Headed in the right direction...

Yesterday was fairly smooth and pretty uneventful. Emma Kate had an x-ray and lab work very early, around 5 am. That is always lovely to wake up to! I feel so bad for that poor baby who has to get stuck with a needle at 5 am and then she's taken out of her warm, cozy bed and brought out in the hallway with really bright lights to walk downstairs and have this huge machine take a picture of her chest. That is just torture! Brooks and I have been taking turns carrying her down to help make her more comfortable.

We had a visit from the NP (nurse practitioner) yesterday morning to get an idea of our goals for the day. Emma Kate was on continuous feed all day yesterday. They bumped her up from 20 to 24 calorie-per-ounce Portagen. NP said we will be taking it really slow and probably too cautious, but better safe than sorry. So all day she had no throwing up episodes. She's still got a cough and a good bit of mucus in her head (lungs are clear).

Another area that the docs are looking at is her oxygen saturations. Emma Kate's sats look fine when she is awake and active, but when she goes to sleep, she "desats" (oxygen saturations getting lower). The night before last she was getting down into the high 60s, so a small amount of oxygen was turned on and "whiffed" in her face pretty much continuously. That helped her sats go up. But the NP wanted to see how she would do without O2 since she will not have it at home. During the day we've been suctioning out her airways and doing CPT. I think it stands for Chest Physical Therapy maybe? It is fancy for "smacking her on the back trying to open up her lungs."

Emma Kate kind of had her own agenda yesterday. She pulled out her ng tube twice yesterday. The first time, it was early, so we had to put it right back in. The second time was around 7 pm. The nurse decided to leave it out for awhile. EK went to sleep and her sats improved a great deal. I kind of wonder if all that mucus was sticking to the tube and making her sats drop. Her sats ranged from mid 70s up to mid 80s while she was asleep!! When it was time to restart her feedings, we joked with the nurse that we were going to try bottle feeding her... and she got the ok to let us try!!! She is doing ok... not great. The goal is to have her take about 20 ounces every 24 hours. At 2pm they are going to evaluate her progress to see how much more she has to take. And then we will make a plan. We don't know what that plan is right now. It will all depend on her intake by mouth. From 8pm until now (8:45am) she has only taken slightly over 6 ounces. So we have a loooong way to go today. We are going to wake her up for meds in about 10 minutes and then try to feed her some more.

Here is my prayer request today: Please pray that Emma Kate eats and eats and eats via the bottle! We are ok going back on the ng tube feeds if necessary. But it would be SO NICE to have her back on bottle feeds again!

I will be going back to Birmingham today to relieve my mom from babysitting duties. I can't wait to see Anna Brooke! I've missed her so much. She doesn't know I'm coming home today. It will be fun to surprise her. We will go back to get Brooks and Emma Kate when she is ready to come home. Hopefully that will be sooner than later!

The Latest

After speaking for a long while with the nurse practitioner, looks like we have a timeline for the rest of our stay at lovely Children's. Here are the facts:

Emma Kate is having some respiratory issues. She has a cold. She is coughing a bunch and trying to break up the mucus in her chest.

Her x-rays looked less "hazy" today. The haziness they see on the films is fluid. It is not bad, its just something that needs to go away. She is on several diuretics (three, I believe) to help flush all these fluids out of her body.

The respiratory therapist comes in a few times a day to give her "love pats" as Brooks calls them. He uses this little round, black instrument to pat her chest and back. This helps break up the congestion in her lungs, which opens her airways up.

Her sats are looking good. Usually in the low 80s.

She has not thrown up for 26 hours and 45 minutes!!!!!!!!!!!

She has graduated from half-strength formula (half pedialyte/half Portagen) on continuous feeds (non-stop flow of her feed through the ng tube) to full-strength on continuous feeds at a snail's pace (30ml or about 1 ounce per hour). So far she is doing fine, but it has only been about an hour since the full-strength Portagen has been going. PLEASE PRAY THAT SHE KEEPS THIS DOWN! This will be key to the next step!

Once she has tolerated the full-strength Portagen for 24 hours, they will probably start bolus feeds via the ng tube (larger amounts of formula in a shorter length of time). Then we can attempt feeding her by mouth. We will have to see if she will take the Portagen. They say it is nasty-tasting stuff. However, initially, she wolfed the stuff down. I wonder now if it is because she was starving after surgery. We will have to wait and find out.

