Decisions...Decisions...

Well, the time is quickly approaching where we need to decide what to do for Kayla. I think the decision to move her to Texas Children's Hospital has been made and her pediatrician will work on doing that on Monday. My poor baby will be taken by ambulance to the medical center and most likely placed in the Pediatric ICU there. I'm sure the Dr's there will want to run their own tests. My pediatrician will have to transfer the responsibility of her care to a doctor up there that I've never met which worries me. Two of the nurses and the nurse practitioner helped me feel better about the surgeries saying she will be so much better after it and be an entirely different baby. She is in so much pain, that the possible side effects are starting to not seem so bad. The one big downfall is that she won't be able to vomit again (which can be a good thing too I suppose). Of course, if she gets a stomach virus or food poisoning this can make it very difficult for her as that is your bodies natural defense to get the food out. She also won't be able to burp very well, which will also make her uncomfortable with gas pains. But I don't really see many more options if she can't eat by mouth. The long term effects are more dangerous than the uncomfortable gas pains she may experience. And the longer she goes in pain, she will begin to associate eating with pain which obviously causes bigger problems for her. If anybody reading this has had to go through a similar situation, please let me know if there are alternatives I should try to look into.

Oh and I'm starting to get sick which is just horrible timing. I haven't been able to see Kayla much because I don't want to get her sick and at home, I'm trying to avoid holding Kamryn as much as possible for the same reason. I'm trying to rest so I don't make things worse. Ugh...

Happy 3 MONTH BIRTHDAY BABIES!!

Today the girls are 3 months old!! I can't believe how quickly it has gone by already. Some days seem to stand still, but it's gone so fast!! This will be quick because I think Kamryn is about to wake up...

Kayla still continues to have rough feedings. She screamed the whole time I was there for both her feedings and I cried too. The pain she must be feeling breaks my heart over and over again. It kills me not being able to help her. All I can do is hold her and cuddle her as much as I can. The doctor's want to make a decision on Monday as to whether to proceed towards surgery or keep trying medications. I'm leaning towards having her transferred to either UTMB in Galveston or Texas Children's for another opinion and/or her surgery. The pediatrician agrees so pretty much we're just hoping that she can do a miraculous improvement this weekend. The surgeries scare me and there are pros/cons to both of them. My immediate concern is that she get relief from this pain as she is starting to develop an oral aversion to the bottle now because she knows she will be in pain from eating. Here are some pictures of Kayla and her setup at the NICU.

Kamryn is doing well, she still has her gas pains and screaming fits (out of the blue just starts screaming bloody murder). It takes an act of God to burp her sometimes. She is starting to try and smile and I did catch her first real smile this morning. It melted my heart. She's starting to want to be interacted with a lot more now which is so much fun. And I just can't stop kissing those cheeks!!!

One step forward...then...

Sorry I didn't post yesterday, it was kind of hectic between running back and forth to the hospital and home and running errands. Anyway, yesterday was a good day for Kayla...she finished all her bottles (slowly and painfully still) and seemed to be improving. Today was a different story. Poor baby only finished one bottle and half the other bottles so far. All of them were very difficult and painful for her. The ENT came in and did an exam on her throat and esophagus and noted that it was red and raw from the reflux which is not a good thing. That means that her reflux is getting all the way up into her throat and can cause some significant pain and damage. They did a similar exam at the last hospital and they said everything was normal...so either she's gotten much worse or they missed something. They did an incredible job with my girls so I'm not going to dwell on what happened then...I just hope they can figure out how to help her now. They are going to try a new reflux medication, I think, to see if that helps. It will take some time on it though to see if it is working. They don't want to rush into doing a surgery on her if they don't have too so we just have to wait and see how she responds.

I bought her a few toys for her crib and room to help her feel a little more comfortable in there. The nurses have been really good now with her and trying to spend more time comforting her. She is definitely a little more high maintenance than the normal preemie in the NICU since she is older and more "awake" than most of the babies. It's so hard to not be there with her all day and all night to help. It's going to be harder when I have to go back to work next week. Maybe I should play the lottery!

I don't have any recent pics, but here is a picture of me, Kayla and one of her primary nurses Jean from her time at the other hospital. I have another great picture of Kayla and Robert (her other primary nurse) but I haven't been able to scan it in yet. We miss our great nurses over there so much!!

Here is a pic of Kamryn from today...she's trying to smile now...it is soooo cute!! Sorry it is so fuzzy...I had to use my camera phone.

A plan...sort of...

