Our First Days in Step Down

Here we are in our cozy step-down room! We got here yesterday around 1pm. Emma Kate is doing great! She is eating ok with the Portagen, considering how gross it smells (and tastes, I'm sure). I think she's just glad to have food in her belly. Dr. Kirshbom said he was going to leave her alone for a few days and monitor her chest tube output. The word is that she will have it in through tomorrow, maybe Monday.

Emma Kate just had an x-ray, which is part of her daily routine. When she has her x-ray, we lay her down on a little table and hold her arms up by her ears. Of course, she cries when we do this. But today I noticed this bulging part of her abdomen, right underneath where her chest tube comes out. The nurse practitioner looked at it when we got back to the room and said she wasn't concerned. It was probably just a muscle that comes out when she cries. They did a lot of moving things around during the surgery, so it is just some part of her body that has to heal. Friends, please pray that this is nothing major. Of course, I am worried, like any mom would be. It is a scary thing to see this part of her body bulge when she is crying. It isn't hard and it only pokes out when she is crying. The doctors don't seem concerned, so I will try not to be.

Everything else is looking good, so far. She was taken off any supplemental oxygen this morning and her sats are where they should be. Other than that, it is just a waiting game. I don't know how long we will be here. I hope we're gone early next week, if all goes well. Again, thank you so, so much for your prayers!

Post Op Day 2

Yesterday was a good day!

Around 10:30am Emma Kate was extubated. Typically after extubation you have to wait 4 hours to feed, but one of the sweet nurses came over to visit Emma Kate and saw how thirsty she was. So she talked with a doctor and they let her have a little Pedialyte only 2 hours after extuabtion. Let me tell you she wolfed down that Pedialyte in about 2 minutes! She was so thirsty! She had a total of about 3 or 4 ounces of Pedialyte over a 2 hour period.

Dr. Kirshbom came by to check on Emma Kate a little bit later and noticed that she looked really comfortable. He decided that she should go back on Portagen and said that if she does well taking it, we might be able to feed her Similac in a few days!!! How exciting! She did great with the Portagen yesterday and didn't even reflux once! We are so proud of her.

So far, Emma Kate's drainage has been minimal; maybe 75ml or so since the surgery was completed. It is not chylous so far; it is very clear! Just PRAY that it remains that way. Things are looking good right now. We don't have orders yet, but our nurse today said she will be one of the first to go to the floor today (which means we will leave ICU).

Thank you for all of your prayers. We are on our way up to see Emma Katie now.

Post Op Day 1

It is pretty early; As tired as I was last night, I am surprised that I'm awake. I guess I am ready to go see my baby.

Emma Kate had a good day yesterday. And by good, I mean that after surgery it was pretty uneventful. She was in pain for the latter part of the day after her nerve block started to wear off. I know I sort of touched on this before, but this surgery is supposed to be pretty painful to recover from. Apparently the anytime you have a thoracotomy (an incision in the chest to gain access to thoracic organs) it is painful. Her incision starts right around the bottom of her right shoulder blade, running horizontally under her right arm. Its not a very big incision, but because there are so many nerve endings and muscle tissues in that area, its quite painful to recover from. As any mother feels about her child, I hate that Emma Kate will have to endure any pain whatsoever.

Anesthesia gave her a nerve block during the procedure to help prevent any pain for 6-12 hours after surgery. We could definitely tell a change in her demeanor when it wore off. She got Morphine and Versed several times yesterday. She has been intubated (had a breathing tube) all day yesterday. Our nurse told us that this would help with pain, since breathing might be more difficult because of the placement of the incision and the pain in that area. They did a few trials last night, slowly weaning her off the breathing tube. She did fine, but she had several doses of morphine in order to help her deal with increased pain. The prediction is that she will be extubated this morning.

She has never had any problems in the past being weaned off the breathing tube, so I feel she will do fine. The tube goes down your throat and into the lungs, passing your voice box on the way. (Not the medical definition of being intubated, but you get the idea). She normally has a really "scratchy" voice for several days after being exubated. After her first surgery, she made no sounds at all, even when she was visibly crying. It was so pitiful.

When her nerve block and pain meds started wearing off yesterday, it was hard to see her. She is basically immobile, because of her breathing tube and because her arms are basically tied to the bed. Babies at this age always are, because if something is in your mouth that you don't want to be there, your first reaction is to reach up and grab it and take it out. The restraints don't hurt her, but I can imagine feeling pretty helpless when I can't move my arms the way I want to.

This was taken post-op Glenn, but this is very similar to how she looked yesterday.

