A long, strange journey for sure...

Wednesday, April 16

I've been doing a lot of reflection the past few days, just really looking back at where we've been and how far we've come, and I've really realized how oblivious I've been through the vast majority of this experience... so I want to do a post of pictures, from the beginning until now. Looking back at the nearly 2000 pictures of this whole experience, especially now that we've finally come out the other side, makes it all really sink in.

Ten months ago, we honestly believed we had a good chance to be home for Christmas. We figured she'd get closed up, we'd wait a couple of weeks, start feeding her, get her breastfeeding, and go home at the short end of the 6-12 weeks we were told to expect. Most of the gastroschisis stories I read were like that, and a lot of the babies were home in just a month or less! I remember when I first started reading Caleigh's story and I actually stopped, because she ended up with short gut and I was like, "Oh, that won't happen to us, so I don't need to read that one." Ironic, huh? Never would I have dreamed that we'd go through any of this...

I think one of the most important things anyone can do is remember where they've come from and keep things in perspective... so without further ado, here are the past 10 months in pictures.

First born, nurses trying to stop the bleeding from her ruptured cord

First day with the silo

Last day with the silo

All closed up!

First time being held, 8 days old

First sponge bath, 9 days old

All swollen, and no one knew why...

Faith's first Thanksgiving, chest tubes and a PICC line were her gifts

(and we didn't get to hold her for 2 weeks!)

Skimming breastmilk... I spent probably 4-6 hours a day doing this!

The first few batches of skim milk I took to get tested for fat content

Extubated the day after she turned 1 month old

The first time we ever saw her face without anything on it!

First time wearing clothes, the shirt was preemie-sized

First time doing kangaroo care

First time in a crib, all decked out for her :)

Already looking yellow, barely a month old her direct bili was already over 3...

First tub bath! No one told us anything about not getting her line wet... and this was when all she had over her insertion site was a band-aid!

We decorated her room for her first Christmas

I was so glad her chest tubes came out in time for her to wear her Christmas dress! The bib was mine when I was a baby.

First time in the sling

Getting one of her first oral feeds... I think there were maybe 3 ml of milk in that syringe!

Right after her first time breastfeeding, at 2 months old!

Her first time being "cordless". It felt so weird to be able to hold her in the middle of the room!

Her first time in her carseat, doing the test the first time we were supposed to go home back in January. (Notice how orange she is- this was maybe 2 days before the labs when her direct bili was 11.8)I think this is the night they drew the 11.8 DB labs...

First time wearing a cloth diaper

Valentine's Day

Her awesome NICU friends made her a pretty sign for her door when she turned 4 months old

Post-op after getting her g-tube

Getting ready to go home for the first time!

First time in the car... she didn't like it much!

First time in her own bed

At the airport, waiting for our flight to Boston

All of our stuff we took to Boston...

Admitted in Boston

Her first Omegaven!

A visit from the clown doctors

Pink feet!

With the crazy manometry tube in her nose... it reminded me of an octopus or something

Flat lines... not what it's supposed to look like...

We went all over Boston in the stroller. I had to put a sign on it that said "Please don't touch me! I am just as cute from a distance!"

Her "after" picture. This is the week her direct bili hit 2.0, after 30 days on Omegaven.

First time trying to eat solids... she didn't think it was a good idea.

At the aquarium. This is the tank of menhaden, the fish they make Omegaven from.

Faith and Daddy, and the Prudential Center after we went up to the top

Faith and Mommy with the mama duck at the Public Garden

All of us with Ben Franklin at Fanheuil Hall

Faith and Daddy by the Mayflower replica in Plymouth

All of us as shadows at the Pilgrim Memorial Park

Faith practicing sitting in her bumbo-type chair at home

With Daddy and Noah the night before Daddy left

Passed out post-op after her scar revision in July

Hanging out at Boston Common this trip... totally TPN free, and sitting up unsupported!

Pre-op waiting to get her line taken out

Pushing up on her hands on the bed in our room at DNH!

Eating! Munching on a strip of dried banana and some fruit puree and actually LIKING it!

Faith has come SO FAR in the past 10 months... Like I said above, I would never have imagined that we'd go through all of this, but honestly, I'm glad we have. I have learned more, and met more wonderful people, than I ever expected to in my entire life. As hard as it's been, I am so thankful that we've been blessed to have had this experience!!