Come What May & Love It

This video is awsome. My cousin has it on her blog. I loved this talk last conference. And as I ponder the uncertainty of Ethan's progress and future I am trying to incorporate this message into my everyday way of life. Come What May, but I WILL strive to love and enjoy every moment of it!

PS: They took Ethan's chest tube out yesterday. . . I am a little nervous. . . I hope his little body has conquered these effusions! Time will tell. . .

Good Day

Ethan has had another good day. The drainage has slowed down a lot, and his chest x-rays are showing no fluid build up. . . We just pray it continues in this direction. The nurses today said they felt he has finally "turned the corner". We will see. I am very grateful for this progress. Now I am trying to focus on nutrition. With less fat being drained out of his chest I am hoping to start seeing some weight gain. He is such a peanut.

Thanks for the great visits this week ladies. . . Much appreciated!

LOL-

Heidi

Baby Steps in the Right Direction

Just wanted to thank everyone for their prayers and love. After a week full of ups and downs things are very stable and Ethan is happy today. Yesterday was a very scary day. He finally got the new chest tube, but it took a near life threatening emergency to happen before he did. The "event" as we call it taught me to appreciate each day even if it is not the progress I want to see. I must also say how thankful I am for the promptings of the spirit, prayers, and a very supportive and positive husband. Because of those Ethan is bright eyed, happy, and even a little pink today. We are hoping for a quiet weekend with continued baby steps in the right direction.
Much love-Heidi

Setbacks

Unfortunately Ethan has not had much progress as of lately. The fluid around his lungs has increased and the drain does not seem to be taking care of it. He has been struggling more with breathing and has developped heart arrythmias. It is hard to see Ethan so uncomfortable. They have switched to a new "nasty" formula that is similar to the old one (low fat). He will probably be getting a new chest tube today. But we are praying to get through this setback soon. He is such a little fighter.

Drainage has slowed down!

The drainage in Ethan's chest tube as slowed down! We are headed in the right direction. We are praying to be able to get the chest tube out by Wednesday if it keeps up at this rate. The extra good news is they are going to keep feeding him. The doctors tell me not to say the "H" word (the one that is the other name for house) They say it is a four letter word on the unit and always delays discharge. I thought that was kind of funny. So I won't use that word, but I am hoping we will be there by early next week!

Love-
Heidi

Hanging In There

Ethan still looks great and his heart is working well. There is much to be grateful for. However, I don't see our hospital stay ending any time soon. After putting in the chest tube and switching to the "special" formula his output from his chest tube has kept going UP! And yes, that is not typical. If it continues to go up through Sunday then the next plan is to stop feeding him. They will restart the feeds through IV lines. This is not what we want to happen but we will do whatever it takes to get that little man better.

The special formula is a low fat formula (because the fluid going into his pleural space around his lungs is fats that are absorbed into the lymph system). So Ethan has also lost weight since he started that formula and is almost back to his birth weight they told me this afternoon. That is a major concern and they are currently trying to increase his calorie intake without adding fats. With his next surgery set to take place in 2 months, he needs to be growing and getting stronger during this period. It is our prayer that he will be able to overcome this chylous effusion in a timely manner. Our older children are constantly asking when we will bring Ethan home and all be together again. I hope soon!

Much Love-Heidi

Suns Game

The Heart Unit had donated tickets and they so kindly gave them to me. I decided I needed some kiddo time and took Alexa and Cannon to the game (Gage went just last week with Grandpa). The kids loved every minute of it. They had a busy day that day and I thought they might not make it to the end. . . but they did! It helped that during the whole 4th quarter Cannon was FLIRTING with a cheerleader that was up in our section. Yes. . .flirting. I could not believe it. He is only 3. It was a glimpse into the teenage years. But in the end it got him a Suns shirt. He was so excited she gave it to him. He quickly unrolled it and had a look of disappointment. When I asked him what was wrong he said "It is daddy's size, not my size." So he let Alexa have it.

It was soooo nice to spend some quality time with them. . . I must admit I am having ICU psychosis. My brain is not working too well. I even busted out in hives. I think it is stress. We just had our one month anniversay on the unit. Ethan looks so good and is acting like a typical newborn baby (minus eating by mouth). He just needs to stop draining chylous fluid from his chest tube and we could be home!!! Easier said than done.

