Thank God for my Aunt Sandy...

So I just want to publicly thank my Aunt Sandy for coming to visit this weekend from Austin to help us out. I think I'd probably be in the hospital right now from exhaustion if she hadn't come in. Kamryn has been really great, she sleeps pretty much ALL the time, she's only awake when it's time to feed her...but for some reason from about 1 am to 4 am, she's been very, very fussy...so unfortunately mommy doesn't get much sleep at night. Thanks to my aunt being here, I was able to take a nap this afternoon...which is good since I'm starting to get sick. Not sure what I have, but I know I've been fighting a fever since yesterday...hoping it's nothing contagious...but until I know for sure, I can't go visit my little Kayla in the hospital. It's killing me to have gone two days without seeing her!

Kayla appears to be doing well from what I hear. They have upped her feeds to 12ml every 3 hours on a special, pre-digested formula and she appears to be tolerating that well so far. She's had a couple of poopy diapers already which makes me hopeful that she is doing better. She is scheduled for a test tomorrow to check for kidney reflux, which may be what caused her UTI. Other than that, we are just trying to fatten her up and hope that her digestive system cooperates.

Kamryn had her first pediatric appointment today! Not much to report from that except she decided to have her first "let's spray mom and everything else with poop" accident. Yeah, that was fun. Next appointment is for her immunizations next week.

Hoping they are right...

The official word on Kayla is that they don't see any obstructions or problems with her intestines. They are thinking she had an infection there again or her UTI was causing the irritability...whatever the case, she seems to be doing better right now so they are going to try feeding her again and see how she does. I feel like I've seen this movie before, but I'm hoping it's a better ending than the last one! The Dr is optimistic that if all goes well we could have Kayla home in two weeks...I'm cautiously optimistic that she is right.

Kamryn is doing great here at home. She's given us quite a few scares with the Apnea monitor already...we are thinking they are false alarms, but they scare the crud out of you when they go off...whenever we run over (and I mean, I run over), she's just fine. She also had a rough night last night and kept Kiko and I up from about 1 am to 4 am crying. I knew that was coming and I'm just thankful it wasn't in stereo yet. The nurses all said the first week is kind of tough for preemie babies that have been in the NICU for so long...to suddenly go to a place where it is quiet and dark at night kind of scares them. So we left the bathroom light on and hoped for the best.

Other than that, Kiko and I are exhausted and trying to just keep chugging...I've been going non-stop for the last 24 hours...if I slow down I realize how tired I am!! We aren't sure we'll be able to make it to the hospital to see Kayla today...I tried to drive to the Dr this morning and almost fell asleep so probably not the best idea right now. It's killing me to not see her everyday, but they have a "cuddle" program, where they have volunteers who go up to the hospital for parents who can't be there and just hold the babies. I wish it was me doing that, but I just haven't figured out that cloning thing yet.

Woohoo!!

Kamryn is HOME!!! I'm so happy (and a bit stressed)!!! She just had her 6 pm feed and is resting comfortably so I have a few minutes to update the blog before we start all over again. The hardest part right now is trying to resist the temptation to clean the house and do laundry!! I'm excited as my aunt is coming to visit tomorrow for the weekend so I'm sure having the extra set of hands will help me out. Plus the fact that I feel like I have no clue what I'm doing so she can give me some advice. Here is a picture of her on our ride home from the hospital...

Kayla was resting comfortably most of the day. Both Kiko and I got to hold her today which I hope did her as much good as it did me. She had her upper GI done this afternoon but we won't have the results of that until tomorrow...so the wait continues. Tomorrow we should hopefully have some real answers and a plan of attack to get her home soon!

Sorry this is so short!! More tomorrow!

Only one more night...

Tomorrow is the BIG DAY!!! We get to bring our beautiful Kamryn home from the hospital!!! Kiko and I are so excited, a little scared, and very sad that we are only bringing one of our babies home. The sadness will only be temporary though.

Little Kayla continues to confuse the Dr's. She had her barium enema this morning and the results were inconclusive so they will have to do the contrast dye through the stomach now. They have to wait for the dye from the enema to pass out of her system before they can do the next study so that won't happen until late tomorrow or Thursday. The results did show that something was going on, but they can't tell if it is a stricture due to the NEC or if she has a type of congenital defect where her intestines are kinked/in the wrong place. They are two different types of surgery depending on what she has so they need to keep testing in the meantime. I feel better that they are narrowing in on a cause and hopefully they can fix it quickly and get her eating again. Obviously the longer she goes without food, the more problems she will have with growth and the longer she'll need to be in the hospital. What I really want to do is hold her, it's been almost a week since I've held her last...everytime I am there she is resting comfortably and I don't want to disturb her. :(

Day 45 in the NICU...

