Surgery Update

Cousins!

Yesterday I received a call from CHOA's surgery scheduler, Tracy. She informed me that they received all of Emma Kate's cath information from Dr. Law and they were ready to schedule her Glenn. Her surgery will be on Friday, January 23.

I am so ready for this surgery. I know that sounds dumb, but Emma Kate is getting more and more blue. Her oxygen sats are getting lower. She seems to be getting tired a bit more easily; she sleeps a little more. I know you can't really tell in pictures and you might not be able to tell even by just looking at her in passing. But trust me, she is a lot more blue than she was even a month ago. I know this surgery isn't going to "fix" her, but I feel that it is another step to her getting better.

Tracy said that the main thing with this surgery is getting through the scar tissue from the last surgery. Depending on how long that takes, the procedure will take about 3 to 4 hours. During the Glenn, "the shunt is removed, and the superior vena cava (the large vein that brings oxygen-poor blood from the head and arms back to the heart) is connected to the right pulmonary artery. Blood from the head and arms passively flows into the pulmonary artery and proceeds to the lungs to receive oxygen." Apparently she will still remain "mildly cyanotic" (blue) after this procedure. "This operation helps create some of the connections necessary for the final operation, the Fontan procedure."

We've been told to be prepared for a pretty fussy baby after the Glenn. Because of the redirection of the blood flow from the top half of the body, they think that these babies get headaches. This fussiness lasts a couple of weeks. :( One good thing about this surgery is that it generally has a pretty quick recovery time. We were told that she will probably be in CICU for 2 days and recovery about 3 or 4. So maybe just one week total!

Please keep Emma Kate and her surgeon, doctors and nurses in your prayers as we prepare for this next big step!

Happy 4 Month Birthday, Emma Kate!

Emma Kate turned 4 months old yesterday! I can hardly believe it! (I know I say this every month). I love this age. I took her to see the doctor yesterday for her 4 month check up. Everything looks great and Dr. Stone is very pleased! Emma Kate is 11 pounds, 1/2 ounce. She's 23 inches long. She's tiny, in the 10th percentile for both, but that is ok. She has always been a tiny girl. Her progress is just fine.

She is starting to look a bit more blue than she ever has. Her pulse/ox reading was averaging about 68% yesterday and that had me a bit worried. (FYI: pulse/ox reader indirectly measures the amount of oxygen in the blood. People with "normal" hearts would probably have a reading of 99 or 100). Emma Kate's average readings have been anywhere from 75 to 85. I called the cardio. office just to double check that she was within normal range. The nurse told me that she should be just fine, but she is telling us that it is time for her Glenn. We are still waiting to hear from Dr. Kirshbom's office about when her second surgery will be. All the cath information was sent over to Atlanta last Saturday, so it has only been one week. We are very anxious, though!


Emma Kate,

You are so very sweet! I am so glad that we've had the last 4 months to get to know you and love you! Your personality is starting to really show. You can sleep through anything still and you are picky about very few things. You are still eating well and we are so proud of you. You eat about 2 or 3 ounces every 2 to 3 hours. You are enjoying the bottle. You had a heart cath last week and you rebounded from that like a little champ! I was so afraid that you wouldn't get your sweet, smiling personality back, but you did after only a day! I know that was so hard on you, sweetie. We are still waiting to hear when your next surgery date will be.

One of your favorite things is your sister. If she is in the same room as you, you cannot stop staring at her. She is all over the place and you follow her around the room with your eyes constantly! We can tell you love her. Anna Brooke loves you, too! She is always talking to you and saying sweet things to you. You also love to look in the mirror, especially at yourself! You laugh and giggle like crazy when you see that cute little girl in the mirror! It is a precious thing to watch. You also love sitting up in your Bumbo chair. You are getting so strong. You're holding your head up really well and you're doing great on your tummy. You prefer sleeping on your left side at night. Your cheeks are so CHUBBY!  We love to kiss them! :)

Some other things you are doing at 4 months old: you laugh and giggle a lot! (You're very ticklish, too). You are grabbing toys with your hands and you love to kick your little legs and push your feet against things. You scoot around your crib or on the floor when we put you down. You also chew on your hands a lot and you're drooling quite a bit.

We love you, Emma Katie. You continue to be such a blessing to our family!

