Happy 1 Month!!

Happy 1 Month Birthday Charlotte!!!

So much has happened in one month and it has flown by. She has started to become more alert, making eye contact for longer periods of time and I wish I could report sleeping longer between feedings...but all in all she is a healthy, thriving, beautiful baby girl and we couldn't ask for more!

                                                                                    

We heard from Texas Children's Hospital on Friday with the results from the research and tests they did on Beaux. The preliminary results show that it was OTC that caused his death. This is what the doctors had suspected all along, but they wanted to be positive before they made a diagnosis. Our next step is to go to Texas Children's Hospital where I will be tested to see if I am a carrier. If I am a carrier then they will continue to do testing on Charlotte to see if she is also carrier. Most likely I am a carrier and have just lived my whole life with out exhibiting any serious symptoms. Most likely Charlotte is a carrier too, but there is a possibility (although small) that she is not effected at all. They are waiting on a few more results from Beaux's testing and we will most likely go to Texas Children's at the end of March or beginning of April. 

We found this website www.nucdf.org to the National Urea Cycle Disorders Foundation. It is a great website that explains OTC better than I can. We still have a lot to learn, but this has been a good start for us. We have been in touch with the Executive Director of the foundation and she is putting us in touch with other families that have been in our similar situation. We are looking forward to meeting these families, even if it is only virtually, and hearing their stories and experiences with having lost children to this genetic disorder and then having children that live with this disorder.

Here are a few more pics taken in the last week or so:

We finally enjoy bath time!

Micah and his ladies

Getting stronger everyday

A Brighter Day

Let me start by apologizing for not posting since Monday. I had a rough start to the week, but things have been looking up the past day or two. I found myself in a bad place and needed some time to sort through some feelings. I read something the other day in one of the great books that people have sent me for support. Having gone through a similar situation the author said that she had days where she was "finally strong enough to feel weak". It may sound kind of strange when you first read it, but it is exactly how I feel some days. I feel like I have to be willing to be weak and breakdown to make any progress in the healing department. I have to be strong enough to admit to others that I need time. Time to myself, time with my thoughts, time to read, time to process this whole experience of losing a child. I really think I walked around in a fog, still am in some respects, and have recently started to feel the raw pain and emotion. Even though I am "strong enough to be weak" I also have to be strong enough to wake up and determine if I am going to have a good day or be an emotional wreck all day. I have a daughter to take care of and a life that needs to be lived. I am slowly finding the balance of when to give in to the sadness and when to hold my head high and move forward.

On a more humorous note, I have officially had my first "psycho-mom" moment. The house next door to us is for sale and every time the realtor shows the house we are in high hopes that these people might be the ones that will buy it. The neighbors themselves I don't have a problem with, it is their ravenous dogs. Before I offend any dog lovers out there, let me explain. As you are well aware, I myself am a dog lover....hence the two yellow labs that have taken over our home. Our dogs are a far cry from the best trained dogs on the block, but they don't bark non-stop morning, noon and night. The "neighbor dogs" or "psycho dogs" we so affectionately call them are driving me maaaaaaaad. Every time I try to get Charlotte to sleep in her crib they start a barking episode and wake her up. A sleep deprived mom dreams, hopes and prays for the moments when the baby goes back to sleep and you better hope something doesn't get in the way. FYI - this is still going on after two rather nice notes and one not so nice note to the neighbors. Yesterday I had enough. I took my flip camera and filmed them barking their terrible barks and gnashing their terrible teeth and then sent it to the municipal court and the police department. The next step is a citation issued to them....ooops! I really didn't want to have to play hardball....but you mess with my baby, you mess with me.

I am really a nice person....I think I just need a little more sleep. Off to have a well deserved nap!

Happy Valentines Day!

We hope everyone has a wonderful Valentine's Day full hugs and kisses.....

So hard to get a good shot. We either have eyes closed, one eye open, crossed-eyed or spit up involved. Oh well, she is still pretty darn cute!

Beginning to get the hang of it....we thought

Just as we thought Charlotte was really getting into a nice routine of eating every 3-4 hours, she throws us for a loop and acts like she couldn't possibly ever get full and that she must eat every 1-2 hours or she might just wither away. She is very much the drama queen when it comes to eating....she must have it NOW or five minutes ago. Just another part of what makes her tick...love her more and more each day. Speaking of days, can you believe she is 22 days old. Some days it feels like she has been with us for quite sometime and then on the other hand I can't believe it has already been 22 days since we welcomed those precious babies into the world. Time is flying and I hope I am stopping to soak it all in. She won't always be this small, this needy, this helpless, this hungry!

We continue to have wonderful support all around us. Thanks again to the friends and family that brought meals by, walked the dogs, sent cards, sent books, sent gifts, called or emailed this week. I apologize if I don't always come to the door or answer the phone calls and emails. Most of the time I am busy with Miss Charlotte and then honestly sometimes I just need a "time-out" to process and grieve....and rest :)



Some visitors from the past week:

Eliza testing out the Mama-Roo....she approves!