She is currently taking Zantac for reflux. They are going to add Prevacid twice a day today and then take her off the Zantac completely. The Prevacid doesn't act immediately in her system, it will take a few doses before it starts working.

So... hopefully, if we are on-track and she meets all her little milestones we are possibly looking at going home on Friday! Thanks for praying and I will update as we know more!

Thoughts Today

I have been pretty emotional today. Another family in the hospital has been on my mind and heart a lot today. This little baby girl's name is Katelyn and she has HLHS, too. I am not sure how old she is, but I believe she just had her Norwood recently. We don't come across too many little ones with HLHS, so we like to meet them when we can, so we can lean on one another. Katelyn is in CICU and Brooks has spoken to her mother and grandmother a few times. They are understandably very emotional and it just breaks my heart. I want to ask you all to pray for little Katelyn and her family.

Things are going well with Emma Kate today. She is on continuous feeds with half pedialyte/half portagen. We will see how she tolerates it. So far, 9 1/2 hours and no throwing up! She has a cold and is kind of stuffy and has a lot of mucus. But I feel like she is doing better. I am just so thankful that her heart is doing great! We just got an update from Dr. Kanter, chief of surgery (Dr. Kirshbom is out this week). We will be here a few more days to get EKs feedings under control. So we keep waiting and praying, and we are making some progress.

One thing that I have been thinking about a lot today is that I still can't believe we are part of this whole "heart" community. It just amazes me how little I knew about kids born with heart defects before I had my own child with one. Our lives have been changed so much by the birth and life of Emma Kate, and I am so grateful that the technology is available today to keep her alive. Thirty years ago, she most certainly wouldn't have survived a short time after being born. HLHS is such a serious, rare defect and if you don't know someone who has it, you probably have never heard of it. February 14th is CHD (Congenital Heart Defect) Awareness Day. I have some stickers I got from tchin.org that I want to give out to others who want them. Obviously, CHD's cannot be prevented, but research for CHDs can be funded if there is more awareness. Here are some interesting facts:

• 
  
  
  Congenital Heart Defects are the #1 birth defect. (Source: March of Dimes)
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  Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. (Source: Children’s Heart Foundation)
• 
  
  
  The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. (Source: Children’s Heart Foundation)
• 
  
  
  Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. (Source: Children’s Heart Foundation)

If you want stickers or information brochures about CHDs, you can go to http://www.tchin.org/. I don't know if they still have them to mail to you, if not, and you still want some, I got several from them I can mail to you. :)


Today I have had a good amount of down time while Emma Kate has been sleeping so deeply. I've been "stalking" other HLHSers blogs. I came across really precious poem written by an HLHS baby's mom. Probably written around Christmas time.



Twas the night that you joined us...all eyes were on earth.
Awaiting with joy for a most special birth.
The angel's stood ready...for each need and care,
But all of them knew... that the Lord would be there,
And I labored on... and daddy was scared,
We waited...and wondered... and hoped we'd prepared.
We knew you were special...but so very sick,
Yet hope had grown in me... with every kick.
And soon it was time...into this world you came,
I heard a soft cry... then I called out your name....
And God held your hands...while the angels stood by,
Since I could not hold you...they hushed your soft cries.
One small angel looked to the father and smiled,
"Can you truly teach hope... through such a small child"?
"An infant so helpless...a baby so new...
"Oh please tell me Lord...is this what you will do"?
God looked from the angel...to the baby's sweet face,
"Through her my young charge... they will learn about grace".
"I penned this child's journey...quite a long time ago,
"And through her great courage...such true love will grow".
"Every hair on her head has been numbered you see.."
"It's my hope that through her... they will learn to see me.
"Oh my little one with a special heart... Great love will see you through.."
"See look that is your family.. They've been waiting for you.."
"I send you to their waiting arms...for a time we'll be apart.."
"But I'll always be with you...for I live within your heart."
And so we held you in our arms...And thanked our Lord above..
In you...we see the miracle, of His undying love.
So when it's Christmas morning, And I watch my children play,
I'll need no great reminders, For I see my gifts each day.

-Stephanie Husted (Mommy to Braeden, HLHS)

After reading that I have cried many tears, but I also have a lot of joy in my heart.

Today Was Hard

It has been a pretty emotional day, so I will probably keep this short.

