appreciating the SMALL things

We have been home now for a few weeks, almost a month. I think just about every day someone has asked me, "So, how are things going now that you're at home?" My short answer is usually, "Things are great. We're back in a routine and we're loving being home!" There are so many great things that I am loving about Emma Kate being at home, I could go on forever.

Mostly, it just feels like normal life. That is what I love the most. I love feeling like I have a "normal" baby. I love that if I don't say anything, you wouldn't know about her heart. (She just looks that great, people!) I love that she is getting stronger every day, that she is eating rice cereal, fruits and veggies, that she is back on normal formula. I love that she is sleeping in her crib and wearing regular clothes (not a hospital gown). I love that she is on fewer meds now than she ever has been (she's still on five, but at one point she was on 8 or 9!) I just LOVE normal.

Today we went to see Dr. Law for a check-up. Emma Kate's x-ray was completely clear. He said her heart function looked wonderful, her valve isn't as leaky as it had been before, and she even gained a bit of weight. She's now 12 lbs 8 oz (still small, I know) but she is making progress. Dr. Law doesn't want to see her for FOUR months! That is so awesome!! She'll be almost a year old when we go back to see him!

Emma Kate spends a lot of time playing on the floor with her toys. Here she is the other day after having rolled over from her back. It was the first time she has done this that I can recall! I am so thrilled! (Don't you just love all my piles of laundry around the room?) She hates being on her tummy, but she is slowly making progress. I know she's a bit behind on her developmental milestones, but look at all the kid has been through! I think for a child who has been through all she has, she's doing simply awesome! We have a physical therapist who comes to the house to work with her every other week and does great with her, and I think soon she'll be caught up.

For now we are just enjoying being home and appreciating all the little things in life.

Seven Months Old, 4 Years Strong

Well, my sweet baby girl is seven months old (as of March 19th)! It doesn't seem possible that she is already this age, for several reasons. Mostly because it feels like the past two months we've been in the hospital and we have missed out on life so much.


It is good to be home with my little angel. She is loving it! She loves playing with her toys, sleeping in her own bed and actually wearing clothes. She is drinking from a bottle and doing great! We restart Similac MONDAY! (Woo hoo!) I can't wait to fatten that little waif up! She is only 11 pounds 12 ounces-so little! She is slightly behind in a couple of developmental areas right now, but I suspect that after being home for awhile and regaining her strength, she will catch right up to where she needs to be.

Emma Kate,

My sweet girl, I love you! I am so proud of the little person that God created you to be. Again and again you amaze me each day. The sweet spirit God has blessed you with is so incredible. All of the scars on your body remind me every day of how hard these past seven months have been on you. But you smile and laugh despite all you have been through. God has revealed so much to me through you and to me, you are living proof that He exists. There was a 1 in 10,000 chance we would have a baby like you, and I'm so thankful that we were that 1. You make me so happy. I can't wait for you to live life like any other baby would. This spring and summer are going to be so fun for you, I just know it. We are going to have fun, little one! Happy 7 month birthday!

Love, Mommy

Do they look alike?

The first one is of Anna Brooke at 7 months. The second is of Emma Kate. I keep saying how, except for the eyes, I think they look alike. But I had the HARDEST time finding a picture where I felt they looked alike. I don't know, what do you think?

Also on March 19th, Brooks and I celebrated our 4 year anniversary. A LOT has happened in the past four years. I think that they have been the most happy, busy, amazing, trying and life-changing four years of my life. Brooks, I am so thankful for you and the wonderful husband that you are to me. You are an amazing father to our girls. I couldn't have chosen a better Daddy for them! Who knew that just weeks after celebrating our one year anniversary, we would have our precious Anna Brooke? And then just two years after she was born we would enter the most difficult, most scary, yet beautiful time in our lives? I am so proud to have emerged from this storm by your side. I love you!

She Loves Her Big Sister

Since we have been home, Emma Kate has not taken her eyes off of her big sister! It has been the sweetest thing. It is almost like she is saying, "I missed you so much, Anna Brooke!" And Anna Brooke has been such a big helper with her. I think she missed her Emma Katie, too.

So far, life has been pretty normal around here. As far as recovery goes, Emma Kate doesn't seem to be in pain at all, really. I am even picking her up underneath her arms sometimes. Her incisions are healing quite nicely and I'm sure they will fade more as time goes on. Right now I am concentrating on getting EK to play on her tummy more. I think once she gets stronger she will be able to sit up on her own and eventually start crawling. Another thing we are working on is baby food. She was given the go-ahead to start rice cereal back when she turned 4 months. We tried off and on each week, but she never really seemed interested, so I didn't push it. So far, since we've been home, she has tried sweet potatoes, applesauce and today we tried peaches for the first time. She seemed to like those the most! Next Monday we get to start her back on regular formula. I am in hopes that she will start to fatten up then. She is not even twelve pounds and she will be seven months old on Thursday! My tiny girl.

