She is my daughter after all!

Ever since Cameron was born everybody would talk about how much she looks like Josh. And she definitely does, I was just bummed because I couldn't see any of myself in her. So on Christmas my mom gave me some baby pictures because I didn't have any and wow! We do look a lot alike!!

Me at probably 3 months old (sorry about the flash in the photo, I had to take a picture of a picture)

Cameron at 3 months old (except she's more like a newborn but whatever)

It's Christmas Eve and Cameron...

will be out on Santa's sleigh tonight! Don't forget to look for her :)

Oh and I should add it's her 3 month birthday, my 2 pound preemie is getting so big!!

Home update

I haven't checked in in a while and Cameron has been home for a whole week! It's so crazy, this week has flown by. We are so busy but we are really loving it. It is still surreal to me that when I wake up she is right there next to me.

Overall our transition to home was very easy, Cameron has been doing so well. We still have a little bit of feeding issues, that's where her prematurity really shows. Preemies frequently have much more trouble eating than term babies. She is eating as much as she needs to be and is gaining weight appropriately it's just a little bit frustrating for Josh and I. But she will get it. We've been playing around with whether to breast feed or continue bottle feeding with the added formula for calories. It seems to me like the formula is upsetting her stomach making her not want to eat. When I breast feed or give her a bottle of only breast milk she seems to be much happier. As long as her weight gain doesn't slow down I am going to try to cut out the formula since it doesn't seem to be agreeing with her.

We had her first pediatrician appointment on Friday and a follow up eye appointment downtown at the Cleveland Clinic's main campus on Tuesday. The pediatrician appointment went perfectly. She was really happy with Cameron's weight gain and thought she just looked awesome for a 26 weeker (who still hasn't hit her due date). She had no health concerns about her whatsoever and she is now 5 pounds!! The eye doctor went pretty well too but not as well as I had hoped. The retina in her right eye is now fully developed and looks great. Her left eye is not quite there yet and has also developed stage 1 ROP (retinopathy of prematurity) since the last time he saw her. The eye doctor said this is nothing to be concerned about and wants to see her again in 2 weeks. He expects at that time for the ROP to have resolved and the eye to be fully developed. But until then he wants to monitor her closely to make sure it doesn't get worse.

Our neighbor came over the other day to do some photos of Cameron. I am so excited about how well they turned out so I thought I would share them!! She is becoming such a big girl :)

Finally!

After a long 82 days in the NICU, Cameron is finally home. It feels wonderful. We are loving every second of her being home. It feels very strange that we don't have to part with her tonight. I keep forgetting that she's home and then when she grunts or cries, for a second I'm like what's that noise?! And then I realize, oh yeah, there's a baby here!!

She is such a good baby and a really awesome sleeper (knock on wood). Sometimes we have to wake her up to eat, she'll sleep through the whole bottle but drinks it like a champ! She is quite the star feeder compared to how bad her start was.

Her alarm is a little annoying but I like the peace of mind. It is as loud as a fire alarm and every once in a while it will alarm saying her leads are loose. When that happens she's always wiggling out of the strap that holds the leads on but man is it loud, I guess it's good though because if there were a real alarm for a brady or an apnea we would definitely wake up. It's nice because we were able to keep it off most of the evening since we were holding her but just had to put it on for sleep time.

Penny is a little confused but taking it well. She can't quite understand why she is suddenly getting less attention. She's also very curious how this teeny tiny little person can make so much noise. She's been really good though, she doesn't have much interest in getting near Cameron. The closest she got was about a foot away and she was sniffing furiously but then backed off.

Overall our first night went great! I'm just so happy to have her home. She's keeping us busy but it's great!

Tomorrow

We are taking Cameron home. I have so much to do, I am going to be so busy today and tomorrow!!!! I'm freaking out a little bit! We are actually rooming in with her tonight at the hospital so I don't have much time left at all :) Just wanted to update you real quick! I will update again when she is home!!

She's coming home!!

Probably on Wednesday but possibly Thursday. I can not wait!!!!!!! Between this past Thursday and Friday she just had a moment where everything clicked. She quickly started taking all her feeds by bottle, went out into a regular crib Friday night, and had her feeding tube taken out Saturday. It was such an awesome weekend! She's still going great with her feeds so it looks like she'll be coming home this week.

They are sending her home on caffeine and a heart rate/breathing monitor. She has to wear it whenever she's not being held or watched (i.e. napping or nighttime). She will probably wear it for three months that way when she does come off the caffeine we can be sure she is not having bradys or apneas. I am completely fine with all of that because I will have true peace of mind. I won't be worrying that something is going on that we can't see.

