Survival Mode

We ended coming home last night around 7:30pm. Got all packed and ready to go around 2pm and hooked Ethan up to all the portable equipment and the darn monitor wasn't reading. Five and a half hours later a new monitor was delivered and we were off.
First Night: 3 hours sleep and I must confess, a husband who was up more than I was!
First Day: My daughter is a new child. . . Just happy mommy is in the house. . .
Two sons who were not so happy. They were begging for attention from Ethan and me. . . By noon Gage told me he hated me and that all I cared about was Ethan. He then went on to complain about his heart being sick the rest of the day and he needed to see the heart doctors :) Oh boy. At least no meds were missed and Ethan is still alive. However I must confess I ripped the Mickey Button out of his stomach and had to insert a new one.
By about 1pm today I was holding Ethan in the recliner wondering if I was going to be able to survive the next few months (or years). I was having feelings of doubt. Right then Alexa came and snuggled with me and Ethan on the recliner. Ethan decided it was time to bust out a couple of "real smiles". I knew then I could do it. . . Tender Mercies!

Going Home Today

We got an override from the boss (Beth thats you), and we are going home today (Saturday)! His xray looked the same and he is doing well. We are just waiting for his central line (IV) to be removed after he gets one last round of meds through it. I must say that we have had a few big accomplishments in this last hospital stay. He has grown well, is breathing better than ever, got his mickey button, and passed a swallow study. That means we can start giving him a bottle.

So far he does not like the bottle. He has sucked his pacifier great this whole time, but has NEVER had any feeds by mouth. He will suck the bottle but doesn't swallow until the formula builds up in the back of his throat. Once he realizes their is formula coming out he stops sucking and glares at me! It will take months to get him to take all his feeds by mouth. First he has to learn to swallow in a more coordinated manner, then he has to learn to enjoy it enough to want to take a large amount at a time. And as soon as we make some progress. . . it will be time for his next surgery and we will have to re introduce the bottle again! Such is life. It just does my heart good to see a bottle in his mouth :)

Thanks to ALL who continue to serve and pray for our family. This is not a short trial we are dealing with and we APPRECIATE the support!
Love-
Heidi

Staying thru the weekend. . . Ughhh*#?/!

Ethan looks great and is acting awsome! I am not too happy. They want to keep us here til Monday! I understand why, but I just wish we were home. The good news is his chest x-ray looks better today (less wet) and so they decided to keep the IV diuretics going one more day and tomorrow we will switch to oral doses. Then they want 3 days of keeping the fluid off on the oral meds before we can go home. That puts us to Sunday and they don't discharge on Sunday. I would LOVE to be home at least 3 weeks before we are back in for the next Surgery. Ethan needs to know what real life is all about. Except it is easier to keep Cannon away from him here :)
Speaking of Cannon. . . he is having way too much fun at his playdates. He has no problem making himself feel right at home. Check him out in this picture at the Wright's house. Doing the dishes in the buff while casually eating grapes!!! HMMMM. Where did he get that from?

No News is Good News

We are still hanging out at the hospital. Ethan looks great. We were hoping to go home tomorrow, BUT it looks like end of the week. They decided to go back on IV diuretics to try and rid that last bit of fluid around his lungs. They have tried it twice before and it didn't work, but maybe the third time will be a charm :) He can go home with that little amount if it doesn't work. That means after the IV is done tomorrow, we have to wait out a few days back on the oral (or in his case G-tube) dose and make sure the fluid is staying off his lungs. I have decided its time to take charge of my life that I have no control over. So I have begun to jog around the hospital and do the stairs. I am not a big exercise person, but there is something for taking time out for yourself. . . Its helps with sanity anyway! And hopefully the fourth baby love handles. . .
Loves-
Heidi

Growing Up

In the words of Cannon "Efin is growin up". It took looking back at some pictures from his first week of life to realize how much he has really grown. Although, he is still a peanut! At birth he was just shy of 6 lbs 5 oz. He is now a whopping 8 lbs. 10 oz.

Just Hanging Out

Ethan is doing well. He has been fever free for almost two days now. They are still playing with his diuretic therapy (meds that make him rid excess fluid from his body - AKA pee). It is so funny. First he was putting on NO weight, now they are all in a tizzy because he is putting on TOO MUCH weight! And that is our life. Round and round we go, when it will stop nobody knows :)
The good news is that much of his weight gain is "real weight". They just think he retaining a little too much fluid. So Ethan should have the weight gain needed for the second surgery by next month. Their current theory is he is retaining fluid inside his lungs too, not just in his pleural spaces (wet lungs) and maybe that is why he breathes such short, rapid breathes. All I know is we don't want wet lungs going into surgery. . . so hopefully we get it balanced out soon so we can go home.
I have come to terms that it may be several months before we can live a somewhat "normal" life. That thought overwhelms me at times. . . but I know we can handle it because of all of you. The prayers and service are amazing and truly appreciated. Thank you ALL!
LOL-
Greg & Heidi
PS: Thanks Bri and girlies for the dinner and night out! It was much needed.

