Tuesday, November 29, 2011

Cameron is a superstar!!

For the past 2 days, every time we have given Cameron a bottle she has taken the whole thing! Something just clicked for her. She took 5 of the last 8 feedings completely through the bottle and the 3 that she didn't take they didn't even try, they were just giving her time to rest. So, starting this morning at 11:00 she is getting all of her feeds by bottle! That means if she goes 24 hours without the nurses having to use her feeding tube it will be taken out!!!! So the earliest it could be taken out is tomorrow morning :D But as usual that is all up to miss Cameron. If she decides she wants to be a little diva and quit halfway through even one feed and they have to put the rest through her tube, the 24 hours starts over. I am over the moon!! I thought it would take way longer to get to this point but it looks like the NG tube will come out this week, and even as early as tomorrow woohoooo! I realized today I have yet to get a picture of her bottle feeding so I will take one the next chance I get and post it! And then once her NG tube comes out she becomes eligible for the open air crib. Woah. My 2 lb preemie is becoming such a big girl.

Once her feeding tube comes out the doctors are thinking her desats might clear up a little bit. The tube is constantly keeping the muscle that closes her stomach open and that allows some food to come back up which can cause the desats. Once the tube is out her stomach will stay closed and help stop them. That's the hope anyways. The other issues is still the lasix. They put her back to every other day lasix so we will see how she holds up with that.

I can't believe there is such a short list of things to happen before she comes home. Taking all feeds by bottle, open air crib, no more desats, and no more lasix. And it looks like we are about to cross a couple of those off. Maybe her homecoming is closer than we think...

Saturday, November 26, 2011

We're still here

Sorry I haven't updated in a while it's just that nothing really had happened until today. We're definitely focused on getting Cameron to take all her bottles. Sometimes she is very interested and gulps them down in 10 minutes and sometimes she won't even take half. It's hit or miss. She is mostly ready to go home except for the bottle feeding.

Pretty much the only other thing she needs to do is come off the lasix. Not sure when that is going to happen, she was supposed to come off Monday or Tuesday but it doesn't look like that is going to happen since she gained 6 ounces last night. In case you were wondering, that's way too much. They like her to gain about an ounce per day. She went from 3 lb 12 oz to 4 lb 2 oz. Anything over 1-2 ounces is usually water weight which means she's retaining a ton of fluid. So instead of trying to take her off the medication they started her on daily lasix instead of every other day. UGH. But hey, at least she hit the 4 pound mark... She also hadn't pooped in a while so they thought that could be contributing to the weight gain. They weighed her after she had a large bowel movement and she was down an ounce to 4 lb 1 oz.

Another kind of exciting thing is she had her 2 month shots this week! She is such a big girl! I thought they would do those when she was 2 months adjusted but they actually do it with her actual age. She clearly didn't feel well for a couple of days but that's to be expected. She started having some more oxygen desaturations which her doctor says is how the preemies show that they are not feeling well after their vaccinations. She is back to normal today though and doing really well. She still has some desats but is much better. That's really the only other thing that needs to happen before she goes home, she has to stop desatting but they say the babies always grow out of it.

So anyways, with the new lasix issue plus the bottle feeding it's going to be a couple more weeks. The neonatologists all say that the babies usually go home around 37 weeks corrected. She is 35 right now so that would give us 2 weeks and I doubt that's going to happen. Her doctor said it's possible she could surprise us and make it happen though but now looking doubtful. 38 weeks corrected may even be too soon, he's now pretty much hoping for 39. So we'll see. It's gotta be sometime in December or I'm gonna lose my mind. Her doctor still is confident it will be before Christmas which is mostly what I care about.

Snuggling with mommy!

Such a sweet baby :)
Exhausted after a bottle "too much milk!!"