So I'll start with the good news today since I always seem to start with bad news. Kamryn is doing fantastic and the Dr's think Wednesday is looking good for her to come home!!!! She passed her sleep study with flying colors and the Dr doesn't think she needs to come home with Oxygen which is a relief. She will have to come home with an apnea monitor and on caffeine and zantac (sounds like me after a night out on the town...). She passed her hearing exam and head ultrasound, now we are waiting on the car seat study, eye exam and an ultrasound of her kidneys. It's really, really hard though because as excited as we are to have her home, we feel guilty that we can't be more excited when Kayla is so sick and having to leave her behind. It is a mix of emotions that neither Kiko nor I are used to.

As for my little fighter, Kayla, she is still sick. They are going to redo her urine cultures to make sure that the antibiotics are working on the UTI and they are also going to do some tests on her intestines. They were hoping she would get better and not have to do the tests, but it's just not happening yet. They will start with a barium enema to check for blockage from the bottom up and then a contrast dye through a tube into her stomach to check from the top down. If there is a partial blockage than they will have to do surgery to remove that portion of the intestine. The hopeful news is that since she is not as distended as she was before, they are hoping it would only be a small section needing removal and they can close it right back up. If it is a bigger piece needing removal than they may need to do an ostomy, which is where they bring the two ends up to her abdomen and has a bag for her waste. The bag would need to be in place for several weeks (I think I read up to six weeks) and then they would go back in on another surgery to reattach the two ends. I'm really praying that they don't have to do surgery on her, she's been through so much already. They are also telling me that she may need to be on a special formula now and probably won't be able to have breast milk or regular formula to help her intestines absorb nutrients better. I feel like I'm on an episode of 'House' with poor Kayla...just trying to figure out what is wrong with her...
So...now the real stress will begin with having one baby home and the other still in the NICU...I've been warning people that if my number pops up on their cell phones and all they hear is sobbing on the other end, that will be my call sign to hop in the car and come save me...

Another setback...

Well, the Dr's had hoped that the antibiotics would be working their magic on Kayla's UTI, but it turns out that she may also still have a partial obstruction of the intestines or other problem going on. They were hoping to be able to start her feedings again today so they could avoid having to put in a PICC line. They tried inserting an NG tube and her belly got distended again and an xray showed that she wasn't passing gas through her intestinal track again. So they are going to give the antibiotics another day to keep working and then they are going to do a surgical consult and decide how they want to proceed. They were having a heck of a time putting in an IV when we left because they couldn't find any veins that were good enough (they had shaved another portion of her head to look as well, which really sent Kiko over the edge). We had to leave before they were done working with her which just killed me. I just talked to the nurse and they weren't able to insert the PICC line the first time so they are going to try again tonight...if they can't get it in tonight they may have to do it surgically which is a whole other risky issue.

Kamryn continues to do well...it looks like Wednesday is the earliest she can come home. We are so excited about that, but it's bittersweet with everything Kayla is going through. I just want to spend all day and every day with them both, but now I will have to divide my time (along with hours in the car going back and forth).

Please continue to keep them both in your prayers.

A little bit of info...

Well, we now know that Kayla has a Urinary Tract Infection for sure from her tests. Is that causing all the problems with her bowels? We aren't sure. It can have that effect, but she's still a long way from being better. The good news is that the antibiotics seem to be working, her fever has gone down and she is not as distended in the bladder. The bad news is that she will have to be off feedings for at least 10 days to give time to get rid of the infection. She will also have to have testing done of her Urinary system as having an infection this early in life is a sign that she may have some problems anatomically...so they will have to do xrays and testing all the way up to her kidneys. In addition, she's not completely out of the woods as far as having a partial blockage of her intestines still. However, they want to wait and do the dye testing for that after the 10 days of not feeding. They will have to keep her on IV fluids in the mean time, so they will have to place another PICC line...which means she is susceptable to more infections...it's a vicious cycle. So basically we have part of the picture and hope that is all it is. I'm guessing she will be in the hospital another 3-4 weeks.

The good news is that Kamryn is doing fantastic right now and it looks like she will be able to come home as early as Tuesday or Wednesday assuming she passes her remaining tests!! She had a hearing exam today, but they will need to redo it before she comes home. She has an eye exam and head ultrasound on Monday, a car seat test tomorrow, and a sleep test tomorrow night. I can't believe she is so close to coming home!! We are thrilled but also worried about dealing with the apnea and also having to have one baby at home and the other one in the hospital...that is going to be beyond stressful for us. If anybody knows how to clone me, I'd really be interested in that right now. I'm trying to figure out how to handle work, being home with one newborn and taking care of another one in the hospital...oh and sleep in there would be nice...

Here are some pictures...I don't think I need to explain who is who right now...but poor Kayla had her head shaved in two places...poor baby :(

Still waiting...