Hospital Update

Ethan is doing well. . . but still in the hospital. His fever seems to have finally passed however, he continues to breathe quite fast, but that has always been his norm. We would be coming home soon but now there is a new concern. The Sano shunt he had placed on his heart during surgery is starting to narrow where it connects to the pulmonary arteries. It appears to be scar tissue build up. This shunt tends to do this and that risk was explained to us day of surgery. At that time it was the best choice to help preserve his pulmonary valve. Now that it is narrowing they are planning on doing an early Glenn (second heart surgery) in one month (about mid May).
Due to this the doctors/surgeons have decided to keep Ethan in the hospital until next week. They want to fine tune his medications and feedings to maximize his growth. They want him to gain at least two pounds in the next month. Hmmmmm. Its possible.
We are also praying his lungs will be ready enough in a month for this surgery. The lungs are most likely not going to have a low enough pressure needed for surgery,but with the help of modern medicine they should be able to get them close enough. So another big concern is that his lungs will be able to tolerate the procedure. I know this is too much info for most. . . but the bottom line is we would love continued prayers in Ethans behalf. Especially for growth and his lungs to be strengthened.
Love and Thanks-
Heidi

Back in the hospital

After finally figuring out a home routine (sort of) Ethan is back in the hospital. He was retaining too much fluid, breathing too fast (and hard), and got a low grade fever. His oxygenation was also getting a little to low. Due to all of these items they wanted him readmitted. Most of his tests have come back with good results. They are not sure what is causing the fever, but the fever increased today to 101.5, so now they are re-running all the tests just to be safe. The fluid on his lungs has not increased. . . That is a relief. His heart also appears to be working well. His red blood cells are a little low so they have decided to give him a blood transfusion tonight and that should help him oxygenate better. They have also put him on some ventilator assistance to try and slow down his breathing. This sounds like a lot (and it is) but he looks great. We hope once he gets through this fever he will be able to come home. . . but we know Ethan is unpredictable! He likes to get every little side effect out there! Please pray for a quick recovery.
Lots of Love-
Heidi

Sweet Chaos

Ethan is doing great. He has been fabulous. Slowly but surely our room (the New NICU) is getting put together. Once it is presentable I will post a picture for those of you that don't believe me when I say it is a hospital room at home. But at least it is at HOME. We did have to run to the hospital at 10pm last night. His g-tube (feeding tube) was clogged. Our home health nurse that was there helping us get situated tried to unclog it for an hour. Then Greg and I tried. After he had already missed a whole feed and meds were due we had to go in. The heart unit is great. They just had us come up and they popped a NG tube in his nose, gave his meds, and started his feeds and we went home. Tomorrow we will see the doc and get the G-tube changed.
Someone asked me today what was easier. . . Hospital life or home life? So far hospital life. Every other night I got a least a solid block of sleep, and someone else (the nurses) would do his basic care if I was too tired! Ethans care is a 24/7 job. Greg is soooo helpful, but I miss the nurses :)

Hopefully life will be much easier after the next surgery. . . hopefully then they will take his trache out. That would eliminate a lot of his equipment and a lot of my stress. Not to mention I am dying to hear his voice. When ever I think I can't do it I just take a minute to look at that sweet baby and thank the Lord for him. He has taught me so much. I used to joke that I was waiting for Greg and I to have a major trial because life has been too good to us. I guess the Lord was listening and decided it was our time. Thanks to ALL of you who are getting us through this time. My gratitude cannot be expressed enough. Our support is immense.
Thank you-
Heidi

The Best News

Ethan is HOME!!!!! I will update later. . . I am busy figuring out our little mini NICU set-up!

Bad News and Great News

The bad news is we are not going home YET. It looks like Monday. Thursday morning Ethan had developped quite a bit of fluid in his right pleural space. It was back! He was breathing a bit harder, but it wasn't bothering him as much as usual. They put him on IV diuretics for 24 hours and this morning it was GONE! This is the great news. Ethan has never been able to get rid of an effusion on his own. They always would try diuretics prior to a new chest tube and it never worked before. But this time it did. His little body is learning to compensate better and he is managing the problem. To me that is GREAT news. I was expecting a chest tube this morning. I was shocked to hear the good news. Now we need another day or two with no fluid build up and we can go Monday morning. I was begging for Sunday but the policy around here is that they don't discharge such "complex" babies on weekends.
Whether it happens Monday or not, we are close. . . He has overcome soooo much in his first 6 weeks of life.
Love and Thanks-
Heidi

Another good day

Ethan had his chest tube out Monday. . . and there has been no fluid build up yet. I have been waiting for the bad news that the fluid is building and it has not come!!! They seem to have balanced his feeds well also. He has not been spitting up and vomitting as much. So the point in all this is that they are saying the "H" word again. The plan is Friday morning. As much as I want to be together again as a family, I would be lying if I didn't admit the thought of taking him home gives me serious anxiety! I am praying that faith will conquer my fear right now. I am also praying, of course, that no setbacks occur in the next 48 hours :)
Much love-
Heidi
PS: Ethan loves to hold his humidifier when he sleeps. Not quite as endearing as a blankie, but cute none the less!