Tuesday, November 22, 2011

First bottles :)

Cameron had her first bottles today! She got used to the bolus feeds and stopped spitting up after eating so she was ready to start bottle feeding :D The first one this morning she took down like a champ, finished the whole thing pretty quickly. The second one she still did really well with but only got about two thirds down, the rest they put down her feeding tube. The nurses are so impressed with how she is doing for her very first bottles, it can take a while for things to click for preemies. They don't have the natural suck-swallow-breathe pattern down the way a normal newborn does so for them it's a learning process. For now it will stay at two bottles per day. Also, they stopped her caffeine today and plan on stopping her lasix I think sometime this week, and that's really it for her meds. She's off all her breathing support and she's ready for the open air crib (they still won't actually do it for a while since the isolette isn't hurting anything).  The only thing we have left to conquer is getting her to take all her feedings by the bottle :D

And of course she's still growing like crazy, now weighing in at 3 lbs 10.8 oz!!! It's so surreal that she is getting close to 4 lbs. The 4 pound range is when a lot of the babies come home. Things are just FLYING now and I've already said this a million times but I can't believe how big she is getting! She truly looks like a normal newborn which is amazing. Things are really wrapping up. Her doctor is betting on 3 more weeks in the NICU. So that's actually pretty close... her homecoming is creeping up on us, I guess I really need to seriously get everything ready for her at home sooner rather than later!

Saturday, November 19, 2011

No more cannula!

I'm so excited, Cameron got her cannula out Friday night!! For the first time in her life she is breathing completely by herself and she's doing awesome! I'm so proud of her. The only tube she has left to get rid of her is feeding tube which, FYI, has been moved to her nose. In some of the pictures I am posting you will be able to see it. It may look uncomfortable but the babies actually like it in their nose much better than their mouth. When it is through their mouth it stimulates their gag reflex and makes it harder for them to close their mouth. Now that the cannula is out she can have it in her nose so they made the switch. The put her back on the bolus feeds Thursday (smaller amounts) and she did well both Thursday and Friday. Today she is back on the full bolus feeds and she did throw up a little bit after her first one so I'll just have to wait and see how she does.

And she had her eye exam Wednesday where they look and see how her retina is developing. They are monitoring for retinopathy of prematurity (ROP) which is extremely common in early preemies.  A normal newborn has fully developed retinae but obviously early preemies don't and sometimes they don't continue to properly develop outside the womb. While Cameron's are still not finished developing they have continued to develop the right way since birth. The ophthalmologist will keep checking her to make sure they continue on the right path until her eyes are fully mature.

More pictures. Some are from a couple of days ago and some are from today without the cannula. She's looking so much like Josh. Every day the nurses comment on how much she looks like Dad. And she's so BIG!! I can't believe how much she has grown. She is 3 pounds 7 ounces, almost 3 and a half!

Thursday, November 17, 2011

World Prematurity Day

Today is World Prematurity Day. The whole month of November is Prematurity Awareness Month, something the March of Dimes is really involved with. March of Dimes encourages bloggers to talk about their story through their blog on World Prematurity Day in order to spread awareness.

Before this pregnancy I never even considered the idea of having a preemie. I knew it could happen and you always seem to hear about it but it's one of those "it won't happen to me" things. Well it happened to me. Before having Cameron I had no idea how many babies are born preterm, how early they can survive, and why babies are born early. I knew absolutely nothing about it.

As far as how common it is, the numbers are shocking. About 12% of babies in the United States are born preterm. That's 1 out of 8. Most of the time these are late preterm births (34-36 weeks). I'm definitely in the minority delivering at 26.

There's a million reasons why babies are born early. Unfortunately, no one knows why most of them happen or how to stop any of it. There's pre-eclampsia, HELLP, placental abruption, IUGR, PPROM, infection, IC, and the list goes on. That's way more pregnancy complications than I care to know about. My issue was IC or incompetent cervix. Basically there was nothing wrong with the pregnancy at all. Cameron was perfect, I was healthy, it was just the simple fact that my cervix isn't strong enough to hold a baby in. IC usually presents itself as the baby starts to get heavier in the mid to late 2nd trimester. Many people lose their first pregnancy from IC at around 18-22 weeks before they even know they have IC. We were extremely fortunate to find it before the imminent early labor and to carry to a viable point. Sadly, this isn't a one time thing, it will more than likely happen in any other pregnancy. There are things they can do to try and prevent it (cerclage) but the results vary.

I'm completely amazed at how early a baby can survive. Cameron was more than three months early, I wasn't even two thirds of the way through my pregnancy when I delivered. I was still in my second trimester. It just sounds so crazy to me. And the even crazier thing is that babies can survive weeks earlier than she was born. It makes you wonder if one day women won't even need to get pregnant, if everyone's babies will be conceived in a lab and grow in an incubator for 9 months. But we are blessed. Cameron has done amazingly well for a 26 weeker. We've had small issues here and there but nothing compared to the magnitude of problems that some 26 weekers experience.