Heart Families to Pray For

Lately I have been thinking a lot about other heart families that are going through some trying times. Our blog friends, Alli (pictured at left) and her husband Kyle are expecting their first baby, Grant, any day now. Grant was diagnosed with HLHS a few months ago. Please pray for them, as they embark on a journey many of us know all too well. Pray that Alli's labor and delivery go smoothly and that Grant is a champ through it all! Pray for his surgeons, nurses, doctors, and other caretakers, too. I know that Alli must be going through some difficult emotions right now. I can totally empathize with her! Alli, please know that you are in my prayers. You can follow Grant's Journey here.

Another family that has been on my heart a lot is the Gledhill family. If you remember, I posted about their little girl, Gracie, who also had HLHS and received a heart transplant. The heart she received, however, did not work the way that the doctors had hoped, and she went to heaven on March 2nd. The story of sweet Gracie has been on my heart for quite some time now. I have never personally gotten an email or response from Michele, Gracie's mom, but I have been following their blog for the past six months and I've left a few comments here and there. I don't know whether they have visited here or not, but just in case, Michele, please know that you are in my daily prayers and I think about you and your Gracie often.

As you know, our heart friend, Charlotte had her Glenn yesterday. Thank you for praying for her. She is doing so great! She's already off the breathing machine and went to step-down today! That is so amazing! She is supergirl! Yay Charlotte!!

Charlotte

One of our HLHS special heart friends, Charlotte, is having her Glenn tomorrow. Charlotte's mommy, Jenn and I have become email/Facebook buddies throughout the past several months. It is nice to have someone to "talk" to who is going through the same stuff we are. Jenn has been so kind and supportive of us, praying for us always and updating her blog readers on Emma Kate. She made the "Praying for Emma Kate" button on my blog here.

Friends, please keep Charlotte, her family, her doctors and other caretakers in your prayers tomorrow. Pray that her surgery goes smoothly and that there are no complications. Click here to visit Charlotte and her big brother Sam's blog.

Week One at Home

Thursday we went to see Dr. Law for Emma Kate's follow-up visit. Her x-ray was clear: NO FLUID has accumulated since her tube was taken out! Hurray! She has been ordered to stay on Portagen for another three weeks and then we will start Similac.

Things have started to get back to normal around here. Emma Kate is still sore sometimes, but for the most part, she doesn't seem to be in much pain. She is enjoying her toys, playing with her sister, watching herself in the mirror. She is getting her strength back, too. For a little more time every day we are putting her on her tummy and letting her sit in the Bumbo. She doesn't like to sit in it for long (I think it hurts her side still) but she is working up to where she used to be. Things are going great now and for the most part, EK is so happy all day. I think she knows that she is home.

Our Beautiful Girl

Emma Kate is so glad to be home!

Tolerex, Anyone?

Since we have been home, Emma Kate is taking all her Portagen feedings via bottle, which is a whole different scenario than when we came home after the Glenn. Back then, she was on Tolerex formula and they were all NG. Because of this, we have a TON of Tolerex as well as feeding pump bags. Does anyone need this stuff or know of someone who does? I can ship it wherever. We also have a bunch of unopened syringes and 3 NJ tubes (no idea why they sent those...) Our home health won't take the formula back, even though the box is unopened. Our pediatrician's office is having a hard time figuring out what to do with it (it's a donation, what is the big deal?) So, I figured if someone else could use any or all of it, I'd be glad to send it out. Just let me know.

Finally Home!

Life is finally getting back to normal. We got home on Monday afternoon and Emma Kate has been doing great! She is just as happy as she can be. After her chest tube came out on Saturday, she had an x-ray each day to make sure that fluid did not reaccumulate on her lung. Everything looked clear and it was such a relief to hear the news that we would finally be going home! Tomorrow we have an appointment with Dr. Law to check her chest via x-ray for fluid reaccumulation. So far she does not have any symptoms. Her breathing is normal and she is so, so happy, other than the occasional cry from the pain from her side.

Here are some pictures from our most recent stay at Egleston!

In the ambulance on our way to Egleston. She actually had a good time, even though she looks sad here.

Playing with her feet. This was two days before surgery.

Emma Kate and our wonderful surgeon, Dr. Kirshbom. We LOVE him!

Finally!

We are home! More tomorrow.