LOL-

Heidi

Update

Ethan is doing great. This is his first time in a bouncy seat! Soooo cute!

Here is a semi-technical explanation of Ethans latest events. . .

He had to get a chest tube on Sunday to drain the fluid that was building up in his chest. This is the second chest tube on that side. Only this time it drained out a milky yellow color. . . The lab tested it and it was 100% positive for lymphocytes. In other words he has a major lymph vessel that is carrying lymph fluid to his heart. Due to the repair/strange anatomy of his heart the lymph vessel cannot drain there and has to find a new route. Until it finds that new route into the heart the lymph backs up and is draining to his space around his right lung (pleural space). This is referred to as a chylous effusion. One of the attempts to minimize this build up is a super expensive formula we have to use for six weeks. . .Yea$$$.

For those of you who knew about my preganancy, Ethan had pleural effussions in utero. The doctors #1 theory is that they were chylous effusions. So this might be something that comes and goes for awhile. We are grateful all his little setbacks are just that, setbacks. His heart is doing wonderful. . . He just needs to get past all these little hiccups and then we can bring him home (until the next Surgery anyway).

Too Good to be True

Ethan is doing great still. . . BUT the fluid has built up a little in his right lung pleural space (sound familiar) and he started working harder at breathing in the middle of the night. So this morning they put some CPAP assistance on his trachea. At least we got to hold him last night and we can still see all of his cute face. I don't even consider this a setback. Yesterday was too good to be true. The little guy was tuckered out from too much progress! He has been resting peacefully today recovering from his night of hard work. . .

Much love-Mom

PS: That is just a humidifier to keep his trache and lungs from drying out. Kind of huge and obnoxious don't ya think. . .

A Terrible Loss

My dear friend Brooke, that I have become aquainted with on the heart unit, said goodbye to her sweet Andie Grace today. She lost her battle with pulmonary hypertension and coarction of the aorta. Please pray for Brooke and her family as they cope with this loss.
Thank you-
Heidi

HUGE Progress

Ethan had a wonderful day today! I was praying for baby steps and we had HUGE leaps. His fever resolved last night, he came completely off the ventilator early today, and is now the happiest and most content baby. He is tolerating milk through his G-tube, loves sucking his pacifier, and is interacting with us so well. We now have the okay to hold him whenever we want. He has a few IV lines still so we can't walk all around just yet, but we can pick him up and hold!!! (I need to be knocking on wood as I am typing all this.)
As you can guess I am so grateful. It finally feels like having a "normal" baby. I don't mean that in a negative way, but in the sense that I can care for him and love on him as I please. I know he is still fragile and has a long ways to go, but I cannot tell you how full my heart is tonight. The last few weeks of struggling have all been WORTH IT! Lets just continue to pray things go in the right direction.
Much love and thanks-
Heidi

Update and B-days

Alexa is 8 years old today! I can't believe it. She is such a tender child. And thankfully she is the opposite of her mother. She is patient and sensitive, musically inclined and talented, and loves to read. She definately is more daddy than mommy. And I love it. She has all the qualities I wish I had. Happy birthday girl!

Ethan's surgery went well. He is so much happier and more comfortable. The best part is seeing his beautiful face. He is so alert and looking around. Unfortunately he has a fever today. They are trying to figure if it is infection or just a post surgery reaction. He also has some fluid around his right lung again. . . Round and round we go! Hopefully it will go away and not get bigger. They will be running some more tests this evening.

All the nurses come in to see him and tell me what a cutie he is. I know I am not a partial judge, but I think I have to agree with them!

All is Well

The surgery went well. Will update more tomorrow.

