Here is Charlie and Kayla, their first pic together and Charlie is talking to Kayla- and she is listening very intently! :) It's a little blurry because Charlie was being bounced... but how cute are they! Kayla is in her car seat for the "car seat test" Apparently since she had respiratory problems she had to sit in the seat for .5 hours and she passed with flying colors. :)

Well yesterday was our day out of the hospital. I didn't think it would be as soon as it was, but nonetheless I am super stoked to be home with my little girl. Stressed beyond belief, sure, but I know my husband and I can do this. We are so ready... stressed, but ready. We weren't exactly prepared to bring home a baby but if the Dr. says I can go, I'm going! :) We had everything we needed for the night and I must say it was a successful night! Kayla slept ALL night... I even went 5.5 hours w/o feeding her- don't tell the hospital!! I am only supposed to go 3-4.... but she was peaceful and when I finally did wake her up to eat, she puked! ARG! But since that 4 a.m. feeding, she has taken a full 80 mL and kept them all down, thank god because the lady is coming over today to weigh her! She loved her new surroundings. She was not happy about going to bed, but when she did, she passed out! Her Grandma went to Walmart this morning and bought her a tub thing, and some new bottles, one that has the soothie nipple from the hospital so she loves that when eating.. :) I am not so happy about the formula- I have to mix it because she is on the 24 cal. enfamil... and I guess it's hard to find at stores... Anyway- she is home, and happy, as are her rents! :)

These are a few pics of the day she left. The Yankee one and mirror pic were the day before- just thought they were cute! :) She is happy camper in the car in her car seat here. She slept the entire car ride home...the second we got into the parking lot, she started crying- she was hungry!

My little darling knows what she wants and knows exactly how to get when she wants it. However, being at the hospital still she is not able to get what she wants when she wants and that makes her sooo very angry. I need to get a picture of her throwing a fit so all these "Little Angel" pictures don't mislead you! :) She is doing well. She is off her fentanyl- again, and doing better without than she did the first two times. She is a little cranky for sure, but I'm assuming the drs are confident because they took her PICC line out today!!! YIKES!! She is line free- all except her monitor lines- heart rate and respiratory rate- She is eating her 60 cc TODAY- who knows what she'll do tomorrow, but to me she seems hungry still after eating the 60- maybe they will up her seeing how they say she needs to be eating 90 cc! (3oz)

Yesterday was a very frustrating day for me- it was frustrating bc Kayla was having a bad eating day, and she was sleeping a lot- made me worry! But then I felt guilty for feeling frustrated because I am so blessed... and I just couldn't stop crying bc of the frustration I felt and bc of the guilt I felt for being so frustrated- it was a never ending cycle! So I left Kayla at 3 yesterday and drove home for the night. It was nice- my husband and some wine calmed me down quite a bit. But before I left- I was talking to some mom's at the hospital - one being Charlie's mom- and I wanted to thank them for listening to me whine and cry about my frustration and for not judging me for feeling that way.

I would like to offer my condonlences to baby Kaden and his family. I'm so sorry for their loss, my thoughts and prayers go out to you. I have to say in times like this- I thank god for what I have been blessed with - and if it seems I have done nothing but complain about Kayla still in the hospital - I really try hard not to. I am very lucky for what god has blessed me with and I could not ask for more! I have a beautiful new daughter who makes progress everyday, and new friends in the NICU - Baby C's parents and Baby J's parents- and all the great nurses in the NICU, I am very blessed! As for Kayla- she is super cute! :) I keep forgetting my camera at the NICU so as soon as I remember it I can post more pictures. I am having a hard time catching her smile on camera because I rarely have the hands to grab the camera and play with my daughter at the same time- I am trying tho- and it seems when she is in her crib- I will play with her- and she'll smile- but I don't have the camera in the right spot and she stares hard core at the camera and won't smile when it is on her- just as soon as I pull it away.... little stinker! However, she smiles all the time. Don't get me wrong she also throws a fit when she is not happy with something. She knows what she wants- and she knows exactly how to get it. She absolutely loves her swing, and her vistors... I have heard she loves Jan- one of the nurse practioners! I don't know what I'll do when I get her home and she won't have all the nurses to talk to. She is now up to 60 cc and she is OFF her hyperal and lipids. Sometimes when it is feeding time - and she isn't completely starving- she will let me put the nipple in her mouth, and then looks at me and smiles the biggest smile... she is so cute but the nurses tell me not to play with her then, it's business time, not play time. It's soooooo hard- but she has to eat! :) She is still at the .6 fentanyl- which is frustrating but she'll get there- eventually! I also want to say I'm super proud of Charlie- He is doing better with feeding and making his mommy happy with a little bit of breast feeding!! :) I know Kayla is missing her bf! :) I also want to thank Baby C's parents for being there for me- my husband is gone thru-out the week due to work, and I am pretty lonely- they keep me company quite often which I appreciate so much. I'm not sure what I would do without them... they have been there for me from the start- so thanks guys! You are amazing!

