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 :(