Not many answers on Kayla's condition today. The Dr's think she either has an infection of some sort (Viral or Bacterial) or she might have a partial blockage of her intestines. She has been running a low grade fever all day, still has tenderness in her belly, and has a buildup of gas showing up in the xrays. So not much change from yesterday. She is acting fiesty which makes me feel better, yesterday she was very lethargic...so I'm glad to see her having the energy to fight. She did have another blood transfusion last night, so I think that helped. So the plan for the weekend is to give the antibiotics she is on a chance to work while they wait for all the lab test results to come back. They don't want to run the test needed to check for a blockage until they are sure she doesn't have an infection first, so that will wait until Monday (or earlier if she gets worse). But for now she is stable and hoping that the antibiotics start showing signs of improvement.

Kamryn was moved to an open crib today which was awesome!! She is doing very well in it and has not had any apnea episodes since yesterday morning. The Dr's think she will come home next week some time assuming she continues to pass all her tests. We had a great day together, she did much better at the breast feeding today (although, I think she really just slept most of the time). I then fed her a bottle and she plowed through it in about 10 minutes. Then I let her sleep kangaroo style on my chest for about 90 minutes which was just heaven. I think we both needed that time together. I feel so guilty that I can't give Kayla that much attention, but she is just so sick that I can't hold her right now...that is the hardest part, not being able to comfort your baby when she needs it.

Kiko and I got to see our great friends Melanee and Chris tonight!! They live in Utah and participated in the same clinical trial as us. Melanee and I met over the internet on a fertility forum when I posted about the opportunity for a clinical trial for IVF here in Houston. We became friends online and she flew out to stay with us for a month while she went through her treatments...she has become the little sister I never had and just love her and Chris to death. They also ended up having beautiful twin daughters born EXACTLY one month before our little girls so we call them cousins and can't wait till we can all meet as families!! I miss Melanee and Chris so much and hate that we only get to see them a couple of times a year so I hope they will come back soon....perhaps for our annual crawfish boil!! :). I'll post a pic of the four of us when I get it!

Update on Kayla

Today has not been a good day. Kayla is very sick and the Dr's aren't positive as to what is causing it. She is having her blood checked, had a spinal tap to check her spinal fluid, urinalysis, x-rays...you name it. She is showing some signs of having a possible partial blockage on the right side of her intestine. They are going to continue watching her and doing another xray tomorrow morning. If they can confirm that she has a partial blockage, she will need surgery to remove that portion of her intestine. I don't know what I hope for...if it will make her better, than I hope that they do find something so they can fix it. It's the unknown and the "we're not sure" comments that are killing us. I don't know how many times I can hear "it's normal for preemies" or "we don't know" as an answer...it's very frustrating and scary. Poor baby has been moved back under a radiant warmer bed and has already had four IV's not work because her veins are pretty much shot. Her head is shaved in two locations from them trying to find a vein there that would work and she has little pricks and bandaids all over from other attempts at an IV. It brought us both to tears seeing her like that. Every time I think things are getting better something like this happens...I'm surprised I'm still functioning at this point.

Kamryn is doing better today, she only had one apnea episode since they started her back on the caffeine. She is tolerating her feeds and is on 8 bottles a day now!! I think they are going to try and move her to an open crib tomorrow, which is a HUGE step!! They are still getting ready to try and send her home, but the earliest will be next Friday and that all depends on her apnea episodes. In the meantime, she continues to get stronger and weighs 6 lbs, 5 oz. We tried breast feeding again today, but she was being a DIVA and not having it. We'll try again tomorrow...

I'm going to try and get some rest and say some prayers that tomorrow will be a better day than today...

3 am phone calls stink...

It's 3 am and I can't sleep so I figured I'd update the blog. The hospital just called and said that Kayla was sick again...they aren't sure what is going on yet, but her belly was really hard and distended so they want to run some tests and do a study to see if she has a blockage in her intestines. She's not acting sick, so they don't think it's the NEC returning or an infection. They have stopped her feedings AGAIN and put her back on IV fluids to give her bowels a break. The strange thing is she had a HUGE poopy diaper last night when we were there so I'm really confused. I have been worried about her throwing up her food so much and asked the Dr many times and he still kept increasing her feedings which bothered me...so I'm planning to go up there and grill him on that today. If she does have a blockage (I think the technical term is called a "stricture"), they may need to do surgery. I'm not sure how much more of this stress I can take...especially when I see my little fighter so sick. Please keep Kayla in your prayers as she fights yet another battle. Oh and maybe some prayers that Kiko and I can keep our strength and calm through all these obstacles too!!

I've lost count...