The plan today is to see if she can be extubated and see how she does. Then she will probably start being fed! (First time in 11 days!! Yay!) And then we'll see about her drainage. She has her chest tube in still and it has only drained about 35ml as of last night, which is good. It is all blood at this point, just PRAY that after all the excess blood drains out that her chest drainage is minimal. This will tell us whether the surgery worked or not. Only time will tell.

Praying for Emma Kate

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Out of Surgery

We just spoke to Dr. Kirshbom, who completed Emma Kate's surgery in under and hour. He said they tied off the thoracic duct area and performed a pleuredesis. She did great in surgery and tolerated everything well. We can see her in about 1 hour in CICU. Thank you for all your prayers. Keep it up. Apparently this is going to be a painful recovery, since there are so many nerve endings in the area of the incision. Thank you, friends!

Surgery is Tomorrow Morning

Here we are again, at Egleston. As I type, Emma Kate is fast asleep in her crib, even though she is currently having an echocardiogram done. She has had it rough this morning. At least three different phlebotomists have come in to stick her multiple times in order to squeeze any drop of blood from her little body. She is a human pincushion. Poor baby. It is so hard to see her go through all of this again. She is poked every day, but of course, she still wears a smile.

I am glad she's sleeping so much because tomorrow she will have surgery. Dr. Kirshbom's surgical coordinator came to speak to us this morning. She will be the first surgical case tomorrow. He will attempt a thoracic duct ligation. This means he will tie off the thoracic duct, which is the largest lymphatic vessel in the body. From my understanding, it kind of runs along the length of the spine, but don't quote me on that. This surgery is the next step in trying to solve this stubborn chylothorax problem. In 80-90% of cases, the problem would have been fixed by now, through one of all the different medical therapies that she's been through. This surgery is not a 100% guarantee, so we will definitely be praying about that. God is in control!

Dr Kirshbom just came in and said that this is the second baby he will perform this sort of surgery on. I trust him wholeheartedly. But I trust God more, and I know He will take care of my baby. We are ready for Emma Kate to heal; ready to take her home and love on her and let her play with her big sister. We are ready to let her experience life as a baby for truly the first time. We are ready to have her meet all the family she has not had a chance to meet yet. We are ready for home. Please keep Emma Kate in your prayers today and tomorrow, and we'll keep you posted.

Atlanta

We are in Atlanta. Just wanted everyone to know. We have no idea what the plan is for our stay here. My guess is that we will know more tomorrow when the day shift gets here. As of right now, Emma Kate is in her little crib fast asleep. Her sats are in the mid-eighties. She's peaceful. I am glad we are here. More tomorrow...

Please Pray for Our Heart Friend

Hello Friends,

I would like to ask all of you to keep our little friend Gracie in your prayers tonight. She was scheduled to have her Glenn, but her doctors determined that her heart would not be strong enough to withstand the surgery. She was then placed at the very top of the donor list and waited for just a short time for a heart. She received a heart today, but her body is rejecting it. If her heart is rejected, she will not be re-listed for another transplant. Please pray for little Gracie tonight. Pray for her sweet family and for God to heal her. You can visit her mom's blog by clicking here. Thank you friends!

On To the Next Step

Emma Kate had a hard night last night. I don't blame her for screaming her head off. She has had a grand total of two bottles (of yucky Portagen) over the past week! Poor baby! I just wanted to break out the Similac and feed her. I HATE this more than anything! I hate seeing her suffer, its just so pitiful!

This morning, Brooks and I spoke with Dr. Romp, who is the on-call cardiologist, for about 30 minutes or so. We are ready for the next step. Last night was the last straw for me, Brooks and Emma Kate. I think we are headed for surgery. Dr. Romp is calling Atlanta today to get details on when to transport her over (most likely Monday). I imagine we won't know a surgery date until we get to Atlanta.

As far as the surgery is concerned, we aren't sure exactly what they will do. Actually, they aren't exactly sure what they will do to correct this problem until they open her up. There are a few different approaches to treating chylous effusions that I won't get into now, and it isn't certain as to what causes them. There is no right answer at this point.

While we are waiting to hear from Atlanta, I thought it would be cool to get to know some of the readers of our blog. I LOVE getting comments on the blog, because one day I am going to show Emma Kate what all she has been through and that SO MANY people are praying for her and getting updates on her. I have a "sitemeter" that tracks the readers of our blog. It tells me where they are in the country, or even in the world. We have readers from all over, including Alabama, Georgia, Kentucky, Virginia, New York, Washington, Texas, Connecticut, North & South Carolina, Oregon, Minnesota, Illinois, Oklahoma, and many more states. There are also readers in Australia and Iceland that are regularly checking! It is amazing to me that the life of my little girl is touching so many.

