Day 15 2.0 pounds

   Today has held many feelings.
Grandma Ann left us to continue with her travels. She flew in 2 weeks ago to help me while I was getting transferred from hospital to my one bedroom apartment which was provided from our insurance company. She helped where she could and got to see and spend time with Grace. Goodbye Grandma Ann.
 Gracie had a very hard night with desats, extreme Brady's, low blood pressure and low oxygen levels. Her heart is working way too hard. The meds haven't been working to close up her PDA vessel. She had her second Echo-cardiogram this morning. It came back with nothing changed in her heart. Two doctors sat down with me and discussed what Grace needed. Heart surgery, tomorrow morning at 7:30 a.m. Even though I know she needed the surgery, uncertainty has started to settle in.
   Time started to fly by as March Of Dimes came by to do a photo shoot with little Gracie and I. It was such a beautiful thing. They posed Gracie in my hands and took fantastic pictures. They do these photo shoots free of charge just to capture this stage of life for Gracie. They did it in between CPAP change-over so she didn't have anything on her face. It'll take about 4 weeks to get the photos back.
   She dropped back down to her true weight. All the fluid has left her body after the Endocin meds were stopped. She'll be going back up in weight as they are going to be pumping in the fluids for surgery. I just went up for touch time and they are giving her another blood transfusion to get her counts up to 40. They will also have extra blood at surgery if she happens to need it. They have her warming bed ready for the surgery. She'll be going on the respirator/ventilator in the middle of the night and will stay on it for a couple of days after surgery. Her fluids are changing to just IV fluid, no more total nutrition until after a day or so after surgery. She'll be switching back to the large Giraffe incubator tonight. Darn, she just graduated from that one 1 1/2 days ago. She has definitely had a huge setback.
  Grace's big sister, Meghan, stayed behind when the family left so she could help me out. Since I'm still trying to heal...she is doing everything to help me out.
  PLEASE PRAY for Gracie! She really needs prayer NOW!! Thank you!
I'll add photos after we get back to my apartment.

Day 14 Family & Daddy visits with Gracie

My family was able to finally come up to visit after 1 1/2 weeks on Friday! What a very long time to be without my little chickies and rooster! :) After 3 1/2 hours of driving...they arrived!

Here they come!!

Meghan and Joseph riding on the luggage
cart with daddy pushing.

It was such a great sight to see them walking down the hall by my apartment. I just love all the hugs and kisses and "I missed mommy soooo much" statements. Ugh, I love them so much it hurts my heart to only see them for short periods of time.They arrived on Friday night and ate a nice picnic dinner provided by Susan B. It was so wonderful to just spend time with my family instead of having to prepare food first, especially since I still can't stand or walk very long because of my incision reopening and needing to heal and close. I'll spare you the details as it is very gross. Anyway, we all ate outside in the courtyard and the big kids played with a few of the little kiddos around the large tree planter. It was a little chilly but very fun.

Picnic time after arrival

Picnic time after arrival

Tyler and Meghan on planter

Joseph kept saying how he missed me allllllll day! Camping out in the living room with sleeping bags and couch cushions...everyone finally got to sleep. After the kids went to bed, John and I went to the hospital to visit little Gracie. I took a few photos with our wedding rings. Our rings look the same, mine went on her hand and John's went on her foot. John was able to touch his daughter for the first time ever. 

Daddy and Gracie

Mommy's wedding ring on Gracies hand

Daddy and Gracie-first touch

Daddy & daughter- Daddy's wedding ring on Grace's foot.

Daddy and daughter- first touch

Daddy and Gracie

On Saturday, we visited Grace as a family and all the siblings were able to see her. They just loved it as did I. We were reunited as a family. Sunday we went to church, Seattle 1st ward. It was a very nice ward. On the 5th Sundays they do potlucks to converse and bring visitors. It was very nice to meet new people and hear the testimony's during Relief Society. It was the most diverse group of sisters I think I've ever seen. Lots of beautiful accents in voices as they were from all over. It was a great thing to have a potluck...such a wonderful time to just relax and spend time with family and new found friends. By the way, I've never had Sacrament bread that tasted so great! It was like pretzels. Sweet and soft...I'd like to get that recipe! Sunday went by way to fast for me, knowing that they were heading back home soon.