I will update as I know more specifics. I am so happy this time has finally come!!!

Photo dump

I finally got pictures of Cameron bottle feeding and I got some in her Christmas hat. I realize the bottle is just about as big as her head but it doesn't get filled up anywhere near the top. Inside the bottle is my breast milk fortified with formula. Normal breast milk has 20 calories per ounce and hers is fortified with formula to 27 calories per ounce so that she gets all the nutrition her body needs.

No, we are not advertising for Tommee Tippee

She is SO exhausted!

Getting burped!

In her Christmas hat

Trying to put her fingers in her mouth 

Snuggling with daddy :)

37 weeks

That's Cameron's corrected gestational age, or how pregnant I would have been today. It's sad to me that she is not at all acting like a normal term baby. She still has apneas like crazy without the caffeine, she's still way smaller than a term baby, and she still can't bottle feed. If she had been born today she would not be having these issues.

The frustration of trying to get her to take bottles is almost overwhelming at this point. She just turns it on and off. Some days she does really well and some days she takes almost nothing from the bottle. Today has been an okay day but I'm not optimistic, I'm sure she will start doing worse again. I hate the fact that we would be home if she would just drink her bottles.

One good thing is they have successfully taken her off the lasix (or so it seems). Her weight gain has been really good since stopping her lasix (meaning it hasn't been too much). It doesn't look like she'll need to go back on but as we all know that could change at any moment.

I'll post some more pictures in a couple of days, I haven't done that in a while. Even with the little problems she is becoming such a big girl! She is almost 4 and a half pounds and getting close to growing out of her preemie diapers which is kind of exciting. 5 pounds here we come!!

Good news

After Cameron got put back on the caffeine I was kind of upset thinking they would never be able to get her off and it would be forever until I got to take her home. But I talked to her doctors yesterday and they told me that if she was ready to come home they would be fine with sending her home on the caffeine! So I guess it really wasn't a setback at all as far as how long it will take to get her home. They said if they had to they would also send her home on the lasix. I am really fine with taking her home on caffeine but I do hope that they can get her off the lasix first. For some reason I almost would feel more comfortable if she came home on caffeine. I don't think I would be so worried about apneas. Anyways, I am so happy about this. I'm amazed at how well the caffeine works, seeing her do so poorly off of it and then do a complete 180 when they put her back on was amazing. But then technically the only thing that leaves for Cameron to do is to take all her feeds by bottle! Once she does that consistently we will finally get to take her home. Much to my dismay I think that will still take some time. The doctors have always told me that this is usually the last thing the babies have to conquer. She's still doing okay on her feedings. She actually had a really good night and morning where she finished all her bottles so I'm hoping she continues to do better and better. Next week she'll be 37 weeks corrected which is finally full term so they want her to start acting like a normal baby! It's so weird, whenever I got upset about a setback they would always say, "remember she's still very young and she's not supposed to be born yet". So next week they really can't say that anymore. But I'm sure Cameron will not care about being 37 weeks corrected so we'll have to see what she decides!

In other news, March of Dimes posted their list of March for Babies events for next year. The date for Cleveland is Sunday April 29. It's a 4 mile walk that will start downtown. Josh and I are really excited about it and hope to march with Cameron as long as we get the okay from her doctor! We'll be putting together a team and we really hope that everyone in the area who is able to march will join our team and march with us! It is something that is really important to us as March of Dimes potentially may have saved Cameron's life with all the medical advancements they have made through their research. Anyways, it's still far away but we are getting excited!

Some more setbacks

Cameron must have gotten tired out and stopped drinking very well from the bottle so she definitely isn't getting her feeding tube out this week. She just needs more time to learn but it's frustrating because we're at the point where she could come home if she was doing everything right. She is meeting the weight requirement (which is 3 lb 15 oz, she is 4 lb 1.5 oz), she just needs to be feeding from the bottle 100% and get off her medications. With such a short list it sounds like it would be simple but it's not.

As far as her medications go, we took a step backwards. Over the past week she started having more and more apneas which are the cause of the oxygen desaturations. They had stopped her caffeine last Monday and everything kept getting worse so they had to put her back on it. Since they restarted the caffeine her apneas and desaturations have stopped and her breathing seems to be perfect but she has to figure out how how to keep breathing without it. I'm worried that since she is still having apnea episodes this close to the end that something is going to happen when we take her home. So now not only does she have to get rid of the lasix, but the caffeine too. I have a feeling these last weeks are going to go so slow.

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...

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!!"

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!

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!

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.

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.

Cartilage

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

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: