i'm afraid to fall asleep

Is this a rational though? NO, but it is what i think/feel.
Avery is sick, she is congested and sounds terrible. She sounds like she is losing her voice, her poor little cry sounds like a wounded kitten. That said, I really am afraid to fall asleep. I feel like if i fall asleep something is going to happen and Avery is going to stop breathing. I can't stop myself from thinking that, so I can't sleep. So here I sit, typing my blog and watching my daughter sleep in my lap so that I can make sure she is breathing.
Sigh, somedays i really miss being completely oblivious of how bad things really can be.

ahhhhhhhhhhhh

I just needed to get that out. I knew having 2 kids was going to be hard (especially after what we went through to bring her home), but man I didn't think it was going to be this hard. Both girls are sick, and after a trip and a few hours spent in the ER we found out Avery is RSV negative (YAYYYYY) but we had to take her to the pedi today to follow up with her breathing. Avery's pediatrition is out of town until monday so we had to see a different doctor, and ended up needing a nebulizer and breathing treatments for her. We have to do her treatments every 3hrs.
   When i called Avery's doctor's office and they gave me the number and name of the doctor we needed to see today my heart sank. I knew Avery needed to be seen but I REALLY did not want to go to this doctor. She is really kind and everyone i know that goes there really likes her. My problem is, she was the on call pediatrition the night McKenzie was born, she is the doctor that worked on my baby for 30mins trying to get her to breathe, she is the doctor that called my daughter's time of death, she is the doctor that came out to tell my husband and MIL that my daughter died. Sigh, out of all the times to bring up those emotions it had to be when my tiny little preemie is really sick.
   Anyway, Chloe is having a VERY hard time right now. She herself is sick and wants extra mommy time, but Avery NEEDS me to take care of her, feed her, and do her breathing treatments. It is so hard to split my mommy time between the girls. Avery is not feeling well so she wants nothing but to be held so I spend a lot of time doing things one handed so that I can hold her too (kind of like writing this blog).
   I am sleeping in 1-1.5hr stretches right now. Between diaper change, bottle, nebulizer, burping and getting her back situated like she needs every 3hrs it leaves very little time for sleep.

 I am so tired, but honestly couldn't imagine my family any other way!

wordless wednesday

worlds best husband?

Yep, I have him!
Every night at midnight I feed Avery her last feed for the day and either right before or right after I feed her, I make all of her bottles up for the next day. Since she needs to eat AT LEAST every 3hrs this is the easiest and least time consuming way to do it. Lord knows I don't want a screaming baby while she waits for me to make her bottle at every feed. Anyway, for the last 3 nights in a row Phillip has surprised me by having all her bottles for the next day made already by the time I get out to the kitchen to do it. It seems so simple, but it saves me a good 20mins of washing, drying and making bottles. I do all of Avery's feeds because right now it is critical for her to eat good and get the proper amount of formula and she just simply eats better for me. So this simply act of making up bottles is Phillip's way of helping out with feeds, and let me tell you it really helps more than i could possibly explain.

So I sit here in my bed next to my amazing husband, watching my infant sleep in her swing, knowing my toddler is sound asleep in her bed I know that my life is complete. I am blissfully happy and complete with my husband and 3 girls.

i wanted to share

Tonight I was going through my phone deleting old text/picture messages and i came across one that was sent to me from a friend in response to me sending her a picture of the first time Phillip held Avery. It instantly brought tears to my eyes and wanted to share it, so to the person that sent it to me THANK-YOU. I read it at the time and it means just as much to me today as it did then and i really needed to read it today!

" :) ECSTATIC! Avery is getting bigger each day! I can see the changes from last week. And no doubt she's a fighter. Though tiny she seems to be on a mission to amaze everyone with how strong she is. You were thrown another curveball with Avery being such a preemie. You have handled everything with such grace, courage, and strength. You are a fantastic mother and role model for your girls. I love reading your updates each night. A reminder that good things do happen in the world. :) Bada"

You are an amazing friend and one of the sweetest people I know, thank-you for being there for us!

