Kaitlyn Ryan

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!

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.

Our beautiful baby girl is doing a fantastic job. We started feeding her from a bottle once a day and she doing a great job. It has been a challenge since bottle feeding is new for all of us, and feeding a preemie is a little more complicated, but Kaitlyn has really taken to the whole bottle feeding experience. Yesterday she took 18.5 cc out of 25 cc! We’re moving right along. And since she is drinking all of this yummy milk, she is gaining weight too (she’s up to 2lbs 14.2oz) which means she’s doing what she needs to do to come home.

Sean got a little ahead of himself with his caffeine post. He assumed Kaitlyn was going to go on caffeine since she was having Brady’s, but the Doctors hadn’t prescribed it yet which is why his decaffeinated post came along. Well now Kaitlyn is officially on caffeine.

Sean and I have started taking the nights off from the hospital. This was a challenge in itself. We spend at least eight hours a day by our baby girl’s side, but it still doesn’t seem like enough. We are using this time to finish getting Kaitlyn’s room ready for her homecoming. Needless to say the nursery got interrupted with her surprise arrival, but we’re moving forward again. It is coming together very nicely. We will post pictures when we’re done.

I am hoping that these last couple of weeks will go by fast so we can finally have our sweet baby girl home. These past three weeks have been an emotional roller coaster and I could not have made it without the loving support of my wonderful husband. Sean has really been my rock through this whole experience. Through the good days and the bad, the tears and the smiles, he helps me get through being a preemie parent. Kaitlyn and I are very lucky!

Ok, so she never actually went on caffeine. The doctors have decided that her bradys aren’t serious enough to go on caffeine.  Even more, according to our nurse today, unless a brady lasts for 5 seconds or more, they really aren’t considered “bradys.”  At least not the type of bradys you might find in preemie websites or books.

The big news from today is that she should be putting on 15-30 grams of weight a day. She isn’t quite there yet (gained 30, lost 5).  I suppose the average for the last couple of days isn’t that far off of that, but he wants to see a consistent 15-30 a day.

I have really been badgering Tori to post more on this website.  Maybe if she hears how much you guys want to hear from her and not boring old dad all the time, it will motivate her to post more.  So if you want to hear from Tori, comment on this post.  I’ll make sure she notices.

-Dad

So our little Kaitlyn has been having bradys. And while I am talking about a lovely lady, she doesn’t have three very lovely girls, and is not married to a man who is bringing up three boys of his own.

A brady is basically when her heart beat slows down below acceptable levels. A baby’s heart beats about twice as fast as an adult, so anything under 80 bpm is considered a brady. Bradys usually accompany apnea, which is when a preemie forgets to breathe, and desat, which is when her oxygen level drops. They refer to them as As, Bs, and Ds. Usually, As are the primary thing that happen, and Bs and Ds follow (if you stop breathing, your heart slows and you aren’t taking in as much oxygen).

As, Bs, and Ds are very common among preemies, becoming progressively more common the earlier the preemie was born compared to its due date. Why? Because preemies are not supposed to be breathing yet. That part of the brain isn’t fully developed, as it was supposed to have a few more weeks to get there. So preemies that have apnea need a bit of a reminder to breathe. This usually clears up on its own by week 36 (she is currently week 34).

Now, Kaitlyn only seems to have bradys, and she almost always “self stimulates” herself back to a normal speed. Her breathing can get slow, but no alarms go off, and she never really desats. I think the doctors are a bit confused why she only bradys, and doesn’t really apnea. However, because she is doing it, they are going to give her some medicine that will kick her nervous system into high gear to make sure her body remembers to do all the things it needs to do.

That medicine is caffeine.

That’s right. The thing most people use to get themselves going in the morning is the same stuff doctors use to help preemies avoid As, Bs, and Ds. Sounds like they will be putting her on it starting today, and keep her on it for a couple of weeks. Interesting that one of the things Tori tried so hard to avoid during her pregnancy is now the thing she needs to most.

