Monday, November 14, 2011

~Life~

So much has happened since my last post. Most notably, we were joined on October 21st at 5:13 in the morning by a beautiful little girl, Adelina Faith Price. Here she is at 2 weeks old.





















Adelina has been a huge joy for us all. At this point (though she is always changing) I think she looks like a cross between Giovanni and Liviana. She definitely has Giovanni's nose and her eyes look so much like Livi's did when she was born. The spider like eyelashes are definitely in her future. The kids just adore her. Just like when Liviana and Giovanni were babies, Aria and Miles start and end their days with a kiss for their new sibling. They argue over who gets to hold her next and lay beside her. They have been excited to see her changing and growing already...the start of smiles, the eyes open all the time, the little squeaks and sounds. Liviana just turns to butter when I hold Adelina on her lap. She looks so peaceful and happy. Livi makes her happy sounds and turns her face towards the baby. A couple of times Adelina has given Livi "kisses" as she turned towards her cheek and rooted around...so sweet.

The days after Adelina's birth were full of joy with her arrival but I did find myself in uncharted territory emotionally. I really could not even look at Liviana for about a week without the tears starting to flow. To feel such joy and such sadness all at once was overwhelming. I felt guilty taking care of the Adelina when I normally spent my day taking care of Livi in the same ways...as you would an infant. I found myself reminiscing of when Livi was first home at 4 weeks old and all of the similarities having another newborn girl. I felt so much sadness to hold new life and know that Livi would eventually bring us the emotions at the other end of the spectrum from that life. Even typing this brings those emotions to the surface. New life forces us to reflect, pause and remember and so much of that reflection I saw when I looked in Liviana's face and those huge, beautiful, eye lash covered eyes. The new life represents hopes and dreams for Adelina and the painful reminder that those hopes and dreams I had for Liviana are forever gone. It is not to say that each day I don't look at her with different hopes and dreams but the growing up, going to school, playing with friends, learning to read, playing sports...those things we think of for all of our children, won't happen for her.

By the second week of Adelina's life the post-hormone storm of having a baby was settling down. The tears when looking at Livi were not as often and I was starting to figure out my days and how to balance caring for and loving on Liviana and Adelina. She is a pretty easy going baby. She has had her moments as I try to figure out if she has dairy sensitivity to what I eat or if she has a foremilk-hindmilk imbalance with nursing. It is all working it self out and she loves the weekdays when it is quiet around the house and loves the weekends less :).

3 days after we welcomed Adelina, my brother Tony and his wife welcomed their first baby, a girl named Jensen. I will get to meet her at Thanksgiving and I absolutely cannot wait. I became an aunt for the first time and think that seemed almost as awesome as having my own 5th child.

2 weeks before the baby arrived we moved. I was 38 weeks pregnant and trying to wrap up sessions, photo processing, orders, e-mails, etc. Nesting takes on new meaning when you move at the same time you nest. I was confident that the baby would not arrive until we were settled. Brad did almost all of the moving by himself and I appreciate all of his hard work so much. He stayed pretty focused on how I was feeling and if he had an inkling that I was going to go into labor soon he started rushing around getting more things done to prepare.

The kids and I mostly made the first move to the new house and then Brad made all of the return trips. There was one day that I went with him to pack up the toy room and my desk. He had to run out while we were there so I was left there, all alone for about an hour. I cranked up the Pandora on my phone as a distraction to the silence in the home. It didn't help my mind much. After a while I was texting Brad and wanting him to return soon. I knew the house meant a lot to us but I was not expecting it to be so difficult moving out. While we had moved in a year ago in September, we had only actually lived there about 7 months because of being in Italy. This was the home that Liviana last walked, last talked, last went up and down the stairs. As I went from room to room I would see glimpses of her. As I stood in the living room I vividly remembered being in the house talking with Greg, the landlord, before moving in. Liviana was running from end to end of the room, laughing hysterically with her left arm swinging back and forth. I remembered her laying in her bed shouting the ABC's instead of sleeping, I remembered as she got more unsteady before we ever heard the words, Leukodystrophy, Miles making sure he held the front door for her as she crawled down the front step. I went to the toy room and every time I turned around I found something of hers that she no longer could play with...that she used to love playing with. Her baby set we got her on her 2nd birthday with the carseat and bed, her drawing table for her lap, her xylophone...I came across it all. I walked in the kitchen and saw her helping me empty the dishwasher and walking up and hugging my leg saying, "Lub u mommy". I was crying at this point and waiting for Brad. When he got there I dried my tears (hiding it is better than facing it for me) and said, "let's get out of here". I didn't go back after that. Part of me wanted to, just because I have such an odd attachment to the place. It is as if walking away is taking more steps away from those memories of Liviana. Brad said he experienced the same thing being there so I appreciate him putting in so much time there by himself despite the difficulty.

This is a busy week. Brad will be out of town from Tuesday night to late day Thursday. Miriam from Italy will be here this week and both Giovanni and Adelina will be doing blood draws on Thursday. Giovanni is getting labs done for his next scheduled follow-up and Adelina's blood will be taken back and tested to determine if she has MLD, is a carrier or is unaffected. The thought of even having to take her in to find out her MLD status makes me sick to my stomach with anxiety. I can't even fathom getting that news...it is really too much to even think about...to write about.

