Ethan James - Our baby's battle with CHD

Get Ready

2011-12-16T00:32:00.002-06:00

Ok...it's time to dust off the old blog! Strep test negative...game on for surgery next week. This is not the way i would have planned to spend Christmas break with my kids, but I'm glad that we have cleared one more hurdle to get Ethan into the OR! We go in for preop next Tuesday and if we are cleared will have Fontan on Wednesday. Doesn't seem real yet...my brain is still buzzing. Please keep him in your prayers. We have started a facebook group called Prayers for Ethan. I'll be updating there and here next week during and after surgery.

Fontan?

2011-12-13T12:54:00.000-06:00

Family picture. L-R. Mom, Nolan, Natalie, Elise, Craig, Daddy and Ethan

Ethan being cute on the fireplace.

So...we were supposed to have had this over with by now. By now Ethan was supposed to be home, doing well, and life back to normal....or as normal as it gets around here. but November 16th came and went with a wheezy cough and two lung transplants that bumped us from surgery. Reschedule for Dec 15th is not going to happen due to c-diff. C-diff that could have been avoided had big brother's school sanitized properly after an outbreak in November. But that's a whole other story that I really don't want to get into. Suffice it to say, the school has now been sanitized and I probably can't ever go back there. LOL We have not been rescheduled for the third time for Dec. 21st. I'm grateful that they can work us in but now I really don't have a clue if he'll be able to make it out of ICU for Christmas. In the grand scheme of things I know it is a little thing. But Christmas is a time for families to be together and celebrate...not for laying in the hospital or watching your child try to cope with a pain level that I'll hopefully never have to deal with. Fast forward to this morning. We're back in the pediatrician's office because Ethan has a runny nose and a sore throat. Rapid strep came back positive and we can't treat it because we don't know if it's live bacteria or dead. If it's dead we would bump ourselves out of surgery if we treated it. If it's live we will know when the culture comes back on Thursday. We will have to treat it (of course) and we will have to be rescheduled for January. As much as I don't want to be in the hospital for Christmas I DO NOT want to be rescheduled. Ethan's 02 is trending lower and I don't want to have to give him oxygen at home so that he can make it to surgery without neurological deficits. I just want it to be over. The hardest part right now is not having people understand how frustrating it is to be constantly bumped and how angry you get at things that normally wouldn't bother you. I'm trying to stay calm and level for my kids but some days it is an epic fail.

Fontan news

2011-09-17T23:19:00.000-05:00

Well...the dreaded word was finally uttered by a surgeon to us this week. Fontan...sounds like something fun...like something you would get by lounging in the summertime...instead of the surgery I've been dreading and hoping for since the day Ethan was born. Dreading it for obvious reasons...will he survive? Will his little brain be protected during the surgery enough that he won't lose his beautiful personality and sweet smile. And yet I have been looking forward to it only because if he has to have it it means that he is still alive! We were given so little hope that Ethan would survive the first moments of his life that, to me, making it to the age where Fontan would be a possibility seems unreal! We will hear next week a definitive date for his surgery. We are shooting for the beginning of November. The surgery will take all day. Dr. Fraser will try to see if there is any way that he can make a four chamber heart for Ethan. He is not hopeful of being able to do this. We are praying that he will be able to! It would mean that his life expectancy would surpass mine! That is something that we have not dared to hope for! If Ethan's heart will not be able to be made into a normal, four chambered one, then Dr. Fraser will proceed with the Fontan as planned. The leaky common valve will also have to be addressed at this time. This is going to be a long few months. We are officially on germ lockdown...meaning Ethan doesn't go anywhere...until after surgery/recovery. We are also extremely picky about who can come visit. My older kiddos will have to use hand sanitizer as they get in the car from school, strip school clothes when they come home...and we are going to have to turn into clean freaks! Elise is coming down with a cold so she is staying away from her little brother. Ethan also has some congestion that we are aggressively fighting. His lungs must be clear in the 6 weeks leading up to surgery or we will get bumped back to in the middle of the holidays. I do not want to have him in the hospital over Christmas.

catching up...

2011-08-26T23:41:00.000-05:00

Well...dental restorations went well..filled 3 cavities and put on one cap. Ethan did great and was a champ...like always. On May 26 Ethan had another heart cath. Dr. Ing was able to balloon his existing stent to 10mm which is fabulous! Ethan's o2 continues to be in the upper 70's so that is landing us deep in the heart of Fontan-ville. September 12 is his next heart check up in Houston. Full workup including echo that morning...then we're off to a surgery consult with Dr. Fraser that afternoon. HOpefully we will have a surgery date when we leave the hospital. I am ready to have this over with. But I don't want it to come too soon because heart surgery always carries the risk that when you hand your baby to the anasthesiologist it will be the last time you see him.

Ethan's third birthday was a success and I'm sorry I don't have any pictures uploaded! We reserved a pavillion at the splash pad at one of the local parks and invited Ethan's friends from church that he doesn't get to know too well because he is on germ lockdown so much. We were very grateful to have all of them with us that day to celebrate another year of Ethan's life.

Right now we are just trying to keep Ethan healthy. We know that he will get bumped for surgery if he has any kind of respiratory issues within 6 weeks of surgery. They want his lungs nice and clear and the pressures low so they can get him off the vent as soon as surgery is over.

On a non-Ethan note, we are closing on a house this week. It has been a long time coming and I can't tell you how many prayers are being answered right now. We put a new house on hold four years ago so we could handle Ethan's medical care. We are a family of 7 living in 917 square feet, with one bathroom...and most importantly, no dishwasher...the new house is 2400 square feet, 4 bedrooms, 3 baths, a dishwasher..and miraculously in our budget! I am so grateful for this blessing. As always keep us in your prayers. We need a healthy Ethan this Fall and Winter...