-Dad

So today, I fed her and I changed her diaper. Does that mean that I can officially call myself a dad? I still am not comfortable turning her over, basically messing with her at all, but as long as she is already on her back, I am set! Tori fed her yesterday from the bottle and she took 6cc’s. When I fed her, she took 7. This makes it obvious to me that she likes her daddy more than her mommy.

Tori got to kangaroo her some today, which is always nice to experience. We have decided that her eyes, though incredibly dark, have a blue tint to them. I have heard that all term babies come out with blue eyes, plus both Tori and I are blue eye folk, so I would expect Kaitlyn to go that way at some point. Though I really do like how dark they are now. Very pretty.

The best news today is that she was getting her last dose of antibiotics today. This is good for two reasons: 1. she isn’t sick anymore, and 2. she gets to take her IV out. This will be the first time since she was born that she doesn’t have any tubes going into her. Well, that isn’t technically true, since she still has a tube going in her nose, down her throat to her stomach. But does that really count? Probably, but we are still excited. Unfortunately, we probably won’t see that last tube come out until she is ready to go home. But that will be fine too, since she will be coming home!

Finally, we got semi-confirmation today that she should be home in less than three weeks, assuming she does what she needs to do. Basically, the doctors and nurses made it sound as if a preemie staying past 36 weeks is an unusual thing. She is 33 and 6 days now, and will be 34 on Saturday. So worst case scenario is the last day of her 36th week, also known as November 16. Which, when you think about it, is right around the corner!

Which means we have a lot of stuff to get done! Which means I have to stop spending time on the tubes here and get to work! Which means you guys have to stop spending time on the tubes and buy us stuff!

Just kidding!

Not really though…you can even shop online. Links to the registries are on the right!

-Dad

PS – When you are buying all this awesome stuff for us, please do not buy any preemie clothes.  In fact, please try to avoid buying us any clothes at all.  This child already has more clothes than Tori and I combined.  Really.  We have actually contemplated giving her our closet.

I was wrong about something. In my defense, there are about four separate MUSC nurseries, so figuring out what each one does can be a bit confusing.

Kaitlyn is still in what would be considered (and is called) a Special Care Nursery, just as she was on the 8th floor. However, the 8th floor version is for preemies who might go critical again. The 5th floor version is for preemies who shouldn’t be going critical again during their stay, and who just need time to grow so they can go home. The other nursery on the 5th floor is where all the term babies hang out.

This discovery pleases me immensely. First, I was concerned about how often the nurses actually deal with preemies, as they tend to need more attention than term babies. As we are still in a preemie nursery, this worry is now moot.

Second, I was concerned about how the actual space would be. We were not terribly thrilled with the 8th floor Special Care nursery, as we were in a room where the nurses could not see her directly. As a result, we felt that Kaitlyn was being forgotten. Probably not actually happening, but that was our perception. This new nursery has one nurse attending to three babies. However, the nurse has a station that basically allows her to directly see all of her babies, and she is either at that station or attending to one of her babies during her entire shift.

Basically, take the best of the NICU (great nurse attentiveness), combine it with the best of 8th floor SCN (quiet and space) and you get the 5th floor SCN. We are very happy to be there.

-Dad

So if I had taken any time to update this site today, by now there would probably be 5 separate posts talking about all the craziness that has happened…literally in the last 12 hours.  As such, you guys are just going to have to deal with one large post.  So make sure your coffee mug is full, because you are going to be here a while.

This morning during rounds we got some great news about Kaitlyn.  First, her direct bili had come down from 3.6 to 3.3.  I honestly don’t know what it should be at, but what I do know is that it had been going up for the last week, which could eventually be a bad thing.  So the fact that it turned around is a very good thing.  Next, the cultures they took to see if she still had her infection were both currently showing as negative.  We won’t have the official results until tomorrow morning, but assuming that they stay negative, then they will be able to take her off of antibiotics by Thursday sometime, which is great news by itself, but is even better when taken with…

They have pulled her off of her lipids and TPN completely.  Both are supplemental dietary things that they give preemies since most cannot take food directly for a while.  This means that as soon as Thursday gets here, they will be able to remove her IV permanently.  Coming full circle, the TPN is also thought to be the primary reason her direct bili is high.  So everything taken together means awesome things.