Ironically, the testing date for Adelina and Giovanni is November 17th which is the one year anniversary of Liviana's diagnosis of Leukodystrophy. It is one year from sitting in a hospital room as 3 doctors gathered and told us, "she doesn't have a tumor but we are seeing very clear brain signals that are indicating something called leukodystrophy....there is nothing we can do". I remember going out and calling my mom and going into shock, freezing cold and shaking from head to toe. The last year has been a blur...it honestly has. One big blur filled with the moments of intense clarity. It still, other times, seems so surreal, like it hasn't all really happened. Such an absolutely massive change in our lives in one year. As much as I sit and think about how this has impacted us I think of how it has impacted Liviana. What does she think in her mind about the last year? Does she remember running, playing and talking? Does she understand what happened? Does she dream of running and playing again? I hope she has no sadness.

Because of MLD, this time of year will never be the same to me. I really dislike the thought of the holidays. We found out 3 days before Christmas the confirmation that Liviana had Metachromatic Leukodystrophy and so did her brother. The air, the season, the temperature, leaves, snow, Christmas trees, Christmas carols...they all remind me of the most painful time in our lives. I hate that. Maybe it is a blessing we moved since being in the same house would have made these unwelcome anniversaries even worse.

I also don't welcome this "one-year" because it means I can no longer say, "remember this time last year, Liviana was...bowling, learning her ABC's, potty training, changing her clothes 10x a day, posing for my camera, going to the library with me, saying, "byeee new house" every time we left, asking for her sunglasses....those times aren't recent anymore...they are getting further and further away. I fear those memories and her voice in my mind not being as clear one day. Each one of these anniversaries will just be a reminder that we are further from the "remember when" days.

I don't ever want to focus myself so much on how she "used to be" for fear of minimizing who she is now. I adore and love her just as much now as ever. She still makes me smile and laugh, just in different ways. She has Brad's humor..always has. She laughs at the slapstick comedy of life. Her favorite show (besides Calliou) has always been old reruns of America's Funniest Home Videos. I remember (see, doing it again) last summer (2010) she would sit down with Brad and I after the other 3 were in bed and watch the old AFV shows...laughing out loud. She still laughs at them. I told Brad she would be the child who watched the Adam Sandler movies with her when she got older because I don't. She has an awesome sense of humor. Her laughter fills the entire house. It is fabulous!

Livi was in the hospital last week for a day and a half. The pesky virus that Miles and Giovanni had made its way to her but she doesn't get over it as easily. At first she was just sick but in a matter of a few hours she had labored breathing and was barely responsive when I tried to talk to her. We quickly decided to take her in. Brad picked up Aria from school and left with Liviana. They chose to admit her. Her oxygen saturations were running between 92-98 but were more consistently higher than lower. Her lungs were still clear, just mostly bronchial congestion. Miles, Giovanni, Adelina and I visited her and brought her more of her food. When Aria got home she came to me crying and said that she was upset she didn't get to go see Liviana. I assured her that she would be home soon, which made Aria happy. I have to admit, when they got home her condition still made me feel uneasy. She just wasn't herself and it was one of those times where MLD scared me with the possibilities of what could happen in such a short amount of time. By the next day she was better but still running a fever which we battled on and off for the next 24 hours. This virus seems to be lingering for everyone so I am suctioning her often and hoping we can make it through without another hospital trip.

I have been working on this update across 2 days and as expected I have forgotten the other things I had planned to share. I would like everyone to keep the families of Alyssa and Anaya in your thoughts and prayers. Both of these fighting, warrior girls became angels after battling MLD and Krabbe Leukodystrophy. It is heartbreaking to think of what these parents have gone through and they are never far from my thoughts. Liviana and Giovanni have two new angels watching over them.

I do not know how long to expect the test results for Adelina to take. I believe we are sending off blood work to be tested here in the US as well so I am expecting just a couple to 3 weeks. Please keep her in your thoughts and prayers and pray she does not have MLD...I truly don't know how I would handle that news.

That will have to be all for now since my mind is failing me. I am gearing up for two interesting nights with Brad out of town and 3 night waking children (who almost always wake at the same time). Giovanni is the most challenging, as he seems to be in pain when he wakes and is difficult to console. Think happy, sleepy thoughts for me.

I will update as I know about Adelina.

Hug Your Babies!

11 comments:

Gr8Life said...

Thank You for sharing. I am praying you get a LOT of Good News from your test results! Your family deserves some GREAT NEWS!(((Hugs)))

craftytammie said...

You all face everything, good or bad, with such grace and love and honesty. Wishing nothing but good thoughts for you - and for Tony too :)

Destiney Fischer said...

We love you <3 sorry I have been bad about keeping in touch :(

Jen said...

Your family is never far from my thoughts. Praying for some great news in the weeks to come and peace for you until it does.

Anonymous said...

I love you Amy Price and you are always in my thoughts and prayers. <3 -Billie

Anonymous said...

I just read your blog. Again I am in tears. I just seen Alyssa's beautiful name and the tears just start coming. Never give up! I am so happy that Alyssa will be watching over all the MLD babies now. I am praying you get good news from the test results for your baby. I can't wait to see the post NO MLD!

You are in n my prayers!
Winter

Lynisha said...

Amy - I am a fellow Nebraskan and an aspiring photographer, I saw your blog posted by a photography page on facebook last year and have been checking up on you ever since. Congratulations on a precious new life! What a journey you are all on - know that you & yours are often in my prayers.

joanna said...

Congrats on your beautiful baby girl!!! I will pray that all goes well with her test results!!! You give your children such strength and they are so fortunate to have you as I know you feel the same about them!!! Praying that you find peace thru this difficult time! It's so difficult to forget those sad moments but hope you can to enjoy the good ones!!

Blessings to you and your precious family!!

Joanna(mommy to Gabi, LCDH)

Jody said...

your family has been in our thoughts and prayers....would love an update.

lisa ann said...

Family First calls for the repeal of all so-called 'renewable energy' targets on the basis that they are ridiculously expensive and totally ineffective in achieving any environmental benefit.

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