Our story is nowhere near finished. We aren't even out of the NICU yet. One thing I do know is it doesn't end there. We will deal with the effects of prematurity for a long time to come. Cameron will be monitored by the state of Ohio's Help Me Grow program for developmental delays. If there are delays present she will be seen by therapists to help her catch up. She has officially been diagnosed with respiratory distress syndrome which will have lasting effects for years whether it be in the form of asthma or hospitalizations for what would be a simple cold in a normal baby. There will be ophthalmologist appointments to monitor for retinopathy of prematurity, possible surgery if her PDA doesn't close, we will be quarantined for the first winters unable to see much of our family, synagis vaccinations to prevent RSV, feeding problems etc. Most of these things normal people are completely unfamiliar with but they have become common topics around here. I guess I always thought people have premature babies and then once they hit 8 pounds they are just fine. I really didn't know there would be lasting effects. Luckily in our day, most of the effects are fairly manageable but still things that parents don't want to have to worry about. We will take it as it comes and deal with it the best we can, after all Cameron may very well be our only child.

For more information visit March of Dimes.

Wednesday, November 16, 2011

A little setback

Cameron went to her bolus feedings yesterday and as long as she did well with it she was supposed to start bottle feeding tomorrow. Well, she didn't do so hot. She kept throwing up after every feed. Her belly is just not ready for that much food at one time. They are giving her the day off and starting up again tomorrow but in shorter increments with less food to hopefully make it easier on her. If she does fine with that then they will put her back on the full bolus feeds on Saturday. And then just like before, she has to tolerate that for a couple days before the bottle. So at the very earliest, we are looking at bottle feeds starting Monday but everything has to go perfectly until then so I guess I'm just not that optimistic. I know she will eventually get there and this is normal preemie behavior but it's such a huge disappointment for me. I'm really down about it, I feel like this one little setback just added another week onto her NICU stay. This is exactly what I was worried would happen so I'm desperate for things to go well tomorrow.

Everything else with Cameron is still going really well though. The nurse took her off the cannula today to give her a break and she did just fine! It was nice to see her face without it. We also had a successful breast feeding session on Monday which was exciting. It is going to be a learning process for both of us but she was very interested and gave it a really good try!

There's a brand new 27 weeker in the bed next to Cameron (born on Monday). He is going through all the same awful stuff that Cam went through in the beginning. It brings back a lot of painful memories and feelings watching him but it also forces me to look at how far we've come. My heart aches for his mother as I remember how hard that time was. Sometimes you get so caught up in the problems of today that you convince yourself you'll never get to the next stage. I used to look at all the babies that were like Cameron is now and think that we'd never get there. Now we're there and I feel like we'll never get to the coming home stage. I know we will but it's so hard. I wish I had a fast forward button.

So I guess I just really need to concentrate on the big picture. She is doing so well overall and in the grand scheme of things this is probably really not a big deal. As my mom always says (quoting Scarlett O'Hara), after all tomorrow is another day.

Monday, November 14, 2011


There are so many weird things about very early preemies that I would have never even thought about. When Cam was born she had no cartilage in her ears. It was so funny, all she had was the flaps of skin. Looking at them you wouldn't be able to tell because the skin was in the shape of an ear but you could completely flatten them with your fingers. Anyways, I was holding her today and noticed her ears sticking out a little more so I touched them and lo and behold, she has cartilage now! They told me it would form after about 32 weeks but I hadn't checked in a while. In a way it's actually pretty amazing to be able to see your baby developing outside the womb!

In other news, there is definitely a lot going on in the near future. They are still weaning the air flow in her cannula and they are hoping to get rid of it completely by next week! SO exciting! Also, if you remember from wayyy back when I talked about her being on caffeine, they are hoping to get rid of that too by next week. Now that she's almost 34 weeks corrected they expect her to start acting more like a big girl and do most everything on her own. She needs to regulate her own heart rate and breathing instead of getting help from the caffeine and she needs to be able to breathe without the cannula.

As far her feedings go, tomorrow is the official day they are starting bolus feeds. They will give her Tuesday and Wednesday to make sure she is tolerating it well and then start her bottle feeds on Thursday. So we have an official plan finally instead of just "soon". We tried to "breast feed" on Saturday and she was not interested at all. We couldn't get her to wake up enough to even realize what was going on so I'm not surprised. I don't know why I even bothered, I guess I was just really eager for the first attempt. Her doctor wants me to start trying every day when she is very alert. She has SUCH a strong urge to suck when she's awake so I'm sure she will take to it. She will stay awake as long as you give her the pacifier. She treats it like a bottle, she doesn't just suck but she sucks and swallows as if she's eating. The nurses think she is definitely ready to bottle feed but we just have to make sure her belly can handle such large amounts at a time first.

