Friday, March 13, 2009

Settling In

Thank you, Lynda (aka MomBaum):

Thank you, Diane (aka Grammy):

Well, both grandmas have come and gone and now we're on our own . . . can we make it? I think so (I hope so). I've outlined some funny, some serious glimpses of our home life:

The Good:
  • The oxygen and apnea monitor aren't as bad as I thought. Afterall, holding the baby in one hand, hanging the apnea monitor on my shoulder, and doing dishes with the other hand kind of makes me feel like this:
  • Privacy at last--I can sing to my little one at the top of my lungs and not feel like my five NICU neighbors could jump in and harmonize if they wanted to.
  • Occasional days to paint, which is a much welcomed oasis of rejuvenation (new and improved images coming to my website soon!)
  • 2-5 medical appointments/wk means lots of reassurance that Brynn is gaining weight, staying healthy, and developing as normally as can be expected
  • No two year old running around making this even more difficult (I don't even want to imagine . . . )
  • Funny pictures of a baby that has no desire to be photogenic:(okay, she can be cute, too)
The Bad:
  • GERD (reflux). After the arching, coughing, gagging, wheezing, and refusing to eat, there's the puke. This is no ordinary puke. I feel extra sorry for Brynn when it comes out her nose, and into the oxygen cannula.
  • Dishes from pumping, dishes from bottle feeding, dishes from tube feeding . . . plus each feeding takes an average of 45 minutes (up to hour and a half). Now you tell me, when am I supposed to sleep? When the baby is sleeping? Ha. That's the time I have to spend doing the dishes for the next feeding.
  • Brynn's taking very little food orally due to GERD, poor suck reflex, and an inability to control the liquids once it's in her mouth. She's heading downhill pretty fast and will likely require a G-tube.
  • Laundry, laundry, and more laundry.
  • Did I mention dishes?
The Ugly:
  • 40+ calls to five different companies, and NO ONE can send me NG supplies that will work for Brynn. In two weeks she'll have outgrown her current NG. All the "single use" items I've been carefully washing and re-washing will be obsolete--even if I CAN manage to make them all last until then. Apparently it's so rare for preemies to leave the NICU still on an NG that no one knows how to handle it. What to do? I have NO IDEA . . .
  • Learning to eat while holding a baby can be a trick!
The Reward:
  • Overwhelming feelings of love for my baby girl.
  • A surprise gift of patience today, straight from Heaven itself, especially since I'm so low on sleep and Brynn is screaming from her immunization shots. I still haven't done the dishes.
  • Sweet moments of inspiration--if Brynn can live in the moment, sleeping peacefully just seconds after she's just coughed her lungs inside out--then I can do it, too. No wonder God says to be like little children. She never thinks of the past or worries about the future.
  • A split second where I SWEAR Brynn met my gaze and smiled at me.
  • Strength that seems to come from nowhere that somehow makes me fit for this particularly difficult task.
What a difficult, taxing, yet wonderful journey.
Natalie

9 comments:

alatarielsunrise said...

Wow! You really a SuperMom, Natalie! :) I love reading your blog, and little Brynn is so cute!

~Dawn Edelen~

Tiffany said...

Congrats on getting her home and somewhat into a routine...dishes being left for some dish fairy sounds about as routine as it gets with any new baby!!! Can't understand your frustrations with all medical issues, but I'll try to feel your pain right along with you! And you're right having a two year old...be thankful you don't!!! It's soo much harder than anyone tells you, I think if they did we'd never have children! Bless you all, and may each day look brighter, stronger and more amazing than the day before.

Anonymous said...

Awesome post, thanks for sharing.
Love the picture with the food on
Brynn's head. I miss you guys.
Audrey

Keeley said...

Nate says you should have a social worker. They could help you get the supplies you need. Did you have one when she was still in the NICU? I hope that helps. If not maybe you could beg the hodpital for some help? We are praying for you as always. I love reading your blog it really helps me get through my life as well. Keep up the good work! We love you guys!!!

Keeley and Family

josette berg said...

hey girl, You are doing an awesome job. Is there any way you can get nursing care for a couple hours a day. The state even told me today that there is a program that will teach a family member or friend how to take care of them and they will pay that person for time worked. In the state of kansas there is a TA waiver that you would qualify for if she had a feeding tube, it pays for nursing doctors, meds,and supplies. Brynn is so cute and no worries if by chance she does need a mic-key feeding tube, it is small and you can still dress her up very girly and no one will be the wiser. Mathias healed from his very well and besides the MRSA blood infection and bladder infection he would be doing great. E-mail me if you have any questions.
Good luck and thanks for the updates. I will keep you all in my prayers

Monique said...

Wow.

So my initial reaction was, no, not a G-tube! That's accepting defeat! But as far as surgeries go, this is a very simple thing using endoscopy. AND oral intake can still be addressed as the ultimate goal.

Is Brynn still getting speech therapy? I think that's going to be key to work on her swallow.

Danyelle Ferguson said...

I'm so glad Brynn is home!!! Yeah! And yeah, wonder woman has nothing on us multi-tasking wondermoms. :)

Anonymous said...

Congrats Natalie! I think of you and little Brynn often. It's amazing how big she is getting. So glad to hear that you have her at home now.

Little M and Baby G said...

I'm so glad that little Brynn is home! Greyson and I have been home for almost 2 months and let me tell you - the dishes still pile up, we still don't sleep much and pumping is even more of a pain than it was in the NICU. But to be able to snuggle your baby anytime you want - makes everything better.

My suggestion for the dishes - get another set or 2 of the pumping bottles and accessories, then wash all of them at once. That way you don't have to wash every time. When we did that I was kicking myself for not doing it sooner. Same with bottles - we bought enough to get us through the whole day and then just wash them all when we do the dinner dishes.

Your family is just beautiful!
-Greyson's Mom