I would love it if each of you would take a moment to comment. You can do that by clicking on the "comments" link at the bottom of this post. You can leave a note, a prayer or just a quick hello for Emma Kate! Thank you. And it's nice to meet you!

Happy Half-Birthday, Emma Kate!

My Sweet Emma Kate,

I cannot believe you are 6 months old! You are such a precious blessing to me, Daddy, Anna Brooke and everyone you come into contact with! You have to be the happiest baby I have ever known. We are so very thankful that God has blessed us so richly with the sweet gift of you. Every day I wake up and realize that another day with you is a gift. The past six months have been a roller coaster of emotions for us all. But what keeps me going is your smile! You have taught me to smile through it all; through the valleys and the mountaintops that life brings. It brings tears to my eyes to think about all that you have endured in the first half year of your life, but you are so strong. God knew exactly what He was doing when He brought you into our family. I love you so much, my little angel! You are so sweet, innocent, beautiful and joyful! I am so very thankful that you are my precious daughter.

Love,

Mommy

Update #2

Emma Kate's cath is complete! Everything went smoothly and she is sound asleep in her crib in our room. Her vitals are being checked every hour to make sure she stays stable. Her sats are good for her, hovering right at 80-83%.

In a nutshell, Dr. Law did not find any collateral arteries that needed to be coiled off. Her pressures in her lungs and heart are low, which is good, but they do not need to be any lower. If he had coiled off any arteries whatsoever, it would lower her pressures, and he didn't feel that it would benefit her at all. Basically, he does not feel that the chylous effusions are caused by the supposed increased pressure in her body, simply because the pressures aren't high.

So, where do we go from here? The medical intervention that we will try now is a strict TPN diet. No fluids except for TPN and dextrose. The team was able to get a PICC line put in. It's not in the greatest place, comfort wise, because it is in her left groin. But it will enable her to have TPN administered in a place that has a lower risk of the line coming out. We will try the TPN therapy through this weekend. (YES, we are here for another week...) If this does not dry up the effusion, our next option is surgery.

I do not want it to have to come to that.

Thank you, everyone for your prayers. Please know that this is how we are getting through all of this.

Update #1

Just had a short conversation with the Child Life Coordinator who said the cath is going well. I don't have much more information than that, honestly. Apparently, it will be a long case, so it might be a while until I have further updates. Thanks for praying!

Heart Cath Day

I just walked down to the cath lab with little Emma Kate in my arms. She was pretty much out of it, although she wasn't asleep. She was still smiling, as always. I gave her lots of kisses and then handed her over to Libby, our sweet Child Life Specialist, who has given lots of love and attention to Emma Kate during our stay here.

In the cath lab today they are going to insert a PICC line if they can find an acceptable vein. They will then start the procedure, inserting a catheter into a vein or artery in her groin and following it up into her heart. She will be completely asleep and intubated during this time. The catheter will have a camera on the end of it, which will take pictures of her aortic valve. At that time, they will look for collateral arteries which have grown out of the aorta, going into the lungs. If/when they find these collaterals, they will insert a platinum-based coil into it, stopping the blood flow. This should help lower the pressure in her heart, which is the goal. Somehow, the doctors feel that this should assist in decreasing the drainage from her chest. I'm still not exactly certain how that works, but I trust Dr. Law, who is doing the cath, with my daughter. I know he will do a great job.

Thank you for your prayers, friends. I will update when I have a report for you! Keep checking back!

Rough Night

Friends,

Quickly just wanted to let y'all know what is going on. Emma Kate had a rough night. Since her PICC line came out, they will not reinsert another for at least 24 hours, I believe. A couple of nurses from CI came down to see if they could find any vein that would allow her to get TPN. They found one in her left wrist, inserted an IV and got the fluids moving. Not 30 or 40 minutes later, her arm started turning red and then almost purple! A neonatologist came down as well as the on call cardiologist. They turned off TPN and the color in her arm went back to normal. So, no IV nutrition all night; just Pedialyte. She slept well all night and took a long, long nap today. Dr. Lau (not Dr. Law, but Dr. Lau) came in to let us know that they would like to do a heart catheterization on EK tomorrow afternoon. They will measure the pressures in her heart and see if she has developed any collateral arteries, which might be compensating for the higher blood volume which comes after the Glenn. Its hard to explain, and I will try to better express what will happen tomorrow when I have more time. They will also probably put in a central line (for the purpose of getting TPN) during the cath. In the meantime, we can give her Portagen!!! Yay! At least she won't be hungry. I know I sound like a broken record, but thank you for all your prayers! I know they are getting us through this tough time! I will update again soon!

