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!!