Emma Kate's heart, her sats, her breathing, it all looks great. The reason we are here is to deal with her feedings. That is it. We think. For whatever reason, EK has a lot of congestion in her head. Her lungs are clear. Despite the respiratory therapist suctioning her out a few times a day, she is choking on the mucous and throwing up part of her feedings. I believe the doctors want to see her go 24 hours without throwing up so much. So... we might be here awhile.

Earlier today we had a little scare. There was an issue with her x-ray this morning and the doctors suspected diaphragm paresis (partial paralysis of the diaphragm). However, according to the surgeon, she is not exhibiting ANY symptoms of this (increased work of breathing, low sats, etc). It is probably just a bad image: EK could have been moving around during the x-ray, who knows. Even though the probability is small, they will check again on her next x-ray. Paresis of the diaphragm is apparently not uncommon when a thoracic surgery is performed, and from what we've heard, it corrects itself, if that is the case.

Either way, please keep praying for Emma Kate. For her feedings to go smoothly and for her x-rays to come back crystal clear tomorrow!

Post-Op Days 2 and 3

Day 2

Sleeping after being extubated the night before.

Chest tube drain. The whitish fluid is the chylous (lymphatic fluid).
Last day in CICU.

Sweet angel.

Day 3
Playing early in the morning with her links.

Little Miss Dramatic. :)

but she can be as dramatic as she wants!

It is Sunday, Day 4 post-op. Just spoke with Dr. Kirshbom and he said that we are going to monitor her feeds more today. I think cardiac-wise, everything is on track. There was actually a rumor yesterday that we could be going home today. I did not gather that from Dr. K. I think the reasons are mainly because she is still doing NG feeds. I will back up a little.

Two nights ago, Emma Kate was not taking her bottle very much, so the nurse ended up putting an NG tube down, which I was not very happy with, but understood why it had to be done. We transferred over to Step-Down and Emma Kate was taking her bottles like a champ. Doing awesome. Her chest tubes were taken out yesterday and they gave her a dose of Versed and Morphine. These made her so sleepy, so of course, she wasn't interested in the bottle much after that. Also, she hadn't had a BM (I hate that term) since before her surgery. So I'm guessing she was slightly backed up. Anyway, last night during one of her NG feeds while she was sleeping, she started to gag and ended up throwing up a good bit; it had a lot of (I know this is gross) curdled milk which was obviously not going through her system.. She looked so pitiful, but kind of relieved at the same time. Our nurse, Brittani, thought maybe if she had a little help pooping, she would be able to get stuff pushed out of her system. And maybe the reason why she wasn't wanting to take a bottle is because she had a full stomach and a full bowel. She ordered a suppository and boy did it work! So, we have more hope today that she will take a bottle. Dr. K wants to take out her NG tube if she does well with bottle feeds. So, now that her system is cleared out and she's not taking any more narcotics to slow down her gut, maybe she will take a bottle. Once we get feeding issues cleared up, I feel that we will be able to go home. Please pray for Emma Kate specifically for that today!

Yesterday Emma Kate had her post-op echo (ultrasound of the heart) and we got back a great report. I realized again yesterday how much of a miracle it is that we even have our little girl here. The echo tech told us that the size of her aorta is comparable to a macaroni noodle! If that doesn't blow you away, then this should: the size of her aorta when she had her first surgery was like a piece of angel-hair pasta! How in the world would anyone be able to stitch up little tiny aortas and still enable the child to survive?! It just amazes me. Obviously, we have a lot of respect for Dr. Kirshbom, but we give all the glory to God and we are so very thankful that it is even possible for her to be here.

Post-Op Day 1

I am going to be honest, today has been a rough day. We are tired. Poor Emma Kate probably has such a bad headache and she fusses every time she wakes up. She is eating well! Poor thing has been so hungry every time she's awake she wants to eat. Right before we left to go eat dinner, our nurse made a comment about the fluids coming from her chest tube. She said they looked a bit cloudy. This could be a sign of a condition called chylothorax. Basically, her lymphatic system may have been slightly damaged during surgery, which apparently is not uncommon. She may have a build up of fluid in her chest cavity. I think they will be treating her with a special type of formula that contains less fat. We don't know for sure that this is the problem, but we are very scared right now. PLEASE keep praying for Emma Kate! She is so precious to us!

Some Pictures From Today

Snoozing away at 6 am before we took her back to the room to get her ready.