I am so tired that I can't even count how many days the girls have been in the NICU, but I know it's a lot. Not much to report today...Kamryn had another apnea episode this morning and again while I was feeding her, so they started her back on the caffeine. Will talk to the Dr tomorrow about the plan. Kayla is doing well but still having trouble keeping her food down even on the Zantac. I know they are improving, but sometimes it is so hard to tell. Here are some pics, I'm off to bed!!

Here is Kayla trying to stay awake!


Kamryn after she finished eating

Kamryn and her "Woe is me" pose!! Oh yeah...look MA, NO TUBES!!! Don't you just want to kiss those cheeks!?!?!?

Thank God for plexiglass!!

OK so funny story...we went to go visit the girls tonight and did our usual routine of taking the girls' temperature and changing their diapers before they get their bottles. I had just changed Kamryn's diaper and she had a little bit of poop on it, but not much. The nurse needed to weigh her so she was getting her ready for that and realized Kamryn was trying to poop again (she told me not to put the new diaper on yet). So she was cleaning up that little bit when all of a sudden we hear this "POP"! Kamryn basically EXPLODED poop and it shot against the wall of the isolette!! The funny part was Kiko was sitting DIRECTLY on the other side of the wall of the isolette and would have gotten a FACE FULL had she been in a regular basinette! We couldn't believe how much there was, it was everywhere!! We had a pretty good laugh over that...and just to embarass our little girl, here is a pic! LOL!


So on a serious note, Kamryn had two more apnea episodes again today :(. I'm so sad, because she can't go home for at least 5-7 days after an episode and even then I'm worried she will continue to have them with us. I don't know why after almost two weeks without one, she's suddenly having them again. The Dr's will probably start her back on caffeine again tonight or tomorrow, which means we will probably have to take her home on it now too. She had one tonight with me after I finished feeding her...I hate when she does that...it's so stressful on me.


Kayla continues to do well, she finished both her feedings today in less than 30 minutes which was great. She is still throwing up some which worries me...they have started her on Zantac to try and help. Kamryn may also get it to help her reflux issues as well. Other than that she seems to be doing well.

Chubby babies = Happy mommy!

I call Kamryn my little "chunky monkey" because she looks so big next to Kayla...she broke the 6 lb mark today!!! She now weighs 6 lbs, 2.3 oz and is doing so well! We had our first attempt at breast feeding today (sorry to those who feel that is TMI)!! The nurse called her the pirahnna which is what it felt like...but she did great! She was awake all through the feeding and after so we had some really good bonding today. They are bumping up her bottle feedings to 6 times a day today and then maybe 8 tomorrow!! Things go really fast after this, so she could be home as early as Saturday or Sunday!! We are starting to get calls arranging for appointments for her, so I feel the end of the NICU stay for her is near!

Kayla is also doing really well! They have upped her feedings to 40 ml every 3 hours! She is starting to put on real weight now and is at 4lbs, 5 oz!! She looks so beautiful without any IV's sticking out of her. She is on bottles twice a day and they may try 3 times a day tomorrow. Not sure when she will be able to come home, but I'm hoping it will be with her sister or very soon after.

Kiko and I will be going back to the hospital this evening so we'll try to take some more pictures, but we might just be holding them and snuggling so no promises!

37 weeks...

Today I would have been 37 weeks gestation if I were still pregnant...so technically the girls are only -3 weeks old :).

They are doing great today! Kamryn is starting to do really well with the bottle feedings, she finished her bottle with me today in 11 minutes! However, she did have a setback this morning. After 13 days without an apnea episode, she had one today. I was crushed hearing the news because I was hoping they were all behind her. This restarts the clock for her and she now has to go at least 5-7 days without an apnea episode before she can go home...so she won't be coming home any earlier than this weekend assuming she doesn't have any more. She was also a naughty girl last night and pulled out her NG feeding tube and had to have it reinserted. Other than that, she is doing great! I think she's still stalling so Kayla has time to catch up!

Kayla is now IV free!!! WOOHOO!! I can't tell you how nice it was to see her without those extra lines everywhere! Now she just has to work on her feeding. She seems to be having some problems digesting her food, but they don't seem too worried about it. She has scared her dad and I a couple of times by throwing up her food twice now on us. And we're not talking spit-up, we're talking the whole shebang coming up. I'm hoping they are right and it's not a big problem...but I'm of course nervous since she had the NEC episode.

Day 37 in the NICU

Not much to report today so far, which is a good thing...We have pictures though (which is why you all really check this blog...I know it...lol). Joey got to go with us today and hold Kamryn after her feeding...

Kamryn is getting so BIG!!! She weighs 5 lbs, 14 oz! She has been doing better on her bottle feedings so things are progressing nicely for her. She's been a good girl, except the nurses say she likes attention :).