Avery's coming home and then some

The last time i blogged was the 14th and I had spent the ENTIRE day at the NICU making sure that Avery would take her feeds, and she did. When I came home I felt really good about how she was doing and knew that Lloyd (her nurse) would be able to get her to take her feeds. The next morning, Saturday the 15th, I was supposed to get up and spend the entire day at the NICU again but a combination of being exhausted and having a headache I decided to sleep in. When we got up for the day I called the NICU to check on how Avery's feedings only to find out she didn't take her full feed the first time so she needed to be gavaged! WHAT?!?! After all that work we were starting over! UGH, so we got ready and Phillip dropped me off at the NICU for the day so I could work on her feeds again. When Phillip came back to visit Avery Saturday night I informed him that i would NOT be going home, I was going to pull an all nighter with her because I knew in my heart Avery was ready but she just needed me to be there.
    So I stayed up all night at the NICU Saturday night, even though countless nurses tried to get me to go home, and Avery once again took EVERY SINGLE FEED from me. In that moment I decided i wasn't going to leave the NICU without Avery because i KNEW she was ready to come home. So I stayed again all day Sunday, with no sleep, feeding and cuddling Avery and proving to everyone that her time in the NICU was coming to an end. Sunday was tiring and hard for me watching other babies discharge and i was running on no sleep (but it was worth it). Phillip came to visit on Sunday and we had dinner together but I made sure that I was back in that NICU in time for every feed. I had a couple of nurses tell me that they were proud and impressed with my dedication to my girls. I did end up getting a 1.5hr nap in the car Sunday night before Phillip went home, I really think that was just what i needed to keep going. On Sunday when they wrote new orders for Avery, they wrote to completely discontinue gavage feedings because the charge nurse saw how well she was doing with her feeds and in her words "we don't want anyone to "accidentally" muck up our plans of getting her home".
    By the time Monday morning rolled around I had pretty much every day shift nurse agreeing with me that Avery was ready to discharge, we just needed her neonatologist to agree and write the discharge orders when he made rounds. When Dr. Y (her neo) made rounds that morning he walked in to room 2, saw me and said uh oh because he knew something was up. When he got to Avery's dictations and writing orders, we talked (and some of the nurses in the room helped me). I told him that in the 3days i had been feeding her she took all her feeds, he noticed the 1 gavage feed and commented on it when Sandy (nurse practitioner) chimed in and said :"that is only because that is the 1 feeding mom was not here for". Dr. Y joked around and told me he was going to put her discharge up to a vote (little did he know that EVERY nurse in the room was on my side). After dragging me along for about 10mins and messing with me, he held up her form for new orders and in big letters it said "DISCHARGE". HOLY SHIT it was real, we were going home!!!!!!
    I ran out to the waiting room and called Phillip, telling him to get Chloe ready A.S.A.P and head to the hospital because we were FINALLY bringing our baby girl home after 86days in the NICU. We were able to bring her home the day before her due date!!! When Chloe first saw Avery she didn't know what the car seat was or what to think. I lifted her up and asked her "are we bringing baby sister home now?" Chloe said "YES, can i kiss her now?!". It was a nice ride just the 4 of us and I had many tears, a combo of being completely exhausted and totally overwhelmed with finally being able to bring Avery home. We didn't tell anyone that we were discharging and I wouldn't have it any other way.
    Since coming home there has been a HUGE adjustment period for both girls. Chloe is acting out and not really sure how to deal with her emotions, although she is AMAZING, caring and a great big sister to Avery. She just is having a hard time with the reality that Avery need a lot of attention and care, and mommy needs to provide 99% of that for Avery (plus not seeing me for 2days before that). Avery had an adjustment period too, home is a LOT different that being in the NICU. We seem to finally be settling in here with both girls, and I can't wait until it is a little warmer to take them both to visit McKenzie. Honestly I think the hardest part for me is having to drop everything i am doing to feed Avery every 3hrs.
    Avery has some appts coming up like her first post-nicu weigh in at the pedi on Monday and her follow up eye exam on Tuesday. In 6months she will have her high risk follow up with the NICU to make she she is growing, developing and thriving.