And because I can't get enough of her in her cute little outfits, more pictures :)
Baby burrito

Friday, November 11, 2011

7 weeks

Cameron will be 7 weeks old tomorrow I can't believe how old she is getting!

The only real news I have is that they want to try her at breast feeding over the weekend. Not to feed her, she may get some milk obviously but it's mostly so that she can start practicing. Her real feeds will continue through her tube. They want to see how she responds, if she latches and all that stuff. I don't know why but I'm kind of nervous. I guess I just don't want to be disappointed if she doesn't respond well to it. I am excited though, she's becoming more and more of a real baby!

She still has her nasal cannula. They tried to start weaning her Monday and she didn't like it so they stopped. She did so well though over the next couple of days that they are trying it again today. She's not getting any oxygen from it, just air flow. All they are doing is weaning how strong the flow is. I really think this time she will do fine.

Mostly though things are still remaining pretty much the same. I feel like we have been talking about bottle feeding forever but it will happen. They want her to be close to 1500 grams (about 3 lb 5 oz) before they start her on the bolus feeds (where they give her larger quantities at one time instead of a continuous drip). Then after that she will go to the bottle. She is 3 lb 2 oz today so we're getting close. Her doctor did promise though that he would have her bottle feeding by Thursday at the latest.

And if you can believe it, she is still getting cuter! Here are some new pictures:

Wednesday, November 9, 2011

Another picture comparison

Nothing new to report. Still doing really well and just working on growing :) She isn't quite ready for her first bottle but it should happen in less than a week!

The day she was born
6 weeks 2 days old (3 lb)
That's Josh's hand in both pictures. I can NOT believe how big she is!!!

Tuesday, November 8, 2011

We've got a 3 pounder!!

Woohooo! Cameron weighed in at 3 lb 0.7 oz today :D

Everything else is still about the same. Still on the nasal cannula and having her normal oxygen issues. Even so her doctor is actually starting to wean her off the cannula. She had a chest x-ray this morning and her lungs are now completely clear of fluid. The doc said everything looks beautiful compared to her first x-ray. As always he is so happy with her progress and doesn't care about the oxygen issues. It actually is much better than it used to be and he feels it is something she will grow out of as her lungs mature.

I have a feeling things will remain pretty stagnant until they start bottle feeding her in a week or so. There's not a whole lot left to do with her and she is just working on growing and growing! I literally can't believe how big she is compared to how she looked at birth. It's unreal.

That's it for this evening, yay for Cameron hitting 3 pounds!!!

Saturday, November 5, 2011

One of the big girls

Things are starting to happen really fast now. They told me this would happen, things would go slow for a while and then all of a sudden it would take off. She is almost three pounds and is now regulating her own body temperature. That is one of the things I knew needed to happen before she went home but I just didn't realize it was coming this soon. Here is how it works: She wears a temperature probe that is hooked up to her isolette. They "set" her body temperature to 36.5 C and the isolette would adjust its' own temperature to keep hers close to 36.5. So if her temp drops a little bit the isolette raises its temperature and vice versa. Well, now they just set her isolette to a certain temperature and she has to maintain her body temp herself. It is kept a little bit warmer so she doesn't have to work as hard since she still doesn't quite have the body fat she needs. After this, the only thing left is the open air crib!

This also means that she is big enough to start wearing clothes! And now when we hold her, they can take her out and swaddle her up instead of kangarooing. Plus we can get her out every time we're there, not just every other day or once a day or whatever, but every time. If one of us is there, she is out of her isolette :D The babies can't really wear clothes or be swaddled until they are big and mature enough to regulate their body temperature themselves. It feels good to be able to treat her like a normal baby. She is really becoming one of the "old" babies. They are talking about moving her to what's called the "developmental room". This is a room for babies who are bigger and no longer need lots of support. They are basically just there to grow and feed until discharge.

The shirt is still a tad big :)

I don't want to imply that other moms take their babies health for granted because I know the most important thing to a mom is her child's health. But I don't think you can truly know the value of just being able to hold your baby whenever you want until you have either been through a situation like this or been close to someone who has. It's definitely not a good feeling to have to just sit and stare at your baby.