Love,
Mommy

My Sweet, Silly Girls

just goofin' around

A little about our day

Well, we are home! Today was a long day, especially for Emma Kate. We are glad to be done with it! But I couldn't have asked for it to go better than it did. Emma Kate and I got to admitting a UAB hospital a little after 6 this morning. There were a lot of little old ladies in the waiting room who were ooohh-ing and aaahh-ing over her. She was wide awake and very happy. She loves the attention. She had such a great morning, despite being hungry, poor thing. She had her last bottle at 3:30am. She didn't start really getting fussy until about 10am. We expected to have her in the cath lab well before 10, but there was an emergency procedure that had to be done. So around 11, I got to walk EK down to the lab with one of the hospital staff. He was great with her! He had her smiling when he took her behind the doors and that made me happy. I went and got some cafeteria food and came back to the room. About 90 minutes later, Dr. Law called and basically said everything went perfectly! What a relief!

Thank you, God, for our little blessing, Emma Kate! Thank You for sending Your angels to watch over her and keep her safe! Thank you for her doctors and nurses that have taken such great care of her. We are truly grateful! We are so thankful to all of you who have been keeping us in your prayers and thoughts! They are truly what is carrying us through all of this!

In Recovery

Emma Kate's heart cath is complete and she is in recovery! Her procedure didn't begin until around 11am and only took 1 1/2 hours which is definitely a good sign. Dr. Law said that everything looked great from the cath and he feels she should have a good recovery. Emma Kate should be in recovery for around 90 minutes and then she will be taken to a private room to be observed. If all goes well, she might even be able to come home tonight! We will update again once we have more info. Thanks for your prayers!

This Thursday...

... is Emma Kate's heart catheterization procedure! Please be in prayer for her, her cardiologist (Dr. Law) and the nurses and other hospital staff. Most likely this will be an overnight stay. I am getting more nervous about it, but I know that God is in control and we have so many people praying. Thank you!

In case you are interested in learning more about what a cardiac cath is click HERE.We will update the blog as soon as we have a computer and time to do so.

Quick Update!

We took Emma Kate to see Dr. Stone (pedi) on Tuesday to follow up on her ear infection. She has been acting so much better the past several days, thankfully! She's been such a sweetheart, smiling and laughing at us all the time. I really feel like she's showing us her little personality. She's always happy, that sweet girl. While we were at the doctor's we had blood drawn. This was just to check to see if she is anemic before her heart catheterization next week. Everything looks normal!

After the visit with Dr. Stone, we went to visit Dr. Law, her cardiologist. Brooks got to come with us, too. Again, everything looks great. The blood flow looks good and the squeeze of her heart is good, too. Apparently the regurgitation in her tricuspid valve is looking better, also, due to the increase in her medications. Dr. Law also looked at her aorta and said that sometimes the aortic arch might narrow as time goes on, and if it does, they can use a ballooning procedure during the cath to stretch it out a bit. However, her echo did not reveal anything to give him reason to believe that this will be the case next week. Yay!

I spoke with a nurse about Emma Kate's cath, which is next Thursday. We will be able to walk her down to the lab. They will give her medication to sedate her for the procedure. This procedure will tell us how her heart is doing from the inside, if that makes sense. It will measure pressures, blood flow, take pictures, etc. This is a fairly routine procedure, but I am still pretty nervous about it. I mean, inserting a probe into the groin and going up into the heart sounds a bit scary to me. But I know that they know exactly what they're doing and I have fully confidence in them! Please keep Emma Kate in your prayers next week!

After the cath we will know more about when her Glenn (2nd surgery) will be. Dr. Law's prediction was the beginning of January. We have no way of knowing for sure, though, until he sends all of the info over to Atlanta for Dr. Kirshbom (surgeon) to review. Of course, I'll update as soon as we know.

We're glad things seem to be going so well with Emma Kate. We're so proud of her. She has discovered her hands and is always grabbing things now. Not really reaching for them yet, but she's sucking on her fingers holding on tight to toys, etc. She is such a flirt, too. She smiles at just about everyone she sees. She admires her big sister so much. She's always watching what she's doing. I have been trying to put her on her tummy more often, and I think she'll start rolling over soon once she gets a bit stronger. She is a wiggle-worm. She loves her Bumbo chair, which allows her to sit up and look around. :)

Okay, time to go to bed! This "quick" update took me almost an hour to do! Thank you all for you love and support and prayers! We will keep you posted!

I Am Thankful

Today right about now I was expecting to be updating my blog with how things were going with Emma Kate and her heart cath. We are not at the hospital, we ended up having to reschedule the heart cath for December 11 because little girlie got sick. She may have a stomach bug, we're not sure. Either way, she has been having really loose stools as well as throwing up a few times. On top of that, she has a low-grade fever going on. It got up to 100.5 yesterday, and has fluctuated up and down the past 24 hours. All seemed well for the first half of the day yesterday, but after the home care nurse left (of course!) she started acting really cranky and not herself at all. She wouldn't take much of her bottle and she's still not doing great on that. I am hoping that she just has some sort of 24 hour bug and she's better by tomorrow. Right now she is passed out cold in her car seat (her fave nap spot) and I am going to use my better judgement to leave her there and let her rest.

