Kayla's HOME!

Sorry that I haven't posted in a few days...it has been VERY crazy here at home and VERY stressful. Kayla is HOME!! She came home on Tuesday night and I don't think I've slept more than 6 hours since that night. That's with a night nanny helping me too! Anyway...baby girl has been having a rough time since getting home. She's not eating well, just over half of what she's supposed to be taking in and she's really arching and crying with her reflux. I don't think they fixed her problems and we're pretty much back to looking at having the GJ tube surgery again. I really, really, really don't want to put this little girl through any more pain and even the TCH doctors are starting to agree that the surgery may be the way to go now. We are going to wait a few days and see how she does this weekend before we make the final decision. We have an appointment with the surgeon on Tuesday afternoon to discuss what our options are. Please pray that she makes a miracle recovery this weekend and doesn't need the surgery.



Here is a pic I took today of the girls together and awake. I don't get much time to take pictures of them together yet as Kayla is in a lot of pain most of the time and needs to be held upright which makes it difficult to take pictures of them both...but this weekend we will get some when Kiko is home.

Kamryn is 11lbs and 22 1/4 inches long and Kayla is 7lbs even and 20 inches long!

Just some pictures...

Daddy got some great pics of Kamryn today so I just wanted to share...I wish I had more of Kayla, but soon! Kayla is doing really well today...I think this combination of formula and medicine are working so far...let's pray she can come home really soon!

Staying put...

Well, it looks like Kayla will be spending the weekend at TCH. They decided to try another "new" formula which isn't really out on the market just yet to see if that will help her. It's a hypoallergenic formula which helps with milk protein allergies and has some type of probiotic in it to help with digestive issues. They are hoping her real problem may be a milk allergy in combination with reflux. Then they can give her reflux medications in addition to helping her eat. This formula is super thin, so they added the thickener to it and it was still thin so this morning when she ate it, she was very upset because it was coming up on her and she cried just after eating. They were planning to wait on starting the medications to see if she would eat the new formula so hopefully they can try that out and maybe help her feel better. Kayla did not gain any weight last night.

Kamryn is now having more problems with reflux and spitting up despite upping her meds. So now we are going to try the thickener on her too. I feel like we're running two different science experiments on my little girls to get that right combination for them.

In limbo...

Well...at first glance, I thought Kayla was going to come home tomorrow, but it doesn't look so good now. First, she had that HUGE weight gain we all wanted...and then we all realized she hadn't pooped in three days (and she finally did and let's just say it eliminated her weight gain and then some)...so her overall weight gain this week has not been good at all. In addition, she is starting to show more signs of irritability/reflux now. So that has the Dr's scratching their heads because she is on 24 calorie formula and should be gaining weight...and the formula is so thick, she shouldn't be refluxing. They were going to just send her home on some reflux meds (that she's already been on) but they realized it wouldn't help her with the formula she's on. So now I feel like we are back to square one. The neonatologist and I talked and we both felt it would be best to try and figure out what is going on with her before they tried to send her home. I really don't want to have to just bring her back a couple of weeks later. This is like watching Groundhog Day...same thing over and over and over...

Anyway, they did a urinalysis and blood culture and everything looks fine, no urine infection or signs of anemia. They are also looking at a milk protein allergy and possibly a metabolism problem. So they are going to try different formulas (been there) and different medicine combinations (done that) again and I think run some more tests...sigh...

Crunching the numbers...

Well, it would seem that the only thing really holding up Kayla coming home is weight gain. As of today, she is still 5 tiny grams down from what she was when she was admitted to TCH. In order for her to go home, she has to have an average of 10grams gain over the past week. Well tomorrow is a week...so that means she needs a BIG weight gain tonight in order to go home tomorrow. They are also going to run a blood test and a urinalysis to check for anemia and a urine infection. These are two things that can cause problems with weight gain. She's on 24 calorie formula (normal is 20 calories) so she "should" be gaining weight. Let's keep our fingers crossed!

Great news!

The good news is that Kayla will not need surgery!!! The better news is that she may be home by this weekend!!! We are beyond thrilled and pray that she will continue to improve and put on some weight!! Kamryn also went to the doctor today and got an increase in her meds, so hopefully this will help her reflux problems too! Kamryn weighed 11lbs today and is 22.25 inches long!!! Amazing!!

Thank you all for your continued prayers for our daughters! We can't thank you enough!! It will be such a relief to finally be a family...after 3.5 months, I hope that this is the end of our NICU days!! And I plan to get some professional pictures done very soon of our beautiful girls (instead of my camera phone ones)!!!

A small step...

Well, I think Kayla's surgery will be "officially" postponed tomorrow when the surgeon comes on duty. She's still drinking well from the bottle although I noticed some arching and "reflux" type behavior this afternoon. They are going to continue watching her for signs of problems and I've asked for a GI consult from the Dr that has been following her from before (she's from TCH). The fortunate thing is her GI doctor just happens to be the GI attending for the next two weeks so that worked out well.

