to meeting that goal.

However, she still bradys now and again, even on caffeine. We are hoping that as she gets closer to 36 weeks, the bradys will go away on their own.

To further complicate things, the bradys seem to happen almost exclusively around feeding time.  She is also really struggling to feed from a bottle, which is another big requirement for coming home.  She hasn’t been able to take one full feed yet, much less eight.

Three weeks ago, worrying about something as simple as eating from a bottle would have seemed silly.  She has made such great progress.  I think we have gotten used to her moving forward so quickly with everything they want her to do.  Now we have something which is not happening quickly – something we actively participate in – and so we are getting frustrated with ourselves.

So we are going to ask the nurses to start doing the bottle feeds instead of us, at least for the next few days.  That way, there isn’t inexperience on both sides of the bottle.  Hopefully once she gets it figured out, we can start doing it ourselves again. And then soon after that, she will be home.

I never thought I would say anything like this about my child:  pray that she sucks.

-Dad

Well, she is putting on weight like crazy now. On Wednesday, she was 2lbs 12oz. Yesterday she was 2 14. And then today she is now 3lbs.

Of course, she is still having problems eating from the bottle. Which is one of the major requirements for getting home. But I am confident we will get there.

Also, we got a quick summary of the head ultrasound. Everything looks great. No new bleeds. We will get more details today (I think), but that is great news.

On related topics, the room is coming together nicely. We still have a few more things to do, but the painting is done, which was probably going to be the most time consuming. Everything else should be pretty easy.

Also, we are looking forward to all of the showers we are having. Tori’s work is throwing her one today, the Charleston Shower is tomorrow, and my work is throwing us one next Saturday.

And by that point, we should have everything we need. Which is a good thing, because by that point, Kaitlyn should be a few days from coming home.

-Dad

PS – Sorry updates have been a bit thin lately. Tori and I have been crashing pretty hard when we get home. Plus she can go several days without anything dramatic happening (which is a good thing). I would imagine that as we get closer to coming home, we will have more to say.