Aunt Lou and Benny came to visit

Caught a smile!

Finding a new normal

 Things will never return to the way they used to be. Our lives were changed forever when we lost Beaux. Each day is full of two different pulls - grieving and loving all at the same time. Through this daily struggle of joy and loss we have to find a "new normal". We refuse to drown in the grief and must move forward for Charlotte, ourselves and for Beaux.

We are getting used to our new "normal" here at the Hatley household. We are still learning the in's and out's of having a newborn and getting to know the many quirks of Miss Charlotte. A few things we have learned already:

#1: Must place new diaper under dirty diaper to make the switch, 9 out of 10 times she is going to "go" mid diaper change. Not sure how many times we have washed the changing table cover, but it is almost in the double digits!


#2: This child eats like a horse. She gets fiesty when she is still hungry and lets you know by letting out a big growl/grunt. Don't you dare take her bottle or boob away until she says so!

#3: She does not like to be alone. Can newborns really like to be part of the crowd? I would have highly doubted it before I met Charlotte. She can be chillin' in her Mama-Roo or bassinet and if Micah and I leave the room, she lets out this scream as if to say, "What about me, I want to go". The moment we come back in the room she is fine. She is like yours truly in this respect....she doesn't want to miss out on a thing!

"Lottie" taking in a little Regis and Kelly.

I went to my first "back to normal" activity last night. Micah stayed with Charlotte so I could go to a meeting,  he did great - I am so lucky and grateful to have a husband that participates without hesitation or fear in our daughters life. He watched her again today while I went to the Doctor and they have another date tomorrow night. Speaking of dates....Micah and I are going on a date this weekend! First night out in a LONG LONG time.

FLYING SOLO

Well the mom's are officially gone....it was sad to see them leave, but at some point we have to try this on our own. First night alone and we survived. A few disagreements on what the temperature of the bottle should be, but all that aside - it was a success. Really missed my Mom around 7AM this morning when I needed a few winks after a restless night, but Micah took over so I could rest. I slept a few hours straight and felt as good as new. I have really learned the meaning of "power naps" lately. I never realized how great just a few minutes of sleep can be for you.

Ready to watch the Longhorns Basketball game - Hook 'em Horns!



Ivy "babysitting" - just kidding Mom.....this photo was highly supervised, I promise! I think the dogs are finally realizing that she is here to stay and that their time inside is very limited.

Since the "non snow day - snow day" ruined our pedicure plans for Thursday, I decided I really needed to leave the house on Friday. My first non-baby outing, where did I go you ask....HEB Plus! Just in case you were wondering, I can report things have not changed much in the past two months. It was nice to be out and about, even if it was the grocery store. While I was gone, I missed some visitors - two of the nurses from
Citizens. They brought a sweet little figurine and a poem in memory of Beaux. They also took up a collection and made a donation to Texas Children's Hospital in Beaux's name. The card they brought was so thoughtful and was signed by all the day and night nurses and Doctors that worked with the babies.

Micah and I are still humbled everyday by the outpouring of support that we receive on a daily basis. We know life goes on and the day to day takes over, so for people to take the time out of their busy schedules to check in, call, email or text is greatly appreciated.

Brrrrrrrrrrrrrr....

Our first walk to enjoy the weather before the "Artic Blast" hits

We have spent the last few days just trying to stay warm. Lots of cuddles and blankets and now we are just waiting for the snow - Charlotte's first snow!

"Aunt Fran" went to L.A. this past weekend  and brought back Charlotte's first pair of Stewart Weitzman's. We have a little bit of time before we grow into them, but they are super cute!!!

 

 

 

Charlotte spent the majority of the first 10 days with her eyes closed, but now we are bright eyed and bushy tailed a few times throughout the day.

Today is my mom's bday and I had an outing planned for us to go get pedicures while Micah was on "Daddy Duty". The spa called this morning and said they were closing early because of the snow. All I have to say is that it better snow. I was REALLY looking forward to that pedicure....another day, I guess.

Doctor Day

We took little Miss Charlotte to the Doctor today for her second check up. She weighed in at 5lbs1oz - she is growing like a weed! She should be,  she is eating every 2 1/2 hours...She had a clean bill of health and the Doctor was impressed with her growth and her feeding skills. We go back in 2 weeks.

She really is such a sweet baby and she brings us such love, warmth and joy. On a day like today when things seem to be a little harder or I feel a little sadder I can look over at her and feel peace and relief. She amazes us and has taught us so much already - importance of communication, flexibility and living in the moment are a few of the things I have learned from Charlotte already. It doesn't take long for some people to make lasting impressions in your life. Beaux was with us for 6 days and taught me and Micah a life time full of lessons. He taught us strength and resilience, humility, patience with others, love and kindness.

You always think of the parent-child relationship as the parent teaching the child about life. The roles have been reversed, these two little babies have been sent to teach us and I only hope I can be open to listening and learning.

Thank you for letting this be an outlet for me. I promise to try to keep the "fun times" and the pictures coming. Some days I just need to write what is on my mind and in my heart.