Procedure Time

Our little Ethan is heading to the Op room today at 5:30 for two quick procedures. He is getting a tracheostomy to help him breath better until the movement comes back in his vocal chords (they are paralyzed in the semi-closed position and it may take months for full movement to recover). He is also getting a G-tube. I will be feeding him directly into his belly. You cannot bottle feed a baby with paralyzed vocal chords. If he were to get milk down the "wrong pipe" then he would not be able to close his chords to protect the milk from getting into his lungs. And lung infection is not what a little heart baby needs!
As you can guess it has been hard to accept these setbacks, but the docs are expecting a full recovery from these side effects. And we will continue to pray for that. These procedures will allow us to take Ethan home in between surgeries. Otherwise we would be stuck here on breathing machines until his chords recover. And as mentioned, that could be a few months. Although I am terrified at the thought of balancing Ethan's care and three other children, it will be so much better to be home as a family! And the Lord has blessed us with an amazing support system!
Much Love-
Greg and Heidi

Quick Update

The ENT doc suprised us and came by last night. Unfortunately the trachea is in worse shape than we hoped. There is still a lot of swelling, so the docs put him on decadron (steroid) to bring down the inflammation. Then they will re-assess in a few days. But it appears that both vocal chords are paralyzed in a semi closed position. Thus his airway is too narrow for him to adaquetely breathe on his own. They keep telling us this is not a permanent problem, but it may take a few months to resolve. If it does not get better when the swelling goes down then Ethan may have to get a tracheostomy. They should be able to remove it by the second surgery though. It was not the news we wanted to hear, but we are grateful there are always 'options' whenever we have a problem. Modern medicine is amazing and our hearts are full of gratitude for how well Ethan is doing. His heart is functioning awsome and he melts are hearts everytime he grabs are fingers and looks us in the eyes. I even held him for over an hour today and he loved it (or at least he acted happy instead of crying non-stop). However he was back to Mr. Irritable by the afternoon :) Pray for the airway!
Love and thanks-
Heidi
PS: Thanks to the cooks, play-date moms, and cleaning crew members who are getting our family through this time! My heart is more grateful than you can imagine.

Frustrated

It has been a rough weekend. Nothing we can't overcome, but some setbacks to say the least. I have mentioned in previous posts that time would tell the side effects from the vascular ring repair (Ethan's whole aorta was wrapped around his esophogus). Well we are starting to find out. Ethan was keeping his oxygen saturations up while they were weaning down his oxygen from the nasal cannula, however he was working harder and harder everytime they lowered it, had increased stridor, and has been very irritable. Finally they ran some blood work and realized he was not doing as well as they thought at exchanging air so they put him on CPAP. That is one step away from being on the ventilator again. It has helped.
An ENT doc came down today to evaluate his trachea and vocal chords. He still has a lot of swelling pushing on his esophogus and trachea. This made it hard to see the chords, but it appears that both of his chords may be partially paralyzed. They could be this way for a few weeks or a few months. The problem is they are obstructing Ethan's airway making it hard for the air to pass, thus he was having to work so hard to breath. The docs are starting additional steroids to get the swelling down and will re-evaluate in a few days. But it looks like are stay is going to be even longer and we may have to take some additional measures to help him with breathing. If the chords are paralyzed they also will not let him start trying to use a bottle. We will have to go home on NG tube feeds! Fun times :)
The other bummer is that Ethan thinks being held is overated! He is so irritable right now from EVERYTHING he has been through that he does better if you just leave him alone. It is hard to see your little guy struggling and not be able to pick him up and comfort him. But he sure is beautiful to look at!
Loves to all-
Heidi

Holding Him Again.

Day by day more lines are being removed from Ethan. The withdrawls are slowly getting under control and the swelling is almost gone. Today the other chest tube, an IV line to his heart, and an arterial line were removed from his little body. Although there are a lot of lines to go, we could finally HOLD him again! What a special time it was. What a gift Ethan is in our life. Everyday is a miracle. Greg brought down the kids today and they got to see and hold Ethan (briefly). It was the first time we were all together as a family since before Surgery.

We have met several other families on the heart unit and have come to love the staff there. It is an amazing place! This is a special experience we are meant to have, and I hope and pray we learn everything the Lord wants us to learn. We also continue to be in awe at the service and prayers that are being offered in our behalf. Thank you.

Love-

Greg and Heidi

Off the Ventilator!