Cameron's NICU stay is getting down to the wire and there are only a few milestones we have left to reach before she comes home. Getting rid of her nasal cannula, getting out into the open air crib, and bottle feeding. That's it. It's so crazy because I never thought we would get to this point. Don't get me wrong, working with her on bottle feeding can take a while and it's probably the biggest hurdle but I am SO glad to be done with that "critical" stage of the NICU. When the doctors do their rounds in the morning, they start with the most critical babies. Cameron was first for a long time but now she is pretty much last. I watch her doctor round on all his other babies first and then come over to Cameron and I love it! I hated being the smallest and sickest baby there, not that anybody likes it, but it was the worst feeling. I always looked at the moms holding their swaddled and clothed babies with envy. So being at this point feels really, really, REALLY good!!!

Friday, November 4, 2011

6 week recap

Cameron will be 6 weeks old tomorrow. It is so hard to believe she's that old and that much closer to coming home. We could potentially be halfway. I thought I would take a look back at all the big milestones she has met.

She was not breathing at birth and put on the ventilator. After only 48 hours and a dose of surfactant she was taken off the ventilator and put on the CPAP. About a week later she was tried on the nasal cannula and didn't do well. That bought her the BiPap. She was taken off the BiPap last week and put back on the CPAP. Tuesday she was taken off the CPAP and is doing so well on the nasal cannula!! She is now on room air most of the time. Cannula is the last stop so it will be a big milestone when she finishes with it. Overall, this area gets most improved. Her issues have really cleared up, no more scary episodes.

For the first 4 days she was only getting IV nutrition. The fact that she would need long term IV nutrition got her the PICC line. On her 5th day she was started on VERY tiny amounts of breast milk through a tube feed. They increased her feeds every 2-3 days until she was taking enough by mouth that they could stop the IV nutrition. She had her PICC line taken out about a week ago!! She is doing really well on full feeds. Still on the feeding tube, our next goal is to go to bolus feeds. This is where she no longer gets a continuous drip but large amounts at one time as if she was bottle feeding. They will start that maybe in about a week and once she proves she can tolerate it she will start on the bottle, hopefully at 34 weeks corrected.

Her weight gain has been fairly slow but we're definitely getting somewhere. Born at 2 lb 2 oz, she dropped down to 1 lb 11 oz on her 4th day of life. She got back up to 2 lbs on October 1st. It took her a while to get to two and half pounds, she hit 2 lb 8 oz on October 26th. Today, she is up to about 2 lb 13 oz! Getting dangerously close to three pounds :D

Our biggest issue. The lasix is helping to control the fluid retention. A recent echocardiogram shows the PDA is smaller than it used to be.

She has not run into any infection issues which is amazing.
Also, she avoided a blood transfusion. A course of epogen was enough for her to produce enough of her own red blood cells.
She is now able to kangaroo with us once, maybe twice, per day. When she started it was once every other day.
She only had one stint on the bilirubin lights. I was expecting her to be on them multiple times throughout her NICU stay but she is doing just fine without them.
Her head ultrasounds have all looked good, no problems there which is a relief.

I think that's about it. The day to day progress can feel so slow sometimes, but when you look at how far we've come, how many milestones we've passed, and how many issues have cleared up it's truly amazing. She has exceeded so many expectations and I'm so proud!

Tuesday, November 1, 2011

She's a free bird

with her new nasal cannula! She looks SO much more comfy and she is tolerating it so well. Even on the nasal cannula she isn't needing any oxygen, go Cameron!! She is slowly shedding all her cords and uncomfortable equipment :) Now if only we could get that feeding tube out but it's gonna be a while for that one...
and after!
In other news, they did a repeat echocardiogram today and her PDA is getting smaller!!  Still definitely there but smaller is good so I'm happy. And no weight yet, they're not doing it until later tonight but her doctor assured me today that he's fine with her weight and he really thinks she will be home before Christmas if she keeps progressing this way. Of course he reminded me that "setbacks do happen" but as long as there's nothing major we should get to take her a couple weeks before her due date (12/29). That's good to hear, the doctors rarely say those kinds of things to me because they don't want to be the bad guy if it doesn't work out that way. At least he is confident enough now to tell me that. How exciting! Now that it's November I can say we're taking her home next month!!