Kayla is doing well so far today...we are still praying she can hang on and not have to get the PICC line put in...I hope she can do it. She weighs 4 lbs, 3 oz...she's starting to lose all that water weight she was gaining now, but they have upped her feedings so hopefully once she gets off the IV and can get more food, she will gain "real" weight. The nurses all talk about Kayla's temper...when she is mad or upset, she really lets them have it! Yes...that would be our daughter...she doesn't want to be messed with, just like mommy and daddy!

Happy Valentine's Day!!!

I was really hoping to have the girls home as my Valentine's present...but no such luck. But we did get to see our precious babies this morning for a while...which always makes me feel good. Things were pretty quiet today which was good.

Kayla is hanging in there and doing well. The poor thing has an IV in a different body part every time I go in...the Dr is trying to hold out till tomorrow and if they can do that, then they won't have to put the PICC line in. So please pray that she can make it to that point...then she won't have ANY IV's!! That would be a huge step and really will help her get home sooner since the risk of infection is much higher with IVs and PICC lines. They have upped her feedings some more and they are having the Occupation Therapist (OT) come in next week to help her with her bottle feedings. So far she seems to be handling the food better also! Just one day at a time. The nurses do tell me that Kayla has quite the "attitude" and let's it be known when she is unhappy!

Kamryn is chugging along. She gave Kiko and I a big scare last night during her bottle feeding...she stopped breathing again and had to be whacked on the back a few times to get her breathing and heart going again. We aren't sure if she was choking due to reflux or what, but it was very scary and I'm so glad the nurses were there. She will definitely be coming home on a monitor until she gets this whole feeding thing down. She does really well, but we will just have to watch her closely for a little while.

That's about all for today...been pretty quiet which is a nice change...

5 week birthday!

Today is the girls' FIVE week birthday! Woohoo! Things are progressing...

Kamryn is now feeding on a bottle 4 times a day (and via gavage tube the other 4 times a day)...she's halfway to her goal! They expect to bump her to 5 bottle feedings tomorrow. Next week is going to be a busy week for her...assuming all continues to go well with her bottle feedings, they will start working on getting her ready to come home. There are a lot of steps to pass, she has to finish all 8 bottles within 20 minutes, she'll be moved to an open bassinett and make sure she can maintain her temperature, she'll have a sleep study done to make sure she doesn't have any problems, then they will check how she does sitting up in a car seat for 30 minutes...they think she might be able to come home next weekend assuming she passes all those gates!! I'm so very excited!

Kayla is doing well except the poor thing keeps having to have IV's moved around on her...her poor little veins just get so weak from all the fluids and every day they are having to move her IV...she's running out of places to poke now so they are really trying to get the PICC line in soon so they can take out the other IVs. They are planning to try and do the PICC line tomorrow morning, they have to wait 48 hours for the infection bloodwork to come back. The good news is they ended up not having to do the spinal tap because they think she's doing better. Whew! She's probably got a good three weeks longer in the hospital ahead of her, assuming no more setbacks.

Kamryn is now up to 50ml of milk per feeding and weighs 5lbs, 12.8 oz. Kayla is up to 15ml of milk per feeding and weighs 4 lbs, 11.6 oz!

Just a few pics...

Mommy is very tired, we just got home from the hospital (again) and I'm too exhausted to type anything right now...but here are a couple of pics from tonight and I'll update everyone tomorrow :)

Here is our beautiful Kayla...(NO TUBES!!!)

And our beautiful Kamryn....

The yo-yo continues...

Poor Kayla just can't catch a break...they think she has another infection, this time in her left arm where they had an IV earlier this week. They just ran blood cultures this weekend and nothing grew, so they are going to do it again and now they want another spinal tap. Poor baby. They also ran out of room for an IV, so they have it going into a vein in her head which just really makes us upset (although she seemed to be completely ok with it)...I know this is all harder on Kiko and I than it probably is on her.

She also had a setback Tuesday in the feeding department. They started her on her first feed of 5 ml and when they went back to check before her next feed, they pulled out 4ml from her stomach which means she isn't digesting her food yet. So they had to stop her feedings again...according to the Dr's this is just going to be a long process to get her body working right. They will give her one small feeding (by bottle, not by tube which is a good thing) a day and wait to see how long it takes for her to digest...when it starts to improve they will increase her feedings slowly. The bad news is that she will have to have another PICC line inserted to help maintain her nutrition and fluids.

I got to hold her for over 90 minutes last night which was wonderful...she was so restful and content, I could have stayed there all night. Oh and she now weighs 4lbs, 3.4 oz!!!