Ethan is off the ventilator! We are so grateful for the progress he has had over the past 24 hours. It started with finally being stable and then the doctors decided it was finally time to wean him off the vent! He has been off of the ventilator for almost 4 hours. I have loved every minute of looking at his beautiful face. He has nasal prongs providing high flow oxygen right now. But that is so much better than the ventilator. They also let us wrap him up in a blanket, his favorite.

Unfortunatley I still cannot hold him due to the heart meds he is on and one of his IV lines still goes directly into his heart. Those need to be gone before Greg or I can hold him. He still has one chest tube in, but they took the left one out today. It's a good day!

The only negative news is Ethan is pretty uncomfortable. In order to wean him off the ventilator they had to wean him off sedation and pain meds to ensure he would not be too groggy to remember to breath. We also cannot hear him cry yet. The vocal chords are irritated from the breathing tube that was in. If it doesn't improve over the next few days we will know there is also temporary paralysis from the surgery.I cannont say thank you enough for your faith, love, and prayers!

Love-

Greg and Heidi

Slow and Steady

We are learning we are on the Lord's time and Ethan's time. After a few setbacks, today has been a quiet day with some baby steps in the right direction. We will take it! They had to put him back on one heart med that he had been off for a few days. But it is the smallest dose possible and it has made a huge difference. His blood pressure has been pretty stable since last night. He has had a few concerning moments which he resolved himself. The surgeon explained that a lot of babies who receive the "Sano shunt" on their heart struggle with fluid balance and blood pressure. That was reassuring to hear. I was starting to think it was an abnormal struggle we were having.

They have started the lasix again. This helps pull the extra fluid and swelling off his body. He needed lots of extra blood and fluid over the weekend. And to keep his pressures up they had to stop the lasix. So he now looks like the PILLSBURY DOUGH BOY! We thought we would snap a picture of him looking all chubby and compare it to what he looks like when his swelling is gone!

The other good news is they have lowered a lot of the ventilator settings. He is doing most of the breathing on his own. His chest is also clearing up. Another step in the right direction. He is also looking and moving around a little more. They had to keep him very sedated during the last couple of days. We pray for a continuation in the right direction. Patience has never been my strongest virtue! The Lord knows what I need to learn.

Much love and gratitude-

Heidi

A Good Night

Just a quick post. I have had some calls of concern. He had a much better night. His saturations and blood pressure were much more stable. He still has had a few dips. They are probably going do the other chest tube soon. I will update tonight. Thanks to all who are concerned and have reached out to us. We feel so blessed as a family for the love and support we receive!

On another note, it is Gage's birthday! Just wanted to note how much I love this kiddo. He is so driven and full of spunk. Gage wants to accomplish anything and everything. Greg and I have a hard time keeping up with him and all his ambition. I love you Gage!

Love-
Heidi

3 Steps Forward, 1 Step Back

The nurses told us the day of surgery that the unwritten rule on the floor is 3 steps forward and one step back. We had our step back! And even though they tell you to plan on it, the news things aren't going in the right direction still makes your heart jump into your throat.Ethan has been unable to keep his oxygenation where he needs it to be since 5am. After trying every measure they could think of (that was not invasive) they decided they needed to place chest tubes to drain his pleural effusions (fluid around his lungs).
Upon placing the first chest tube they had a huge amount of blood come out of it. So much that the doctor called in for back-up. They had a whole team of doctors, nurses, and techs in their running test to make sure they didn't puncture something with the chest tube. They had to transfuse him with blood, plasma, and other fluids. Part of the need for so much fluid is that they have been trying to pull off alot of swelling fluid since surgery and he was actually dehydrated. After 2 hours the final conclusion was the tube was in the right place and there was no active bleeding. He just had that much build up around his lung. It was so stressful they have decided to wait until tomorrow morning to place the chest tube on the other side. Ethan had enough for one day.

I can't say enough about how much love I have for this child. He is an "old soul" if you will. Or shall I say a special spirit. He had to be sedated most of today while they worked on him. . . So I haven't been able to see those beautiful eyes. At least his oxygenation has improved. Hopefully the other chest tube will help even more. Keep the prayers coming. I feel the love of my savior around me and Ethan whenever things are stressful. It is definately a tender mercy that He is letting me know He is there.
Goodnight-
Heidi