Well, I just got off the phone with Kayla's pediatrician and we have a plan at least. Kayla and I had a rough day...it started off with having a nurse that I really didn't like. She was very rude and condescending to me which just isn't a good thing...for her anyway. Anyway, I won't go into that but suffice it to say, she got an ear full (and so did the charge nurse). It seems that my concerns are being addressed now, which I am happy about. They are going to only have senior nurses watching over her, they are going to put her in a pediatric crib with a tucker sling (they had her lying flat, which is the worst position she could be in with her reflux), they are going to redo her sleep study test and also have an ENT come in and do more examinations. They are convinced that something is wrong and they want to know how to help her as best as they can. So we wait. There is really no estimate for how long she will be in there, but the best answer I could get was "several weeks"...it breaks my heart to have her be in there for several more weeks but it is what is best for her. Now for long term plans...if they can't fix the reflux with medications, than the next step would be surgery. She would need a g-tube to help her get her food into her stomach and help her grow and there is also another surgery called a Nissen Fundoplication where a portion of the stomach is wrapped around her esophagus to control the reflux. These would be the last resort type of procedures if all other treatment fails. Having long term reflux that is erosive to her esophagus is very dangerous so they need to get it under control before she can come home. Please continue to pray for my dear baby Kayla...

Heartbreaking...

Today was heartbreaking...sitting in the NICU (again) holding Kayla as she cried in pain from the reflux was the hardest thing I've had to do. It took everything I had not to cry with her. They have run a few tests this weekend, which confirm that she does in fact have reflux (the tests at the other hospital weren't able to conclude this, but they say timing has a lot to do with it). She also has some problems with her suck/swallow coordination. They ran an MRI this morning to make sure she didn't have any damage to her brain from her previous bleeds and that came back normal which was reassuring. So what to do with the reflux. She is unable to completely finish a bottle right now without writhing and screaming in pain. They are trying various combinations of medications and formulas with thickener and extra calories to help her. I'm not sure what the next steps are though...I think one of them may be surgery to put a g-tube directly into her belly to eat...this won't fix the reflux, but it will ensure that she gets her nutrition and not burn extra calories fighting with the bottle. Hopefully they can get the medications to work to control the reflux pains. Another option is to send her home with an NG tube, but she has mastered the art of pulling that out...something she did three times today alone, so I don't think they will go this route. I have a feeling we are in for a long road with our baby...they hope that she will grow out of this in 6 months to a year. I pray they are right.

Kamryn also is having some problems with her digestion. She's unable to poop on her own without some intervention on our part (either suppository or now we are giving her milk of magnesia). She's very uncomfortable most of the time and cries out a lot in pain from gas/constipation. She only sleeps in spurts of about an hour or two at most. I think we'll need to keep a night nanny for a little while till she can grow out of it...

Other than that, things are going well...Kiko continues to be wonderful and watch Kamryn while I visit Kayla (and do the laundry and the lawn and clean). I'm very lucky to have him as a husband!

Ugh..here we go again...

Well, Kayla is back in the NICU. Didn't quite make it 48 hours at home. She was readmitted because she was having a really hard time finishing her bottles and not consuming enough food. She is supposed to be eating at least 55 ml (almost 2 oz) of formula every 3 hours. She would eat about half of that fine, but then start crying/screaming, refusing the bottle, coughing and getting really congested. They had difficulty feeding her at the NICU before too, but she was improving. We were having to feed her half by bottle and the rest by syringe and even that was getting tough to do...so her pediatrician decided to readmit her and run some tests to see if she was refluxing into her sinuses or some other problem. Of course, as soon as she was admitted, she started eating like she had no problems at all....grrr...they did give her a different formula so maybe that is the issue. The good news is she is at the hospital closest to our house so it makes getting up there to see her much easier than before. The unfortunate thing is if they can't figure out what is causing her problems, she may have to come home on a gavage tube to help her with her feedings...not my number 1 preference for sure, but whatever she needs, we will do...

Kamryn continues to put on the weight! The size difference between the two is amazing. Kamryn is getting close to 10 lbs and is 21 inches long...Kayla is 6lbs and 18 inches long. I don't think we will have a problem telling them apart for a little while...I am praying that Kayla will improve so she can start growing!!

Kayla's home!! For now...

Well, yesterday was an exciting day! We finally got to bring Kayla home from the hospital!! It's been a whirlwind ever since! We ended up needing to hire a night time nanny in addition to the daytime nanny to help us out and keep me sane for the next month or so while we all get adjusted. They did pretty well last night, Kayla was actually much mellower than Kamryn. Kamryn has been very fussy late at night and early morning. It takes a lot to get her calmed down...I think it's colic now at this point (and still some digestive problems).

Kayla hasn't been eating very well since we got her home. She's supposed to be taking at least 55 ml every feeding, but she has only been taking about 20-25 ml and then screams and fights the other half. We took her to her first pediatrician this morning and she said to give it another day but if she doesn't start eating, they will have to put her back in the hospital again to see what is going on. The doctor's ran every test known before and couldn't find anything physically wrong with her...so they are kind of scratching their heads right now. They said she is just a very fussy, irritable baby and just might not be ready to come home yet. They said some babies can spend months in the NICU if needed, let's hope this isn't the case with Kayla. But I'm also ok if she is better off in the hospital for her health. So we'll see how the rest of the day and tonight goes.

I haven't been able to get any pictures of the girls together yet because there hasn't been a time when both aren't screaming yet :(.