Avery's feeding update

so here is the update. I spent the entire day at the nicu to focus on Avery. She has taken all of her feeds (the full 60mL) since her 8pm feed LAST NIGHT. She is also taking her feeds in the 30min time frame. At a couple of the feeds she even took more than 60. At her 8pm feed tonight she took 70mL (almost 2.5oz) and it only took her 35mins. Cross your fingers that she feeds well the rest of the night and has GOOD weight gain when they make rounds tomorrow!
Avery is now 7lbs even and 18in long! Today was day 83, tomorrow she will be 12 weeks old!!

bad blogger, bad bad blogger

I have really been slacking in the NICU and life updates on the blog, mainly because there is no change and therefore nothing to update.  I kind of took a break from life, blogging and pretty much everything else for a few days and did nothing but cry. This last set back (for eating) in the NICU really had me feeling defeated. But now i picked myself back up and i am ready to do this!
Avery is still in the NICU, today was day 81. Her due date is a mere 6days away and we don't really have any signs of her coming home. Although today was a really up day, she took all of her feedings by mouth, which is definitely a step in the right direction. Tomorrow i will be spending the day at the hospital so that i can try and get her to take all her feeds again lets hope this works and we can get baby girl home sometime soon.
Avery's "nicu boyfriend" as i call him, her very first neighbor in the NICU. He is a 25weeker and i have posted about him before (baby boy S). Anyway, he is being discharged on Friday!!!!!! I am so beyond excited for his family but am really going to miss him. He has certainly come a long way from when i first saw him on the vent!
Avery is currently 6lbs 15oz, still wearing preemie clothes but has now outgrown the preemie sleepers. She is 17in long and so amazing. I cannot wait for my girls to meet for the first time!
Chloe is doing pretty good, working on potty training and just being her almost 3yr old self. She is too smart for her own good and she just amazes me everyday. I really love being a mommy to my girls.

my goal this year (for march of dimes)

So I have decided to take a bit of a NICU blogging break because i just really need to gather my thoughts, pick myself back up after this last slap back to reality and get back to a good place which i am not right now.

Anyway, this year the march of dimes march for babies means even more to me because without them, all the work/fundraising they have done for premature births my little Avery-boo would not be here. She is fighting since day 1 and that is made possible thanks to the march of dimes. So this year i would like to raise a large amount of money for them, i know every penny counts, but i want to do something big. So I am asking you, anyone reading this, if you can sponsor me and help me by making a small donation. I am walking this year in memory of my beautiful McKenzie Lee (still born at 32w 6d) and in honor of my little fighter Avery June (born at 27w 4d). I would love for the word to get out and as many people to read this as possible because the more people that read, the more chance i have of reaching (and hopefully exceeding) my March for Babies goal this year.
so please pass this along and remember every penny counts!
thanks to everyone!!!!

NICU, day 72

Avery is now 6lbs 7.8oz and 17in long. She is getting so big, i am just beyond amazed at her. She is completely formula fed and doing really good with it. They are doing what they call "tough love" on her and basically forcing her to take feeds by mouth simply by removing her NG tube and not tube feeding her at all. She is doing pretty good at taking her mouth feeds and takes about 40mL at every feed. She no longer has a pulse ox on either and she keeps her o2 levels up. Hoping to have her home before her due date in 15days!

March for Babies

This year I am once again walking in the march of dimes March for Babies. This year is a little different for me since i am not only going to be walking in memory of McKenzie (born still at 32w 6d) but in honor of Avery (born at 27w 4d). I am the mom of a preemie fighting in the NICU for 70days (as of today). For the last 10weeks we have been in the NICU. The march of dimes helps to raise money for preemie babies in hopes that someday all babies will be born healthy (and full term). Please help me honor my girls by sponsoring me in my walk and donating to a great cause!