In her little hospital gown.

She was such a happy girl this morning!

The nurse even put a little tag on her Baby Tad.

So sweet!

This is when we got to see her after surgery around 1 pm. Not too swollen! :) Brooks and I stayed for a bit, Kiki & Lito saw her, and then we decided to go back to the Ronald McDonald House and take a nap while she was still sedated. I called a couple of minutes ago and they haven't extubated her yet; she is still pretty much out. The nurse said she had opened her eyes a couple of times. They will most likely extubate later tonight or in the morning. Thank you for your continuing prayers.

Update

We are in the surgery waiting room and just got a call that Emma Kate's surgery has been completed. They are in the process of stitching her up and she should be in ICU within the hour.

THANK YOU everyone for keeping us in your prayers and thoughts. We are so proud of our little girl!

Tomorrow is Surgery Day

Today was a long day and we are all tired. It was full of visits with doctors, forms to fill out, xrays, lab work, etc. Emma Kate did so well and smiled the whole day long. Everyone commented on how happy and sweet she was! The surgeons seem to think she will do well with her surgery and recovery.

We are the first case tomorrow, thankfully! That means we have to be at the hospital at 6am. Her surgery will begin at 7:30 am. Please pray for Emma Kate, the surgeons, anesthesiologist, nurses and other doctors and caregivers tomorrow. We will update as much and as often as possible. You can also check Brooks' blog if you don't see an update here. bkeis4.blogspot.com

Also, another small request: Anna Brooke is sick. She is at home with Nana, thank goodness. She has had a fever all day and has been having general cold symptoms, but she doesn't seem to be feeling well at all! I wish I could be in two places at once!

New Surgery Plan

This morning I got a call from our surgical coordinator, Tracy, asking if we could move the surgery date up. Apparently there are a few babies who will not be ready for their surgery until later in the week. Since Emma Kate is ready to go, they wanted to know if we could be there earlier. There is no medical reason why her surgery is being moved, just so you know. Her new surgery date is Wednesday, January 21st!

We will be heading over to Atlanta a couple days before hand so that we can get everything situated. Her pre-op is scheduled for Tuesday. I will try updating here as often as possible once we get there. Thank you for continuing to pray for Emma Kate!

Home Care & Cardiology Visits

Yesterday our home care nurse, Mia, came over to give Emma Kate her Synagis injection. This helps prevent RSV. Lately I've heard of a lot of children contracting RSV(respiratory syncytial virus), which causes infection of the lungs and breathing passages. It can be really dangerous if an infant contracts it, especially ones like our little Emma Kate, with compromised heart function. Apparently there are strict regulations in Alabama for getting approved for Synagis. Cardiac and respiratory babies are at the top of the list for receiving them, thankfully, so we were approved. And even more thankfully, it is covered! These shots can cost up to $1600 a pop! And she gets one each month! So that is a blessing!
This is Emma Kate and Mia. She is so sweet. I am sad that we will only be seeing her two or three more times. She has been so great with Emma Kate! After her next Synagis, EK will be discharged from home care, which is exciting, but at the same time, it was nice to have her weight checked every so often with a nurse that comes to our home!

On Tuesday Emma Kate had her last cardiology appointment before her surgery. Dr. Law did an echo and said her heart function still looked good. He has a really positive outlook on her surgery and recovery. She weighs 11 pounds, 12 ounces!!

Right now, Emma Kate is on several medications. Each day, this is her routine:

Reglan (used to assist movement of food from the stomach into the intestines; used for the treatment of reflux) .3ml, three times daily
Captopril (treats hypertension) 2ml, three times daily
Lasix (commonly used diuretic) 0.5ml, once daily
Prevacid (antacid; treats reflux) 2.5ml, once daily
Aspirin (help prevent blood from clotting) 40mg, once daily


Dr. Law said she could probably be taken off the Lasix, but I guess since she is about to have surgery she might be put right back on. She could do just fine without it right now, though. I will be anxious to see what her meds will look like after surgery; if they will change any.
I am getting a little nervous about going back to Atlanta, but I suppose that is pretty normal. I can't believe it is only two weeks away! I am thankful, though, and I am looking forward to more normal days at home afterward.

Emma Kate loves to look in the mirror. We have her changing table in the bathroom with mirrors all around her. She gets a big kick out of looking at herself! I just love this!