Keep Praying

I believe in the power of prayer, so I am going to ask all of our friends to please pray right now for Emma Kate! Her PICC line came out about an hour ago. (You can kind of see where it was: on her shoulder there is a blue IV. The PICC was inserted in her neck behind her ear). They cannot reinsert a PICC for a day or two, so a nurse from CI is coming down to see if she can insert a peripheral line (regular IV) so she can continue to get nutrition. If she cannot get a line, Emma Kate will have a strictly Pedialyte diet until Tuesday, most likely.

My prayer is that God has mercy on this sweet child. She is so innocent and precious and beautiful! I cannot bear to see her hurting anymore! Please, friends, pray with me.

Latest Hospital Update

I am finally home long enough to update everyone on Emma Kate's progress. I couldn't fnd computer access at the hospital and needless to say, I've been pretty busy otherwise! It has been an exhausting week. Mostly for my sweet girl, but it has taken a toll on all four of us. I guess I will start at the beginning and catch you up...

I guess it all started on Monday night. I kept telling Brooks that I felt like Emma Kate's breathing was off. She was grunting with every breath and there was a bit of retraction in her ribs when she breathed in. I tried to not let myself get to worried by it, because we had an appointment with Dr. Law (cardiologist) on Wednesday, and I was sure that she would be fine until then. However, Tuesday morning, EK's breathing seemed worse. She was really laboring to breathe. It was so scary! I called the office and Dr. Law wanted to see us immediately! I packed up the girls and we headed up to UAB hospital. She had an xray done and an echo. Sure enough, Dr. Law could see that EK had fluid on her lungs. He assumed that it was a chylous effusion (meaning that an accumulation of chyle fluid was around her lung). There was enough fluid that she was essentially only using one lung to breathe! Fluid in the chest cavity is just taking up space and keeping the lung from expanding.

EK was admitted to the hospital and Tuesday night had a procedure done where a small chest tube was put into her right side to drain the fluid. It didn't take very long, and she seemed pretty happy other than the fact that she was starving! Here is a picture of EK in the NICU right after the procedure.

They ended up initially draining about 210cc's of fluid (about 7 ounces)! The plan was to keep her on the Portagen formula, and see if the fluid tapered off.

Let me back up a little bit. And here we go with a science lesson:

If you remember, Emma Kate ended up with chylothorax while she was recovering from surgery in Atlanta. Chylothorax results from lymphatic fluid accumulating in the pleural (lung) cavity. This happened as a result of some of EK's lymph nodes being damaged during her Glenn operation. It doesn't happen to everyone who has heart surgery, but it is not an uncommon complication. After her surgery, chest tubes were placed in her thoracic cavity in order to drain fluid from around her lungs and heart. Usually, this fluid just tapers off and the chest tubes eventually come out. However, in her situation, chyle started to drain into the chest tubes. It is a milky-white fluid. In order for the chyle to stop draining, the lymph node(s) that were damaged have to heal or seal off. For that to happen, there can't be much fat in the diet. This is relatively easy to manipulate with babies, who just drink formula or breast milk. All you have to do is change the formula for awhile. So she was put on Portagen. This didn't work.

Wednesday night Emma Kate was put on an IV med called octreotide, which basically just dries stuff up. But it is either hit or miss. And with EK, it was a miss. Her drainage didn't get much better. And her IV fell out (it was in her hand) after about 24 hours of her getting the med, and it should have worked by then.

The next step is to insert a PICC line (peripherally inserted central catheter) and stop all her food intake for one week (yes, we will be there at least 1 more week), giving her only IV nutrition, or TPN. A PICC line is a long IV that starts either in the arm or some other vein and goes into a central "line" or artery and then into the heart. In Emma Kate's case, they could only find access to a vein in her neck! AHH! The PICC line will allow her to recieve all her nutrients via IV. The idea is that not feeding the stomach for a while will dry up the lymphs and in turn, the chyle will stop and her lymphatic system will have time to heal.

I was sick about her having the PICC put in. I had to leave the room when they were insterting it and I just cried my eyes out for like an hour! It was very difficult to hear my baby screaming (although they assured me she was not in pain!)

