Wednesday, July 18, 2012

NICU day #17

A couple of years ago when I was still very bitter and angry about my infertility, I used to roll my eyes when people said that having a kid in the NICU is hard. I know. I'm a horrible person. But all I could think was, "Maybe, but it's better than not having a kid at all."

Which is true. I can vouch for that now that I've experienced it. But it's still difficult. Frustrating. Exhausting. There are great days, and then there are terrible days. Days when I feel completely inadequate as a parent because I can't comfort my child. Days when I feel frustrated because I have to ASK for my child's status updates instead of being told.

Baby K is only allowed to wake up eight times a day for her feedings, medication, and diaper change. Which means that we can basically only hold her eight times a day. If she wakes up, it counts against her in her evaluation to go home. If she gets too fussy, it counts against her. Things that people are able to do with their newborns, I'm not. We get no playtime. No time to be awake with each other.

I know that everything the doctors and nurses do is for her own good. It's so that she can get better and come home soon. But it doesn't mean I don't wish things were easier.

Hopefully those easier days are right around the corner. The doctor said today that if she continues to improve at the rate she's going now, she will likely be discharged in 10 to 14 days - a huge upgrade from the original six-week time frame presented to us. Of course, it's all based on how well she does each day. It's hard to look too far into the future.

As hard as it's been here in the NICU, I can't complain for a second about the level of support we're getting from family, friends, and the hospital. Whether it's gift cards to restaurants, care packages sent to our room, donations for K's medical expenses, or just visits, the love we've received is overwhelming.

And at the rate she's improving, I think K's feeling that love, too.

20 comments:

KRISTI said...

I've visited you twice and I can't imagine having a baby who I can't hold and snuggle with (which is just what she needs---fyi ;) )

You are soooo strong and I can't wait until you get home with your baby girl and can love whenever you want!!

Hugs!!

Casey said...

Having a baby in the NICU is so hard, especially so after infertility. Sending all of you love and light, especially baby k. It was 48 hours before I could hold my little one, and then I could only hold her for mere minutes at a time for days. It all is so overwhelming. Although I am still traumatized by it all, I look at my healthy thriving four year old and am so incredibly grateful. I hope every day gets a little better, and your victories, though seemingly small come in abundance. Please know your in my thoughts and prayers.

lparsons15 said...

Her strides are incredible! I hope she kicks a little more ass every day!! I can't imagine how difficult it must be and you guys are doing great! Keep your eye on the prize, getting that sweet baby home!!!!

Amber said...

That is fantastic news about the rate at which she's recovering! And that you guys have the support that you do.

Even though this is a rough beginning, have no doubt that Baby K *knows* how much her mommy and daddy love her! Whether she's awake 8x a day or 80.

I cannot imagine the bittersweetness that there is to all of this: your miracle child making you parents after such a long journey... but having to wait for another couple of weeks while she gets better. But I can tell you that when you do bring her home... it will be better than anything you guys could have hoped for. And that sense of awe and wonderment that that little girl is *yours*? It doesn't ever really wear off :).

Hugs to you all!

AnotherDreamer said...

I'm so glad she's doing well. I can only imagine how hard it is. Continuing the positive thoughts!

Shannon said...

So happy to read she is improving ahead of schedule! I am praying for you all. I hope she continues on this path to going home with her loving parents.

It Is What It Is said...

I know the NICU can be grueling and I know having a child to pull for, to will to strength and health is its own blessing.

Glad she is improving. I've never heard of the 'can't wake up more than 8 times or it works against' rule, but that would be WAY frustrating.

One day at a time and she WILL be home :)

Shannon said...

Thanks for your wonderful honesty! I wish all of the best and keep your head up because baby K is lucky to have you!!

Autumn Jones said...

Don't be so hard on yourself! I'm still in the bitter/angry stage. I know what it's like to count pregnant women at Walmart and think- really???!!! But you are truly an inspiration!

M said...

((hugs))

Dawn said...

Awesome news. I hope things keep heading in the right direction and you are home snuggling K in no time!

Rach said...

I cant imagine how tough this is. I hope the improvements continue and you get to take your baby girl home in the 10-14 days. Or sooner!

someday-soon said...

Some things are just not at all in perspective until you live them. I hope little K continues to knock the doctors socks off and is indeed discharged in 10-14 days =)

Beth F. said...

I have been reading for a while but never commented. I just want to let you know that I feel (some) of your pain. My baby was born on 6/20. c We were incredibly lucky that she only had to spend 6 days in the NICU (we thought it would be longer) but it was still unexpected because she was not premature. We had good days and bad days. The estimates of when she would go home constantly changed. I was also frustrated by my inability to comfort her/holder/interact with her and to not have the "normal" newborn experience. It all worked out---she has now been home 3 weeks, is healthy, and we are getting to know each other and make up for lost time. Please know that I am thinking of you and K.

nobabyruth said...

I'm sorry that it's so hard. I honestly cannot even imagine having your newborn daughter in the hospital and not being able to hold her, etc. But remember that lives are long and you will have a whole lifetime with that sweet girl!

Emily said...

Wow, I'm so pleased to hear that Baby K is doing better than expected! I hope she is able to go home in 10-14 days, that would be wonderful!
Hang in there, I know it must be difficult and very frustrating at times, but soon you'll have your beautiful little girl at home with you and all of your struggles will have been worth it! :)

rebecca said...

I remember how impossibly hard those NICU days were at times (our son was in the NICU for 5 1/2wks). Sometimes each day was such a roller coaster, starting out awesome then ending with a terrifying change in his status. Try to celebrate each positive report and know that in the hard moments things will get better and that you're doing all you can to be there for her. And yes it is frustrating that there are things you don't get to experience with them when their start in this world is so difficult, but there will be better days ahead for you guys in the future. And she'll just need you that much more once she does come home. Thinking of you guys and hoping that little baby K continues to improve and is soon able to join you at home. Sending hope that you are strengthened with continued support and love from everyone around you.

mjhwall said...

Katie, the NICU can be so tough, but you are doing an awesome job showing K the love, even on the days when you feel like you're not doing enough. It is so heartwarming to see her progress and to see you blossom as a mother. xoxox

Logical Libby said...

I am just catching up on your blog and your beautiful little girl. I hope she is home safely and you are adjusting to parenthood...

Jen Rutner said...

I can only imagine how hard it is, and I'm so glad you're sharing this story. I feel like you're helping me prepare for what might be our story as well. My fingers are crossed for her health and improvement. I cannot wait for you to make up all the snuggles and cuddles and tickles and laughs that you've been waiting for!!!!