Things have been so incredibly stressful for us lately. Most of you know about Brooks' job loss back in August. For those of you who don't, we need your prayers more than anything right now! When Brooks was let go, it was a very tough time for us. We were moving and it was right before Emma Kate was born. We had a lot of stress going on and it hasn't stopped raining since. We've been trying so hard to make ends meet, they haven't completely, but we know tomorrow is a new day. We don't always know when and how we will be provided for but we are! And we are confident that God is going to keep on taking care of us and providing for us. We don't know when or how or through whom, but we know that He'll provide a job for Brooks.

Through our trials, the Lord is still blessing us daily, and showing us that He is in control. Emma Kate is doing so awesome, gaining weight (10lbs 5.5oz as of yesterday!!) and learning how to take a bottle so quickly. She hasn't had any complications and her cardiologist and pediatrician feel that she is doing awesome. Anna Brooke is such a joy to us and she's healthy and happy and doing great! We find so much joy every day in our children! We are so thankful for the blessing we have in them. We haven't gone hungry, not one single day! We have a place to sleep and play and eat and relax. We have cars that run (most of the time) and we have had a very understanding and loving support system in our families. I don't know what we would do without all of you! We love you guys more than you can imagine and are so thankful for all of the blessings God has given us through you!

With Thanksgiving coming up, I felt it was really necessary for me to remember what I am thankful for. I have to. Every day I know I could whine and whimper about what we don't have. And I do that sometimes. I am not strong, it is not me. It is Him. All Him. I could not do this without strength from the Lord.

Sweet Emma Kate

I realize these all look pretty similar, but I love them all! By the way, Emma Kate now weighs 10 lbs 3.5 oz! :)

Thoughts

"Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him." -James 1:12

"And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverace, character; and character,
hope." -Romans 5:2b-4

"For I consider the sufferings of this present time are not worth to be compared with the glory which shall be revealed in us."-Romans 8:17

Music has always spoken to my heart. I love to listen to music. I've had to drive many miles in the past and I don't know how I would have gotten through the long hours without music. I am pretty amazed at the power it has. More specifically, I believe that worshiping through music, singing, playing instruments is very powerful. Recently I have been listening to some songs that have brought me to tears every time I hear them. Maybe it is all we are going through lately, maybe it is God stirring my heart and whispering to me this way. Either way, I feel like I can more clearly understand God's plan for me when I hear these songs. Please take a moment to listen to these songs and let God touch your heart.

Nichole Nordeman, Gratitude


Bring the Rain, Mercy Me

Praise You in this Storm, Casting Crowns

3 Months Old!

Emma Kate is 3 months old!

She is doing great and she's such a joy! We went to see Dr. Stone (pedi) a couple days ago for some blood work. He was very pleased with how her bottle feedings were going. In fact, last night I got her to drink 90mls (abt 3oz) at one feeding! I was very excited about that. She spit up some, but it wasn't too bad. Next Tuesday is Emma Kate's heart catheterization. We have to be in admitting at 6am! And it will definitely be an overnight stay at the hospital. Sad. But honestly, I'd rather be there just to make sure we are in good hands if something goes wrong. I pray that EK will do well and she will recover well from the cath. She will have to be intubated for the procedure, which I was not happy to hear. But when we see her, she won't be intubated. I just hate to think of all that baby is going to have to go through again in the coming weeks and months. We don't know yet when her Glenn (2nd surgery) will be. After the cath next week, her cardiologist will send all the info gathered from the cath and send it over to Dr. Kirshbom (her surgeon) in Atlanta. They will make a determination on the surgery based on her information. So maybe a week or two after the cath we'll know something more definite. I know that this surgery is supposed to be the easiest of the three, from what we've been told. But, hey, it is heart surgery and it is going to be so hard to hand over my little precious girl to have her chest opened up again. There are always risks. Thank you for your prayers! We so much appreciate and treasure them! Please continue to pray for Emma Kate. We are so grateful for her and for the past three months she's been our little girl!

Sweet Girl, I Cannot Believe You are 3 Months Old!

My little Emma Kate,

You have reached so many milestones in the past month! Your biggest yet: you are finally drinking from a bottle! I am so very proud of you! It took a while, but you finally got it. I think Dr. Law scared you when he said you might need to have surgery to put in a G tube. You were not having that! Good job! You are starting to get so strong, too. I think if I start putting you on your tummy to play more, you will be rolling over before we know it. You can roll over half way now. All of your doctors and nurses and other friends are so happy with how well you are developing and growing. Your reflux seems to be pretty much under control. Of course, you are still on several medications, but they are helping you out a lot right now.