Day 13 2.4 pounds

                A tour of little Grace's corner

Since today didn't hold a lot of change for Gracie, I thought I'd give you a tour of what helps her stay alive and well. I don't know all the names of the machines but I'll tell you as much as I do. This is something, as a new parent, you never think of when you're expecting a baby. I hope this will show Grace in the future to what extent they went to to keep her alive and how each machine is so very important. It is an amazing thing to see how all the machines work together and, with all the experienced staff, make it happen. Getting to know what they do also helps when the bells and whistles start going off. I know when to jump and when to not worry. NICU's can be very intimidating. 

Gracies big bed equipped with humidity and heat.
The top lifts up and the sides drop down. This is the
highest care bed they have here. It is a Cadillac in the NICU.
She basically drive this beast. If she gets cool, the bed warms up.
The humidity is off now and her skin is toughening up.

This "t.v." shows her heart rate on the green line, oxygen levels on the blue line,
and respirations on the white line. There used to be a red line on the bottom and
that was her blood pressure. This machine alarms for desaturations, apnea, and Brady's so it is
often alarming from one baby or another. 

This is her Cadillac bed warmer. The top #'s are her body temp
and the bottom is the beds temp. The goal is to get her body
temp to stay while the bed temp lowers. She has come down in bed temp
quite a bit since she was born. Room temp is right around 27 degrees C.

This is the wall with all the oxygen lines, air lines and vacuums for suction.

Her name board with touch times.

This is the respirator machine. This is and has
 been her lifeline since birth. It provides
each breath through a tube down to
her trachea. If she fails to breath, it will breath
for her with warm, humid air.

This is part of the respirator which adds
the water and warmth.

This administers her total
nutrition (yellow koolaid, lol)
through her IV.

This machine gives her meds. Right now it has the Endocine
for her heart.

The machine behind her "yellow koolaid"
is what administers her lipids (fat). 

Gracie in her "Cadillac"

Gracie with all her tubes, gidgets and gadgets. 

The cutest little scrapbook page turned into her name plate on the wall. Her hand and footprints were taken her first days
of life. I think they did such a great job!

She even has her own college fridge to
pack her breastmilk in!! No soda pop
or pizza yet but lots of nutritious milk!
Betcha not many babies have their own
fridge!

This is the cart or dresser which holds
all her paperwork,
 tiny diapers, dressings, blankets,
wipe cloths, lotion, etc.

Well, this is the end of her tour and
she is all covered so she can sleep...
this tour wiped her out. She'll say "hello"
another time. 'Night, 'night little Gracie!

Day 12 2.5 pounds

                           Good Morning,
                          Merry Sunshine!

This was little Gracie this morning with the light streaming
 through the window. Good morning, Little Grace!

This is how I found Gracie yesterday morning getting the
 last few zzz's before touch time. One leg in and one leg out.

Today I got to sleep in until 8:10 a.m. Have you ever needed just a little more time to cap off the night's sleep? It felt so good. It is cool and cloudy today so I'm looking to little Gracie to brighten the day. It worked!! As soon as I saw her all snuggled, warm and peaceful, she did exactly that. Her weight gain over the past couple days has been contributed by the Endocin meds. They say she will be losing weight after she comes off of the Endocin. Her urine output is twice the amount it has been. I'm hoping, instead of losing, she'll just stabilize. It's worry-some and concerning when she drops a bunch of weight.

Just a size comparison for width and length of leg.

I got to hold little Gracie for the second time since she was born. It was great! It was so fun to feel her move around on top of me...like she was still part of me. She held my finger for most of one hour. There is something oh so sweet about having your chin, cheeks and lips on a new baby's head, especially with such soft hair. They just smell so good and she hasn't even had a Johnson's baby bath yet. I put my wedding ring on her hand today but didn't have my camera...good things to come, right?

Holding my little Gracie for the second time.


Little Grace was swaddled for the first time today using a very small receiving blanket.  Usually they wait until her temperature probe is off so the monitors don't go all wacky. So they turned off her temp probe for a spell to see if she could keep her temp. The last time I called the NICU, at 11 p.m. tonight, they told me she was doing great with keeping her temp. They lowered the temp in her isolette and unswaddled her as she was too hot. This is a good thing! I'm so excited for her. Any advances I embrace and celebrate with her. Go Gracie Go!! Haven't heard anything back from the cardiologist about her echo-cardiogram today.

Getting put back into the isolette after holding time.

Starting to get swaddled for the first time

Little Gracie getting swaddled with a very tiny receiving
blanket for the first time.

Day 11 2.4 pounds

Today was pretty uneventful with Gracie. She has now received three doses of Endocin & will get another echo-cardiogram tomorrow to see if the PDA in her heart has closed.