As I promised, that is just the beginning.  As I mentioned in an earlier post, she had been moved from the NICU to the Special Care Nursery.  At the end of rounds, our doctor informed us that because she is doing so well, she would be a candidate to move to the Level II nursery.  This is where babies who have a normal birth go.  So as soon as we get adjusted to life in the SCN, we have to start thinking about moving again.  It’s great, but I think they should take how the parents are doing in consideration sometimes!

Finally, Tori asked our doctor when she felt Kaitlyn might be able to come home.  The doctor fed us the standard line that the best estimate was her original due date, but that most preemies go home a couple of weeks before that.  But then she said something else…something that left Tori and I a bit stunned.  She said that she has seem some preemies go home at 35 weeks (gestational age, not time).  Now normally that would just be something said in passing to keep our spirits up.  But 1. we didn’t need our spirits kept up, because we have been getting a lot of great news lately, and 2. we have found that when a doctor or nurse hints to us that “sometimes this happens,” it always does.  Maybe this is just me being conspiratorial, but I think she was trying to let us know that we could have as little as two weeks before she comes home.  Holy crap!

So Tori pumps, and we have lunch, and I go off to work.  And today, the doctor recommended another first for our Kaitlyn  – to put her to breast and see how she handles it.  Tori can elaborate on the specifics later, but from what I understand, Kaitlyn sucked, which in this case is a good thing!   Being able to feed from breast or bottle is one of the biggest requirements for coming home.

So I get back from work, and it turns out that there is a surprise for me – I get to hold Kaitlyn.  Not just hold her in my hands for a few moments while they put her back in her nest.  But actually sit down and cradle her the way a new father is supposed to – in shock and awe.  And it was exactly that.  I only got 15 minutes, but they were the most amazing 15 minutes I have experienced.  Just looking down at this perfect little being in your arms…awesome.

Okay, so busy day already, right?  No more surprises, please, since we are leaving the hospital not just for the afternoon, but for the day (taking a well deserved evening for ourselves).  Well, not so fast!  We get a call on our way home from our nurse.  Turns out that possible move to the Level II nursery the doctor mentioned earlier in the day wasn’t for later this week…it was for today.  As our nurse explained it, the NICU is for critical babies.  The Special Care Nursery is for babies who are not critical, but could slide that back that way.  And as Kaitlyn is neither critical any more, nor in any danger to going back that way, she needs to be moved to Level II.

Today has probably been the craziest day we have had since the day she was born.   Not only is our preemie doing well, but she is doing so well they are going to put her with the “normal” babies.  And to think it was less than two weeks ago when we were scared out of our minds, with a baby who had to come out of her mother early because the baby was in danger of dying.  And then she lost so much blood that first night, we didn’t think she would make it to morning.

And now, here we are, our baby in the place with all the term babies, breathing on her own, healthy as a horse, and just trying to get fat enough to come home.

-Dad

So after going up by 10grams on Friday and then another 10g on Saturday, she lost 20g on Sunday. We also expect her weight to hold steady today, even though her feeds have increased to about as high as they are going to go for a while. Why is she having “problems” putting on weight? One simple word…

Poop

That’s right. Our little angel is pooping up a storm. Now, we aren’t talking about a lot of little poops. That wouldn’t be that bad. What we are talking about are poops of biblical proportions. She literally flooded a brand new diaper Tori was putting on last night. Granted, as a preemie, her diapers are pretty small, so I suppose it is a bit deceiving. But still, it was probably one of the most surreal things either one of us have experienced in our entire lives.

Ah, the joys of parenthood.

Of course, we are very excited about this development. Not because we like poop. But because Kaitlyn’s direct bili is high and has been going up for the past week. Nothing dangerous (yet), but certainly disconcerting. Pooping is probably the best thing she can do to get it down.

So poop away, my little princess. We promise we won’t show anyone the pictures. Well, maybe your future boyfriends, but that’s it.

-Dad