So I made my every morning call this morning and was highly disappointed again! Every day seems to bring Kayla a new nurse- she is to the point- especially being weened of fentanyl- that she needs some familiar faces, some faces who know how Kayla acts and how Kayla eats.. Well my nurse this A.M. - I don't know who she is - I have heard the name- and am thinking she had Kayla once- when Kayla was not taken off her fentanyl. Anyway this nurse proceeds to tell me that Kayla did not have a good night. (First time I have been told this in a long time) The reason she did not have a good night was because she slept all night long, except when she was woken up at 4 a.m. to do her every three hour feeding and she did not want to be awake. So Kayla threw a fit and vomited out all her feeding. This is what is so frustrating to me- a normal baby sleeping thru the night would thrill everyone- but if my baby does- it's not good... hmmm!!!!! A nurse practioner did say that if Kayla was asleep do not wake her in the night - if she wakes up- feed her. That sounds like a plan to me- but we'll see if they really do it. On a more positive note- Kayla was reduced to half of what it was on her fentanyl... It was .6 so I'm thinking half of that will be .3- but before it was a 2 and half of that was .6....??? I'm not real good at understanding this fentanyl stuff- :) But this is a good thing- she needs to get off her drugs- she can't go home with a fentanyl drip! But I am very nervous with this weening- she is pretty grumpy and makes her feedings not go as well as they can. She is also up to 42 mL of formula. My husband and I continue to pray for Baby Kaden everyday- as well as all the other CDH babies out there- we are trying our hardest to get the word out there about CDH- for awareness day my co-worker (I love her) put an article in two newspapers- however I am from a SMALL area- but it is all worth it! :) Kayla does miss the company of Baby C and his parents tho!!

So the day after they took Kayla off the fentanyl they put her back on it- she was soo agitated- and Dr. R was baffled that they were using morphine to help her- because it wasn't- so they put her back on a less concentrated fentanyl- and have yet to ween her from that one. So frustrating. She is doing much better tho- she is eating her 35 cc's easily and that means she is getting closer to getting OFF the hyperal and the lipids, closer to getting her PICC line out! :) I was talking to Dr. B today about Kayla going home, not that she is any time soon, just had a few questions about what to do when she got home. I was told no visitors- no co-workers, and especially no kids! I was told basically only grandparents- Dr. B said that if Kayla catches a cold it could be fatal- I have watched my nieces and nephews for a while now and they seem to be sick quite a bit... how do you keep a baby from getting sick? I'm so stressed with this bit of info- for some reason I thought once we were home, we were ok. Now I'm real nervous and not quite sure I ever want to leave the hospital!

Today Kayla was taken completely off her fentanyl... YIKES!! I thought we had 8 more days on that stuff and today Dr. B decided to swipe her of that. She was fine until around 1:30-2:00 ... then she started breathing weird and shaking. I was not happy- then I heard news that Kayla was moving to E nursery... a less intensive nursery. I just got comfortable in the D nursery and they are booting us out already!! When I left Kayla - she was not better, she was much worse. She puked a lot of her feeding and I had a hard time calming her... her heart rate was 212-220ish.. not good. Her nurse said that staying in that range for a longer period is not good so she got Kayla some morphine. I don't believe it is helping her. She still shakes and sweats- it's awful! I left her after rocking her to sleep - it took an hour - she was asleep and I got her quietly into her crib. However I am nervous now... she needs some constant care right now and I'm afraid she isn't going to get it - AND they give her a bath tonight- she hates those! Today was a stressful day - Also the move- we are no longer next to our helpful parents of baby C- who keep me calm at times and help me to not stress so much - as I do when I'm alone! I believe they will move close to us soon, but it would have been nice to be in a comfortable place during Kayla's withdrawl... My love and prayers go out to all - hang in there- I've been told it gets better! I know it's easier said than done...

Well being 39 days into our journey I (Baby K's Mom) is finally getting on the ball and starting her blog. Today was Easter - first thing I noticed this morning at the hospital was a purple easter basket and a card- Baby C's- :) parents had left Kayla an easter basket and the cutest pic of Baby C! That will go into her baby book for sure! :) Kayla was all cute in her easter outfit! Even Baby C said so! I heard him!!

So I am so far behind in doing this blog thing- So I need to catch you up- Kayla was born on the 4th of March. She went about 2 and a half days on the conventional vent, and then had a set back and was put on the oscillator, and then nitric. She was on nitric for 11 days- and on the 13th day she had surgery. Her surgery went well- however her abdomen- the muscle- was too tight to stitch together so the surgeon put a patch in her abdomen. She had her second surgery a week and three days later ... was taken off the vent three days later. She was put on vapo-therm for one day- and then completely free of any tubes in the face. :) She started feeding at 3cc's and is now up to 24cc's. Kayla is doing great- she is now at 24 mL's of formula. She takes the nipple very well. However tonight, she decided she was sooo hungry that she was going to cry cry cry... even when the bottle was in her mouth- the nurse said that Kayla got so upset that she didn't even realize the nipple was in her mouth. Finally when she figured it out- she chugged her milk right down. She did have a little spit up today - but the nurse said it wasn't a lot.. phew! Kayla is also down on her fentynl - she is at 2 (whatever it is measured in)- and goes down .5 every other day. In 8 days she should be done with fentynl. Yay!!