I received such a WONDERFUL surprise in the mail from all the primary children and sisters at my church. First I was so thrilled to have MAIL in my mailbox at my little apartment, then to see that it was from Richland, WA and finally to be totally blown away at the love I saw inside. LOTS of beautiful drawings and love messages from children & heart felt letters of encouragement from my friends, a beautiful pink knit baby hat for Gracie from Peggy N. & 2 very CUTE preemie outfits from Missy S. I took the hat over to the hospital and put it on little Gracie and, aww, she looked so adorable. Thank you! I feel like she is wearing love from all of you and I'm seeing love all around me. WOW, I FEEL LOVED!! I now have love hanging all over my walls. I cried when I read the notes and saw all the pictures the children drew. What thoughtful things were said. I bet they didn't know that their notes of love would end up as wallpaper! I love looking at them.

Get a load of this...I ordered a great gourmet pizza for dinner last night. Oh yeah, it was good. It was half lamb with olive oil and some kind of greek cheese, and the other side was chicken cordon-bleu. I have yet to try the chicken side as one slice was huge and all I could eat. Yummy and apartment delivery...awesome. Only the second time I've had something to eat that wasn't hospital food or grocery store food for over a month!

This is a very big request for everyone who sees this blog... Please pray for some friends of ours, the Ostrowsky's. They were in a head on collision this past Sunday night. They need lots of prayers for healing with Dan, he has a crushed pelvis, Kristi who has a broken wrist and damaged elbow and knee. Also for their children through this difficult time of recovery. I heard that Kristi pulled Dan, who was unconscious from their burning car. She is another hero of mine. It is a miracle that they survived. Thank you for including them in your prayers! We need each other so very much in this world. Through powerfully wonderful celebrations to sobering, knee dropping, humbling situations. Thank you for being there! I love you and so does Grace!

Day 9 2.0 pounds

Well, here I am with my first entry ever on my first blog ever! Amazing things keep happening. You may want to check my blog every day as you may miss a miracle, either something Grace is doing or another blog entry! :)

Today little Gracie finally hit 2 pounds even. Watch out sumo wrestlers, she's gaining on you! The day started out with a potential plan of Grace getting extubated off of the respirator and advancing to the cpap. First she needed to to have an echo cardiogram to see if all was well then they would have proceeded.

Little Grace getting her echo-cardiogram

Grace's little heart 

Well, when the results came back it wasn't good. Her heart is bigger than it should be (I just think it is all the love she is getting from friends and family :)) and the PDA vessel was larger too. Not good. She sure is a fighter though. No indications these things were even happening. So the next step was to start the medication, Endocin, to see if that would close off the PDA in her heart. They will know if it is working in just 12 short hours but will continue with the meds until 48 hours have passed, so Thursday the 26th of August. They have stopped all feeds (it was only 1 teaspoon given through a drip line over a 4 hour period), she has to stay on the ventilator/respirator, and her picc line has to stay in. The problem with Endocin is that it slows the kidneys and intestines plus it makes her blood vessels smaller. So her GI track is expected to slow down or stop again. Poor thing, just get it going and then it stops because of meds.

Please pray for her PDA in her heart to close quickly with Endocin and that her kidney, intestines and blood vessels will make it through this round of medicine and she will heal enough to be transported 215 miles back home soon.

Mt.Rainier from the plane 

I'm on my charter plane...lol

John just started getting the bills from my week stay at Kadlec Hospital there in Richland, WA and the sweet little airplane ride to Swedish Hospital here in Seattle, WA. Kadlec Hospital without my OB and Perinatologist was $50,000.00. Yikes, we love insurance! Want to hear the cost for just the airplane ride with the gorgeous view of Mount Rainier? Drum roll please....$20,000.00...and they didn't even give out peanuts! Oh and a bathroom, nope, catheter's are handed out at the door. Don't do it...just pay $200.00 and get peanuts and a tiny toilet and call it good. Anyone going to come visit me?? I miss all of you!

Day 8 1.15 pound

Today was the best day for Grace & me. We got to spend 3 1/2 hours doing kangaroo care(skin to skin) together. She didn't have any breathing or heart issues at all. It was the best nap I have had with her heartbeat and breaths next to me. Awe inspiring. Her GI track just started working. Yea! Poop baby poop. :) Do you have a hero? Mine is a little 1 pound micro-preemie who is fighting for her life & is succeeding.