We've been out and about a lot more over the past few weeks. In fact, we even went to your big sister's Gymboree class twice this past week and you seemed to love looking around at all the bright colors and hearing the children laughing and music playing. It has done you a lot of good, I feel.

You are still enjoying your swing and your baths most of the time. We have been putting you in your crib more to take naps and sleep and you are out cold when you lay down in there! It must be so comfortable! :) You also love to ride in your sling when I take you places. I think you like to see what is going on around you. You have started talking more to me and Daddy and sometimes Anna Brooke when she's not too busy. You are even laughing a little bit, too! It is the most precious sound. Your favorite person is your Daddy. I think you two have a special bond. Every time he is near you, you flirt like crazy with him!! You smile and look away and you are always happy when he is holding you. He loves you so much.

We all love you, so many people! You still have so many people praying for you and I know that God has sent his angels to watch over you and keep you safe. You are such a precious little girl and we are so thankful for the past 3 months.

Love,

Mommy

Done!

Today is my birthday and I got the best news! Our home care nurse weighed Emma Kate today and guess what? She weighs 10 lbs, 2 oz!!! That means she gained 3 oz since Monday and she's been doing more work eating over the past 48 hours than she ever has in her life! I am so thrilled! I called our pediatrician and gave him an update. He said he was fine with us keeping the tube out and as long as she continues to grow and we don't see and signs of her basically stressing herself we should continue to keep it out!

All day I was hoping for this and I am so thankful that we are finally at this point! It feels great to have a baby without a tube hanging out of her nose. It feels so... normal! I am sure that Emma Kate feels better, too. (Can you imagine having that thing in your nose and down your throat?) I am also glad that she has a chance to feel hungry and want to eat. She never really had a chance to feel that normal, healthy sensation of hunger until the past few days.

Emma Kate is doing so awesome and I'm so thankful that she's my little miracle child. The past several days I have been so in awe of her. I keep telling Brooks how I just can't believe she only has half of a heart! It really blows me away that she seems so normal and yet, she is doing so much more work than we are in our bodies. I am truly grateful that God has blessed us with this little being. I feel so blessed to be her mom. I can't wait to teach her all the things that a mommy is supposed to teach her child. I am so glad that I get to teach Anna Brooke how to love another person: little Emma Kate. I am so humbled that I get to teach them about Jesus and how God created both of them just the way that they are, for a specific purpose. I love my little angels! It has been a great birthday and I am so grateful for what I have in life.

We are Tube-less!

... for today, anyway!


Yesterday our OT and nurse came by at the same time (very rare). I got to chat with both of them about feeding Emma Kate. She is gaining weight steadily, weighs 9lbs 15oz, and she's doing good with bottle feeds. She is consistently taking more than half of her feed by mouth each feeding time. One concern I had was that EK is on continuous feeds every night for 8 hours at a rate of 25ml per hour. She doesn't wake up hungry. We feed her around 8:30 or 9 am. I want her to be hungry so she'll eat more from a bottle. The nurse agreed and said that she thought we should just try feeding on demand during the day from now on. This morning I thought, "Lets try without the NG tube!"

So here we are at 1:30 in the afternoon and she's had two feedings today. At 9am she took 42ml my mouth and at 11:45 she took 60ml! She's sound asleep (eating wears her out!) but I am sure that she'll eat again when she wakes up! Pray that Emma Kate does well with her feedings and maybe.... just maybe we'll be done with the NG tube soon!

Lift Up This Family

Kristine and I were pregnant and due around the same time, both of us knowing that our babies would be born with HLHS. Please pray for them during this difficult time. http://k27star.blogspot.com/

She Finished a Bottle!!!

Yay, yay, yay, yay YAY!

Emma Kate just took her first entire bottle by mouth! Woo hoo!!!!!!

I cannot express how excited I am about this. I got a Dr. Brown's bottle thanks to some friendly advice from Jenn, another HLHSer's mom. Emma Kate's feed is 69ml (just over 2 oz) every 3 hours. She took the first 53ml at 9:30am then I gave her an additional 16ml at 10am! She finished every bit!

PRAISE GOD!!