Kamryn is just chugging right along! She is now up to 3 bottles a day (the rest by tube) and she's finishing them all in about 15 minutes which is fantastic!! Kiko and I both got to each give her a bottle yesterday which really made us both happy. She now weighs a whopping 5 lbs, 11.6 oz!! She hasn't had an apnea episode in 9 days either! I have a feeling she may be coming home very soon! I'll be very happy to get her home, but I also don't like having to leave one baby behind...I don't think that will help improve the stress levels any...mainly because we'll still have to go to the hospital every day (which is almost an hour away) AND be doing it on no sleep. Good thing God doesn't give us more than we can handle!

Finally a good day!

Today was a pretty good day for the girls! They both did really well with their eye exams (although I heard Kayla was not liking the exam part)...no evidence of ROP but they will need to have another exam in 2 weeks to make sure their eyes are developing like they are supposed to. That was a relief to hear. Both girls head ultrasounds showed that their IVH's are slowly going away and not increasing which is also great news!

Kamryn has been upped to two bottle feedings a day now which is exciting! She did really well on both, finishing within 25 minutes. The OT thinks she will be ready for four bottles a day maybe by the end of the week! Kamryn now weighs 5lbs, 7.8 oz.

Kayla was given the all clear to start her feedings again! So at 2 pm, she received her first 6ml of milk. I haven't heard how that went yet, but will check on her later tonight before I go to bed. Kayla also now weighs 4lbs, 1.7 oz!!!!! I think that she is still retaining a lot of water weight though from all the medications that she is on and she is on a diuretic every other day right now to help control that...so her weight may come back down some. One of the side effects of being on diuretics for too long (like she has been) is the possibility of kidney stones, so they are trying to be conservative in their use of it.

The girls continue to be very fiesty according to the nurses. I don't seem to get many reports of how sweet and great they are...I get told how "fiesty" and "spirited" they are. LOL. One nurse put it great...she said, "They want to be out of those isolettes and allowed to lay on a blanket and look at the world...not hooked up to wires and messed with every three hours". I can certainly understand being "fiesty" and "spirited" when put that way!

Thank you for everyone continuing to pray for our little girls...it means so much to all of us! I'm hoping that we are getting out of the rough part and nothing but improvements continue to happen! I'm hoping we will have our little ones home with us by the end of the month.

Off to the hospital...

I started back working again today so I'm going to post before I go to the hospital this time...hopefully there isn't much new to report. I checked in on the girls earlier and it seems they are being a bit naughty with the nurses! Let's see...Kamryn decided last night to pull out her NG tube, which is the tube they use to feed her. It's a thin tube that runs down from the nose into the stomach. So they put it back in, then after she ate, she decided to pull it back out again. Me thinks she's not liking the tube in her nose! Then Kayla was upset most of the night, I'm sure from hunger and not feeling well. She was caught throwing her pacifier across the isolette on more than one occasion! LOL! I think they both have some of our tempers coming out...Kiko and I are in for some trouble later! I'm not sure why Kamryn is agitated, but I can sympathize with Kayla. Maybe Kamryn is just trying to get some of the attention or she feels Kayla's pain.

Both girls have gained weight. Kamryn weighs 5lbs, 6.8 oz (which is now more than what I weighed at birth so that makes me happy). Kayla weighs 3lbs, 13 oz (but I think some of that is water weight). Kayla also had one of her lines removed this morning since they stopped one of her antibiotics for the NEC infection...woohoo!! Now our little fighter is only on two antibiotics. I haven't gotten the results from their head ultrasounds yet, so I'll post those when I get them.

Tomorrow is a BIG day for both girls. They will both get their eyes checked, which I hear makes them a bit aggitated as they dilate their pupils...just what they need...to be aggitated...ugh. Kayla will also start back on her feeding...please say some BIG prayers that she does well. This is a huge step for her to come home...one of the potential problems with the NEC infection is she could have a blockage in her intestines from scar tissue and could end up needing surgery...we definitely don't want that to happen. It will take a few weeks to make sure she is completely healed.

Day 30 in the NICU

Kayla is hungry. She wants food and she wants it now. Poor thing has to wait till Tuesday. I'm ready to see my happy, content girl back again. She is not a happy camper right now. Poor thing has been stuck so many times, is fighting two different infections, can't eat and gets messed with all the time. I'd be upset too. The only time she was quiet while we were there was when I got to hold her. Then she was out like a log! So far she is stable. She had her blood transfusion yesterday so she looks a lot healthier and I think the antibiotics are working. Kayla now weighs 3lbs, 10 oz.


Kamryn is just eating and sleeping waiting for sissy to catch up. She weighs 5lbs, 5 oz now. She's pretty much chillin' at this point.

Both girls will have head ultrasounds tomorrow and will have their first eye exams on Tuesday to check for ROP (Retinopathy of Prematurity). I am saying prayers that they pass their eye exams with flying colors!!

The birth video!!