Kamryn has started having more problems with her reflux now. I am hoping it is something simple like upping her medication to compensate for her weight gain, but poor baby has been really uncomfortable with her feedings and not finishing her bottles now. Tonight she spit up with a burp and she screamed in pain for almost an hour. Then she burped and spit up again and started choking...then she screamed again for another 20 minutes. Fortunately, I had told the GI doctor on the phone this morning that Kamryn was starting to have problems like Kayla and she said I could bring her in tomorrow and she would look at her and develop a plan with me for both girls. This was a HUGE break because she's never seen Kamryn and it normally takes 4 weeks to get in to see this Dr, so for her to let her come in the next day was such a relief!!

I hope we can get both girls reflux problems under control soon...they say they most babies grow out of it, so I'm just hoping that happens very soon. On a lighter note, Kamryn has started pooping on her own now (I know you all are excited...lol). Never thought I'd be so happy to see so much poop!!

Finally...

We finally were able to get Kayla and Kamryn together after only 3.5 months!! Even though Kayla came home briefly, we didn't get a chance to get a picture of them together! You can tell the difference in size now! Kayla is weighing 6lbs, 10 oz and Kamryn weighs about 10lbs, 10 oz.

Kayla is doing great with her feedings. I fed her twice today and she ate both feedings within 20 minutes. I'm starting to get the feeling we may be able to get away without surgery, but I have a feeling they will need to work with her for a little while before we take her home because the last thing we want to do is have to bring her back. The funny thing is she is on no reflux medications and only eating Enfamil AR with added thickener (which makes the formula REALLY thick and therefore doesn't cause the severe reflux). She is still refluxing, but not nearly as bad as before...not sure if it will get worse, but it's better than it was. The nurses also said they may send her home on the red nipples and work with the hospital to get us a bunch of them since we can't buy them. I will find out more tomorrow after I talk to the Dr's.

So what does it mean...

Well, Kayla is eating like a champ today. I'm not surprised though because she went 36 hours without any food so I'm sure she was very hungry. I'm not going to read into this too much since she did the same thing when we took her to CLR. I'm praying that maybe she is doing better, but everytime I think she's doing better she slows down again. The one thing that they are doing is using what is called the "red" nipple which flows faster and has a bigger opening. The only problem is that she can't go home on the red nipples. So why feed her with something she can't go home on. She ate well with the red nipple at CLR too and at Women's. They also weren't on full feeds either...so tonight and tomorrow will tell if she continues to eat. I will be thrilled if we can avoid the surgery, believe me...but eating well for one or two days doesn't convince me that she is suddenly "better".

Cousin Jennifer from NYC is in town this weekend visiting along with my aunt...so a HUGE thank you to them for staying and watching Kamryn while Kiko and I came up to the hospital to see Kayla.

Update: Kayla started having her reflux pains at her 5 pm feeding. The nurse was surprised because she hadn't had any problems before that point...I wasn't too surprised though. I'll be checking on her 8 pm feed shortly...

Another delay...

Well, last night we got Kayla all settled into her new home at TCH Level II NICU. They were unable to feed her last night because they had planned to do her surgery today. They also had a really hard time getting an IV put in because her veins are so shot. This morning they put an NG tube in to try and feed her some, but she (of course) managed to pull it out (can't say I didn't warn them). When we got there this morning, I was told the surgeon would be by at noon...at about 3 pm, the nurse called her and I was told they weren't going to do the surgery today. Instead, the doctors basically wanted to see how bad her reflux was for themselves before perfoming the surgery instead of relying on the other TWO hospitals accounts. Which of course means putting her in PAIN to see how bad it is. I wasn't happy. But I'm tired of fighting. Some people believe that they can just change her formula or change her meds...well, two other hospitals have tried different formulas and all the meds known and still she is in pain. I don't know how long this is going to go on...but basically they want to see how she does this weekend and decide from there what to do next...

So we wait...again...

3rd NICU in 3 months...

Well, Kayla is now at TCH NICU...that makes 3 NICU's in as many months. Hopefully this will be the last. It was quite the ordeal to get her there, but it is considered the best Children's hospital in the region so I feel very relieved knowing that she is in great hands. I don't know what the surgical plan is yet, but I hope it is soon. It has been very difficult getting to this point and Kiko and I did not come to the decision easily to have the g-tube put in...we wish we didn't have to.

I am relieved to have her out of Clear Lake Hospital though. It has been a nightmare there and as if I needed more reasons to do the surgery...they put the NJ tube in to feed her with yesterday and after it was in, they realized there was a "kink" in the tube so they were unable to feed her through it. So they had to put an NG tube in through the other nostril so she could eat. Needless to say, I was VERY upset when I walked in to see Kayla and she had a tube coming out of the other nostril and MORE tape!! So this NICU was the one to try and convince me not to do the surgery but instead to go with the NJ tube and then THEY SCREW UP PUTTING IT IN! The funny thing was, the nurse said that Kayla pulled out the new NG tube they put in TWICE and she had managed to pull a portion of the NJ tube out as well...and they wanted us to bring her home with one of those tubes. I think Kayla has a much better chance of living a "normal" life with the g-tube.

