Saturday, June 23, 2012

Breaking news!

16 Weeks 5 Days

This just in from the living room, Adaline rolled over from her tummy to her back!

I of course missed this event because I am in the other room hooked up to the milking machine.... argh.

I got time #5 on video! Please ignore the pump in the background.... and my obnoxious nicknames for her.

Tuesday, June 19, 2012

A Visit From Our Favorite Nurse

16 Weeks 1 Day

I posted this on facebook a few days ago, but I wanted to post it here as well as this is an important part of Adaline's life!

This is why I almost cried each time there was a shift change at the hospital when Adaline was there. Her nurses were so good to her and genuinely cared about her. It is such a contrast from the experience a family had abroad with their newly adopted child that I had read about:
"I experienced first hand the disgusted look the EMS people gave my little girl. The way they left her barely clothed on the bed. The way they spoke the words: "Down Syndrome'', spitting them out with anger and repeating over and over. We were unfit parents and she should have remained in her institution. Five hospitals refused her medical care. My facilitator held her hand out for 200 hrivna bills more times than I can count at the hospital that finally admitted her. That money was paid to the doctor, to the nurses, as "incentive money". One nurse was especially horrible to Kori and caused her pain on purpose. My facilitator met her in the hallway and handed her a 200 hrivna bill in exchange for humane treatment for my daughter. " - You can read more here and see before and after pictures of their daughter -

The person that is holding Adaline was one of her nurses while she was in the hospital with RSV. She has kept in touch with us to see how she is doing and she came to visit today. She also made Adaline a blanket for her to snuggle while she was in the hospital.

Sunday, June 17, 2012

Stop Killing my Daughters Friends!!

16 Weeks

Horrible picture of me!
On Saturday, Adaline, my son and I did our first LifeWalk. It supports a local organization that does a lot of what Planned Parenthood does minus abortions. I have always been very pro-life, but after being in a situation where it is "more ok" to abort in some peoples opinion, fuel has been added to my fire. It was a HOT day, but I wanted to get out there to show everyone how cute my daughter is, to tell our story and to get the word out about Reeces Rainbow.

The other day I had asked Adalines therapists how many other kids in their 0-3 program they have. I expected to hear a number like "50", but the answer was "5".... 5??? Adaline is the youngest in the program by a half a year.

The statistic that 9 in 10 prenatally diagnosed children with DS are aborted has always upset me. It saddens me that these precious lives are never lived, but it was one of those things that didn't directly affect me.  However, at the walk it hit me that these children would be my daughters friends... they would be the ones that "get" her, that she can relate the most to. These are friends that my daughter will never know because they are being killed. It makes me SO mad. She will have to go through life with a fraction of the support and companionship that she could have had.

Monday, June 11, 2012

A Good Week for Development

15 Weeks

Adaline has gone quite awhile without doing anything new and exciting. My son did/does exactly the same thing, so I know I shouldn't worry, but sometimes I wonder if she will just be a baby forever.

However, just like my son, when it rains it pours!

First, in church on Sunday she held her head up with perfect posture for about 4 minutes during a song. She may have done it for longer, but I was worried about her and had her rest against me.

Then, today I caught her doing this:
She has kicked the rattles before, but she seems to be looking at them now and looks like she actually intends to kick them.

I am still waiting for my smile and keep thinking she might be doing it, but sometimes she lets out gas or something right after. I am waiting for that smile that gets brighter when you smile back and that hasn't happened yet.

I have also started making ribbon flowers for my other blog

Thursday, June 7, 2012

Cardiologist and Feeding Tube

14 Weeks 3 Days

1 day old
14 Weeks old
Look how small that hat is on her now!

So, I have not posted in awhile. I have been busy feeding her. It is almost all I do unless I can get someone to help and even then she has been less interested in taking a bottle from others than she is from me... it is mind numbing and exhausting, but worth it!

At her last cardiologist appointment they threw around the "F" word.... aka feeding tube... They said she was not gaining enough. She was gaining about 3/4 of an oz per day and they wanted her to gain an ounce per day. I went into hyper feeding mode and for the first couple of weeks she gained more than an ounce a day, until she hit 8lb and then she just stopped. I wondered if she just forgot why she eats because she had a bottle in her face all the time. I tried following her cues again. I begged on facebook for volunteers (thank you so much to those that responded) to feed her in the mornings so I could give my son the attention he was desperate for. I set alarms so I could feed her in the middle of the night and my husband got up early so he could feed her before work. I spend an entire therapy session with the OT talking about feeding issues. She STILL was not gaining an ounce per day. I decided to quit my job and not go back to work so that I could care for her full time for the foreseeable future. 

It bothered me because she is in all other ways acting very healthy. She is awake for most of the day 8am-midnight. She is chubby, she is very active and alert. It was not that she was too tired or lethargic to eat either. She is just FULL. She would pull the bottle out of her mouth with her hands, bite the nipple or suck milk in to spit it in your face. She was actively fighting being fed. 

So... today I dressed her in the heaviest outfit that I thought I could get away with and I braced myself for a fight against the tube. When we got there they said that they were not concerned. She was barely below what they want her to gain and she was in the 50th percentile (adjusted for DS and prematurity) for both weight and height. 

The good news didn't stop there though! Her VSD is almost closed and her PDA may close also. She still has an ASD that will need to be operated on, but she is doing so well that they may wait until she is past 6 months old to do it. 

Prayers are working! Please keep them coming!