Here is the video of the girls being born! Don't worry, it's not gross! LOL! But it is pretty cool if you listen, you can hear the Dr talking about both girls trying to come out at the same time (you can also see them break the amniotic sac and hear the water gushing out and everywhere!)

Poor Kayla just can't catch a break...

Our little fighter, Kayla, just keeps having all the issues. Today the Dr let us know that the PICC line in her leg was infected and needed to be removed. They aren't sure but it could be a staff infection so they are starting her on more antibiotics and running some more tests to see what type it is. So they had to start another IV and the poor baby was screaming at being poked again. On top of not being able to eat, she has to endure more poking and prodding. Then I asked the nurse about her blood counts because she looked really pale to me and sure enough...her hematocrit levels were really low so they are also having to give her another blood transfusion today. They are going to try and start her feedings again on Tuesday and hopefully they will not have to reinsert the PICC line again. The hope is that in a couple of days she will start improving and then with the additional food nourishment, she won't need another IV line...that is my prayer. It took everything I had not to cry while they were working on her...I just kept focusing on Kamryn who was also getting her bottle feed while all this was going on. Here are some pics of Kayla from today (before we found out about the infection):

Kamryn continues to do well, she's tolerating her feedings and gaining weight. She's also gone FOUR days without an apnea episode!! Woohoo!! I hope she continues to do well, but I also think she's trying to slow down some too so she doesn't have to go home without sissy. I really think there is a connection between the two of them even though they haven't been together in almost a month. When one girl is crying, the other girl will become agitated and sometimes cry too...they are both in separate isolettes too so I don't think they can hear each other or tell when the other is upset. It's not like they are competing it's almost like one sympathizes with the other.

Day 28 in the NICU

Today is the girls' four week birthday!! I can't believe Monday will be their one month birthday!!
Here are their weights:
Kamryn - 5 lbs, 3 oz
Kayla - 3 lbs, 7 oz

Not much to report today which is a good thing! Kayla is quite the fussy girl right now, but I can't blame her. She's giving the nurses an earful when they mess with her...she gave daddy an earful too this morning when he changed her diaper. LOL. Just a few more days till our little fighter can start getting some food again. We try not to mess with her too much, which is hard because I really just want to hold her, but I know it's better for her to just let her try and rest and not stress her out too much.

Kamryn is just eating and sleeping! She's been doing great lately and hasn't had any apnea episodes for the last 48 hours!! I hope she keeps it up! She wasn't able to finish her bottle today in her allotted time...I think she was just tired.

The girls had a surprise visitor today...Mom Grace (Kiko's mother) stopped by to see them! Here is a picture of her holding Kamryn for the first time...sorry it's so fuzzy (camera phone).

A better day...

Today was slightly less stressful than yesterday thankfully! I got to hold Kayla again for about an hour which was really needed...she was cranky most of the time (I would be too with an empty tummy)...but we managed. Only four more days before we can start her feeds again (albeit slowly). She's going to get crankier too they said...poor thing. They did manage to fix her PICC line without having to redo it and poke her somewhere else so that was a relief. The baby next to us has his PICC line in his head and I don't think I'd want to see that on my little girl :(.

Kamryn did well with her feeding today...the OT and I tried a couple of different bottles/nipples to see if we could find one that would help slow down her sucking reflex and allow her to breathe better. We will try a couple more tomorrow...we're calling her Goldilocks right now and the bottles are her porridge...we won't stop till we find the one that is "just right"! Fortunately no desats for her today while I was there...whew!!

Here are some pics from my camera phone :)

Kayla chillin'..."gangsta" style...LOL!

Kayla sleeping in my arms...

Kamryn smiling at all the folks on the web...

Stressful is an understatement...

Every day is a step closer to home...I just keep telling myself that...

Kayla: Kayla is doing ok today. They tried to insert a new PICC line last night and it doesn't seem that it was working, so they were going to do an xray and see how it looked and might have to try another location. The PICC lines scare me because they go up near (or in...I forget) the heart so you don't want that to be misplaced or messed up. I was so happy because she had finally gotten the thing removed and now they had to place another one and this one looks like it may need to be moved so that would be a 3rd one...poor baby! I spoke with the doctor and although it looks like Kayla is improving, the real test will be when they start her back on food again. Sometimes NEC can cause a restriction in the bowels that won't show up until after you start trying to feed them again...so it will be a slow process trying to get her started back on food. She is halfway through the waiting period, another 5 days to go before they start her back on foods. Kayla was also moved back to an isolette (incubator) today which is another step forward.

