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!!