I'm off to pick up my Aunt Sandy from the airport and then we will head up to TCH to see Kayla and make sure she is comfortable. Here is a picture of Kayla as she was leaving CLR...the transport team let me put her bear in her isolette with her :).

Moving day...

Well, I think the Dr's and I are all on the same page finally...we are actually meeting at 1:30 today to make sure we are all on the same page. Kayla will be moved to Texas Children's Hospital (TCH) either tonight or tomorrow and her surgery will be either tomorrow or Friday to put the GJ tube in. She'll then be watched for 48 hours and then we can take her home. I pray this is our last hospital stay for a while!

Kayla has a long road, she will have to endure some physical therapy to help prevent a food aversion. I'm not sure what all that entails, but we'll do whatever it takes to help her.

Well, I made a decision...

...and I'm regretting it. Sort of. Kiko and I agreed that the G-tube surgery was the route we wanted to go. I told the Dr our plan, but she wasn't sure when the surgeon would be available as she was going on vacation. I told her in the meantime, we could put the NJ tube down Kayla's nose until the surgeon got back and see how she did with it. I'm regretting having done that because the tube is HUGE and it goes all the way down to her FEET!! Plus, they have so much tape over her face, all you see are her eyes and lips. Kiko is so upset and I'm not very happy about it either. They are planning to send her home in 48 hours with this setup unless she pulls it out or acts very unhappy. Well, she can't possibly pull it out because they have her swaddled up 24/7 right now so she can't get to it. I told the Dr I hated it and that it was going to impossible and inhumane to keep her swaddled 24/7 for the next 3 months and that I wanted it out. Somehow, it was communicated that I wanted her to keep this and not do the surgery. Anyway...I'm hoping it is straightened out soon...but if they do release her like this we will not be happy. I'm so tired of fighting with doctors and nurses and insurance companies and billing people.

Stress is an understatement...

Tomorrow is decision day on what our next step will be with Kayla. I'm so nervous and worried that I'm making the wrong decision...but I'm not sure what else to do. I wish this was all black and white and the Dr's would just tell me what the solution is...but they are basically giving me two choices right now.

First, they have decided to hold off on the Nissen Fundoplication as there is still a chance that Kayla could "grow out" of her reflux issues. Since the "fundo" is an irreversable procedure that can have lasting complications (such as never being able to throw up or burp), it is really a last resort surgery that we'd rather not do if we don't have to. I'm very relieved that they took this surgery off the table for now.

Second, we need to start getting Kayla growing. Ideally we would continue feeding her with a bottle, but she's in so much pain from the damage to her esophagus that she is developing a feeding intolerance to the bottle. So my two choices are to either go forward with a gastric tube (GJ) surgery or an NJ tube down her nose. The less intrusive surgery would be the NJ tube down the throat...however, Kayla has become an expert at ripping these tubes out. I'm pretty sure she would have it out within 24 hours if we went this route. That would leave us to have to reinsert the tube every time which is NOT a pleasant experience for Kayla or us. She screams the whole time it's put in and when she does have the tube in, she gets very congested and agitated. So basically, this is not a pleasant option but is the easiest.

Of course, the alternative is a surgery where they put a tube into her belly for us to feed her with while her esophagus heals...the goal would be to let her throat heal and give her body time to grow out of the reflux. If the reflux continues, then we would have to look at the Nissen surgery again. If the reflux resolved, than they would go back and remove the GJ tube. In the meantime, we would continue trying to feed her by bottle so she didn't develop an oral aversion and use the tube only when necessary. From talking to other g-tube moms, they said that this tube is really not that bad and the babies don't even pay attention to it. So from a comfort standpoint, I'm leaning towards the surgery. Oh and they would do the surgery at Texas Children's Hospital.

Her pediatrician and I are going to discuss this in the morning and make the final decision, but I'm pretty much leaning towards the surgery. There is an option to do the NJ tube and then go to the GJ tube if it doesn't work...but I really think it's just delaying the inevitable and the longer we continue putting it off, the longer we are hurting Kayla.

Please say some prayers that we will do the right thing for my baby girl. It's such a hard decision for me...and I'm a Libra...I don't make big decisions very quickly, I want to weigh everything...and I just don't have the luxury of time right now.

Happy Easter!!

I believe it has become my mission to spend all major holidays at the hospital. Christmas and New Years, MLK, Valentine's Day and now Easter have been spent at the hospital. Well, actually, I can't count Easter because I didn't get to go visit Kayla today. I've got some kind of bug and I don't want her to get it (I've already exposed Kamryn so I'm praying she doesn't get it). It was really hard not going up there today to see my precious baby, but her health is so much more important.

I hope that everyone enjoyed their Easter. Kiko, Kamryn and I were pretty lazy and spent the day at home. It was nice though. Not much to report for Kayla. I called this afternoon and it appears she was having a really good day. She finished all her bottles and then some. I don't know what to think about it yet and I hate that I wasn't there to see if she is improving or just having a good day. I plan to talk to her Dr tomorrow morning. Me getting sick was the worst timing because I really needed to spend as much time with her this weekend as possible to make the decision to transfer her.

I will let you all know what we decide as soon as we can.

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 :(.