Kamryn: I think Kamryn is making up problems so she can stall and wait on sissy to catch up. Really. She actually has been doing well...except today when I had my first try at feeding her from a bottle. WOW. That was an ordeal. I have to restrict how many sucks she takes from the bottle because she gets so excited about it that she forgets to breathe. That alone is stressful. So we had her on the nasal canula to give her more oxygen and to remind her to breathe...only the nurse didn't realize that someone had turned the O2 off...so poor thing wasn't getting any supplemental oxygen when we thought she was. About halfway through her feeding, her heart rate dropped and her O2 sats dropped and her whole face went ashen/dusky gray. I almost fainted because I knew she wasn't breathing. Fortunately, the nurse was there and realized what was going on and quickly got the oxygen turned on and we got her breathing again. I was so upset because I felt like I had done something wrong while trying to feed her, but she recovered well and was ready for more food so I had to get back on the horse and try again too. Talk about stressful!!!! I get so upset just hearing about her apnea episodes let alone being there and holding her for one...I don't want to ever go through that again. I don't think my ticker can take it!! Here are some pics of Kamryn from today that Kiko took with his camera phone...

Drum roll please...

Kamryn has hit the FIVE POUND mark! Woohoo!! I couldn't believe it when I saw the paperwork, but yep, she's finally reached five pounds! She looks huge compared to little Kayla, but in relation to the full term babies they both still look so tiny! Kamryn was in her mellow mood today...we had to wake her up to eat this morning and she didn't seem to be too interested in it, but she still did well. I took her temperature, changed her diaper and got her out of the isolette and she barely even woke up. We even waited 30 minutes past her normal eating time and she still wasn't upset.

Kayla was asleep most of the day while I was there, which was nice to see that she was comfortable. She has lost a little weight since the NEC ordeal began, but that was expected..she's at 3lbs, 8 oz right now. I did get to hold her today for a little while. Last time I held her was Friday so I think we both needed that cuddle time. She was really fussy just before I held her, but she calmed down once we got all the wires situated...when I had to put her back, she was out like a light...I think the nurses appreciated that. She is scheduled to get another PICC line put back in (they had just removed it when she got sick from the NEC...figures) this afternoon and move her back to an isolette instead of the radiant warmer. The isolette is better for them to help regulate their body temperature. Hopefully she will bounce right back from the NEC infection and be able to eat again with no issues.

Kiko popped in for his lunch break and got to hold Kamryn while she got her noon feeding via gavage tube. She looked so content just staring at me and daddy while her tummy got full. I could just stare into both girls' eyes for hours if they would let me...but they eventually get bored of the crazy woman talking to them so they fall asleep. :)

35 weeks...

Today would have been my 35th week if I was still pregnant...technically about the time I would have delivered if I'd been able to keep the girls inside me a little longer. It's amazing how much has gone on in those short three weeks! Time has flown by already it seems.

Kayla update: Kayla is doing better I think, but we still have another day or so of xrays to go. So far, her abdomen is definitely less distended and there is less gas in her belly and intestines. They don't see any indications of a tear or rupture in her intestines so far which is fantastic news. I hope that we caught it in time. Kayla was quite the fussy girl this morning...which to me is a good thing...I'd rather see her active and moving around than laying motionless and feeling sick. I think she's realizing that she doesn't have any food in her tummy and is getting agitated. I'd be fussy too. She is getting nutrition via IV, but the nurses all tell me that she's going to be pretty cranky the next week because they have to go another 7 days without giving her formula or breast milk. Poor baby...it made me want to cry hearing her wail like that. I can't even pick her up for a few more days either, so that made it even harder. The sad thing is, while she was screaming Kamryn started getting upset and started crying too. I was so torn because I can only touch one girl at a time and I felt like I had to choose which one to try and comfort. At least I know in the real world I'll be able to comfort both at the same time.

Kamryn update: Kamryn had another great feed this morning with the bottle. The supplemental oxygen is definitely helping her finish her bottles...hopefully she'll start learning how to breathe without the additional O2 soon so we can wean her off of that. I think they were going to try and start introducing a 2nd bottle in the evenings tonight which is another great milestone. If they do, than that means I'll get to try feeding Kamryn myself tomorrow. Up until now, an occupational therapist has been doing it since it can be very tricky feeding a preemie versus a regular full term baby. I'm very nervous...but very excited at the same time. Kiko has to work tomorrow so probably won't have any pictures of my first time feeding Kamryn but we'll try.

Day 23 in the NICU

Kayla looked better today so I hope it's a good sign that the antibiotics are working. She does still have blood in her stool and it will be a few days before we know if she is getting better...but she looked less swollen and was moving around a lot better. She was pretty pale so she may need another blood transfusion soon but all in all, I feel a little better.

Kamryn had her first feed today with some supplemental oxygen (basically a nasal canula to help remind her to breathe while eating). She did GREAT!! I was so proud of her!! She finished her bottle in about 25 minutes (the goal being 20 minutes and no more than 30).

Not much else to report today...just taking everything day by day! Thank you so much for all the encouraging words and prayers from everybody!!