As of last night when I left the hospital, they still had not started TPN. My poor baby was so, so hungry! I called Brooks last night before I went to bed and he said they will not start TPN until the morning. He was able to give her some Pedialyte, though, which hopefully took the edge off her hunger. Brooks said she was so excited when she saw the bottle! That just broke my heart! It is so hard to not feed your child when they are hungry. They don't understand! I am so, so sick about this more than anything else almost!

Friends, thank you for all your prayers for Emma Kate! Again, I will ask you to pray. Pray that TPN works. Pray that she does not feel hunger! Pray that she will not be in any pain and that her little lymphatic system will heal.

Emma Kate is such a little inspiration to me. She is happy in any and every situation! She smiles at strangers that stick her with needles and wake her up in the middle of the night to get vital signs. She is so very precious and she is teaching me so much! I never thought I could love so much! My heart breaks for her every time something happens to her that makes her cry. As her mommy, I just want to take all the pain away. I just want her to be healthy! That is my only request. She is already the happiest baby!

By the way, Happy Valentine's Day and CHD Awareness Day! Wear your red for Emma Kate!

i started to create a post, but i am so tired...
i will finish the posting tomorrow.

Update

Emma Kate had a chest tube put in this evening and immediately fluids came out. In all, about 200cc's of Chylus has come out so far. This is a large amount so it is obvious why her breathing had become so labored. Dr. Law will keep the tubes in as long as possible to make sure all gets out before removing. This means we could be in the hospital for a few days.

Since the procedure, Emma Kate has been doing really well. So far, in about two hours, she has had 4-5 ounces of Portagen by mouth and has not refluxed once! Hopefully she will continue this which I know will make her feel better. We are going to try to get some rest tonight and I will update with more news tomorrow. Thanks again for your prayers!

Back in the Hospital

Hey everyone,

Just a quick note to say that Emma Kate was admitted to UAB hospital this morning. Last night she was having difficulty breathing and I took her to see her cardiologist this morning to check on it. She has some fluid around her right lung that is pretty significant. They will drain it at 4 o'clock today and we'll see if it is the chylous fluid or what. Then I guess we will proceed from there. She'll be in the hospital for at least a few days. My guess is that we'll be there the rest of the week. Thanks for praying again, friends and we will keep you updated!

Bethany

We Are Home!

Emma Kate was discharged yesterday from the hospital and we are finally at home! I am so thankful that we are back! We had a pretty good night last night, with the exception of a few complications getting all Emma Kate's meds in order. She is on a lot of medications! We have the best pharmacy in the world, who went above and beyond for us, staying late to make sure she got everything she needed!

I have a feeling today I will be spending a lot of time on the phone straightening things out with insurance, home health and other stuff. I also have a ton of laundry to get done! We had a couple of throwing up episodes last night and this morning. Emma Kate's reflux is my main concern with her right now. So friends, again I will ask, please keep her in your prayers. I know that refluxing really bothers her, and she seems to be in pain when these little episodes occur. I can't wait for her to feel completely better! Other than reflux, she is doing great! Right now she is napping in her little bassinet.

It is so good to be home!

Finally an Update!

She's such a happy baby

Chillin' in the exersaucer!

I know we have kind of left the blog world out of the loop for a while. I'm sorry. After I got back to Birmingham, Brooks and I have both had our hands full. Well, I've had a lot more free time than Brooks has had, that is for sure. Poor guy, he's been taking such good care of Emma Kate. He's the best dad in the whole world! I am so thankful for him and for being such a loving and caring father. I couldn't have picked one better for my kids.

Brooks has been consumed with trying to help Emma Kate feel better. Right now, she is on continuous feeds. She wasn't tolerating the bottle or bolus feeds via ng tube. For the past couple of days she has been refluxing pretty badly. He said her face gets really red, her heart rate and sats drop while she heaves and tries to get everything up out of her little tummy. Poor baby. It was not that bad when I was there! Her congestion and coughing has cleared up for the most part. She had a total of about four breathing treatments over the past few days and we think that has helped her tremendously. She seems to feel much better afterward. As of this morning her lungs looked clear (no more fluid on them) and her diaphragm looked less elevated. Thankfully, Dr. Kirshbom is back this week and we can take some action and get Emma Kate feeling better.

At 11am EK is having an upper GI test done. She will drink a little and have an x-ray behind her to figure out where it is going and what is happening when she refluxes. Then a decision will be made on how to treat her. The meds obviously aren't doing the trick. Apparently, surgery to fix this is an option, but it is the most extreme case, I believe. We will have to wait and see what the doctor thinks. Please be in prayer for Emma Kate this morning, especially at 11am (EST). Thanks, friends! I will update when I have more info.