Farewell, Dear Friend

Anna Brooke said good-bye to a very fond friend two nights ago: her pacifier. Her paci has always been there for her in good time and in bad, but the time has come for her to let it go. I had been prepping Anna Brooke for this for a long time, but was unsure of how to handle the permanent separation between her and this comfort object! I had a few ideas, but one I thought she would really respond to was the "Paci Fairy" (sister of the Tooth Fairy). That now that she is a big girl (and a big sister) she will have to let the Paci Fairy take her paci. The idea worked great! It took her a while to fall asleep that first night but she had a surprise waiting for her the next morning that she was looking forward to. Anna Brooke has only asked for the paci once or twice since then, and I reminded her that the Paci Fairy had to take it since she was a big girl. She seems okay with that and has done great without it!

Her final paci.

Putting the paci in an envelope for the Paci Fairy to pick up.

Leaving the envelope outside the front door....

... and opening it the next morning to find her surprise!

All her goodies: A little Einsteins movie, and some "birthday cakes" along with a note from the Paci Fairy.

More Halloween Fun

Brooks took Anna Brooke down to Georgia for Halloween. They had a fun time! I think it was great for them to get out of the house and go do something! :) I wish Emma Kate and I could have joined them! Halloween morning before she left, Anna Brooke & I made cupcakes. Here she is pictured putting on the sprinkles. They look yummy. They tasted only ok.

Trick-or-treating with Aunt Kristy, David Micah (football player) and Aunt Cheyenne.

2 Months Old!

The past month has flown by! Its hard to believe that Emma Kate is over two months old now. She is growing so fast and gaining weight like a champ! I'm so thrilled to see her grow every day. It amazes me so much that she is so normal. I know that might be weird to say, but my child has half of a heart and she does basically everything that a baby would normally do. She's amazing and we are in awe of her every day!

Emma Kate, you continue to be such a precious blessing to us all! As of Thursday, October 30, you weigh 9 lbs, 12 oz. You have the most precious smile. You are very social and love to "converse" with Mommy and Daddy, making the sweetest cooing sounds. Generally you are very happy. You still enjoy your baths and your swing, and since we've introduced you to the playmat, you love that too, just like your big sister did. You also enjoy being carried in the sling. You like to see what is going on in the world around you. Another thing you love is sleeping in your carseat. You hate to be buckled in, but if you are sleeping, that is where you want to be! :)

We are trying more and more to feed you with a bottle, but you aren't quite sure what to make of that. Your big sister loves you so much. She always makes sure you are ok and gives you your paci when you cry! She's very interested in your toys, too. You are still sleeping though the night and taking several naps during the day. You're starting to put yourself on a schedule. We love you sweet girl and we're thankful every day for the precious girl that God has blessed our family with.

Emma Kate Lately

Emma Kate has been doing awesome lately! She has gained 3 lbs since birth and weighs a healthy 8 lbs 13.5 oz! She saw Dr. Law, her cardiologist yesterday and he said her heart is looking good. Mia, our home health nurse came today for a visit and helped Emma Kate take a bottle. She took HALF of her feeding by mouth! Her doctors would like to slowly wean her off the NG tube. I would love that, too! I am so pleased and very excited with how well she is doing. EK is smiling a lot now, and getting so cute. She truly is the sweetest baby.

Beautiful

Today is the one month anniversary of Emma Kate's Norwood. I had been debating whether I should put up these pictures, but the more I thought about it, the more I wanted to share them. I know that they might be hard to look at, but this is part of who Emma Kate is, part of her story, and she should be proud of the fight she has fought! She is so beautiful and I want to share just how beautiful she is.

This was taken right before she was taken to the OR on August 22. Needless to say, it was a very emotional moment and a very hard day.

After she came back from surgery. It was hard to see our baby like this, especially since she looked so healthy that morning. She is healthier here than she is in the above picture.

After her bath two nights ago. Her incision has healed very well!

One Month Old

Emma Kate, you turned one month old on September 19! I cannot believe it! This month has seemed very long in some ways and very, very short in others. We are so glad that you are home with us and doing well. At one month old you love to sleep, of course, like most newborns. You are a great sleeper! You sleep through the night, which Mommy loves. You are still getting your nutrition thought your NG tube, but I am beginning to nurse you, and you love that much more than the bottle we had been trying. You are still learning how to suck, since you did not have to do so for such a long time. Nursing will take time, but I am confident that you will do well. Other things you love: the Boppy! You sleep the minute we put you down on it. (Even though the warning label says not to let a baby sleep on it! Yikes!) You also love the swing and love looking at the little mobile that plays music above you. Baths are a favorite of yours, too. You love to have your hair washed and to get all clean. Your big sister loves to hold you and when you cry, she comes right over to comfort you to say "Sshh, baby. Its ok." She loves you very much. We all love you very much, you sweet little miracle. Happy one month birthday!

So Peaceful

...and Life at Home