Dental Restorations

2011-05-09T10:18:00.000-05:00

Well, today I am getting packed for an overnighter in Houston. I so wish it was for something fun! We have to report to day surgery tomorrow at 6 am for Ethan's IV sedation for his dental restorations. They are either going to cap or pull his molar that is causing him so many issues. This is the last roadblock before the cath lab. We are tentatively scheduled for May 31 but it is possible that they will move him up depending on how tomorrow goes and availability.

I usually try to stay very positive and upbeat on the blog...but I just don't want to do this. I don't want to have to go tomorrow...I don't want to take him to the cath lab...and mostly I don't want to have a surgeon cut him open later this year!!! I am trying (and mostly failing) to keep my emotions in check.

For today I am doing laundry and getting ready to go. Pandora radio is saving me. Be still my soul just came on and it helps. I just want a calm life. But if it were not hard, would I know the calm when it came. Please keep Ethan in your prayers tomorrow. He has always done really well with sedation and I would really like for that trend to continue!

Getting ready...

2011-04-30T21:42:00.000-05:00

Since the last time I have posted we have had many many many check ups, several scares that included midnight drives to Houston, and tons of prayer. All of the check ups have led to one thing. Another heart cath. Ethan's o2 numbers are sticking around 77. He is constantly huffing and puffing to catch his breath when he is up walking/running around. He's scaring me to death but he's always done that! Day after tomorrow we go for a dental check up. As soon as he is dentally cleared, we call his heart team to see if they can get him into the cath lab before May 31, which is when he is currently scheduled. The F word (Fontan, but I got you thinkin didn't I) will happen sometime in the next 6 months depending on the results of the cath. His one heart valve is very very leaky and it's keeping him from being able to keep up like he was. BUT...he has learned to hit a ball off of the t and can play catch with his daddy. For these two things we are especially grateful. Tomorrow is the first Sunday of the month. In our church, we fast on the first Sunday for something that we are in need of, or to give thanks, or for another reason as determined individually. As always, Ethan will be the center of ours. He is an amazing little person and we pray that he continues to thrive.

Summer in Review

2010-09-05T20:45:00.005-05:00

Now that I've had a couple of weeks to come down off of the summer I have decided not to give you the normal "sorry I haven't written in a while" mess and just come on out with it's been too busy to keep up! ;) As you can see from the picture, Ethan adores his little sister. The first picture is his first time to meet and hold her when she was just two hours old. The second was taken outside of our church on August 1st on her blessing day.

June was a whirlwind of Zoo camp, new dance class schedules, two birthdays, a trip to Austin for Nolan's specialists, etc that ended with a trip to Schlitterbahn Galveston for some fun in the sun (or as much fun as you can have in a double floaty two weeks before having a baby with an almost two year old freaking out because the waves are too high in the wave pool). It was actually really fun! The last thing in June was a check up with Ethan's cardiologist. He's doing really well but he's getting winded when he is playing a lot faster. And his 02 numbers are starting to trend down. When he first had his glenn he was 85...now he usually is around 78-81. When his numbers are consistently below 75 his Fontan will be scheduled. With his current rate of decline we will be looking at surgery sometime int he next 18 months. This is where you tell me to breath and that it will be ok...I'm really scared about his Fontan...

July was the most fun I think. The 4th was spent with family and ended with watching fireworks over the pond behind the zoo. Then it seems like no time passed until the 13th when sweet baby Natalie arrived by c-section. She is a doll. Ethan has been so good with her. He always wants her to have her suckie (pacifier) even when she doesn't want it. Some good friends came and gave me a huge helping break for the first week home as Richard had to work that week because almost all of his vacation days were spent on Ethan's procedures earlier in the Spring. Sadly, that's all I can remember of July because recovering from a section with 5 kids and no sleep leaves your memory very fuzzy. Suffice it to say that July was good.

August was a whirlwind of school clothes shopping and school supply shopping and meet the teachers (all three campuses in two hours...why they scheduled them all at one time is beyond me!). Everyone has adjusted to the routine of school fairly well even if the application of school rules is a little beyond a couple of them...

Ethan doesn't go back for another check up until November. His numbers have been above 80 for the most part int he last week so I'm going to keep my fingers crossed that he will continue to be unripe for surgery. I'm not ready for it. He just gets so tired so fast. And it is taking him longer to recover his breath. When he gets tired it can take days for him to adjust. School starting hit him pretty hard. He enjoys being a semi-only child for a few hours each day, but getting up earlier, even though he's going to bed earlier, is making him more and more tired. In a way I wish his appointment was tomorrow so I would have some answers, but all in all I only want to hear about good news right now.

Cath follow up

2010-04-22T12:17:00.003-05:00

Finally had Ethan's cath follow-up with his surgeon yesterday. We got chest x-rays, echocardiogram and EKG...all came out fine. He has good flow over his stint and his saturations are level. He's now staying between 78-82...just going to be his new baseline...it's dropping slightly by a few numbers from where he was after his Glenn surgery, but that is to be expected as he grows. Those saturation numbers will let us know when his body is ready for his Fontan surgery. We will have to go back every so often as Ethan grows to open his stint further and have that artery grow with him...it just doesn't do it on it's own! So, we're going to become very familiar with Cath procedures and Dr. Ing over the next few years and for the rest of Ethan's life...

We'll meet with Dr. Altman, Ethan's cardiologist, on June 25th and repeat every procedure that we had yesterday to make sure that everything is still going well. We're going to have to baby his heart until the next surgery...basically keep a very close eye on his saturations and activity level. I'm very grateful that his next visit is at the end of June because Ethan's little sister is scheduled to arrive by c-section on either July 13th, or July 20th depending on her growth.

As always, thank you for your support and prayers on this and every step of Ethan's journey!

MRI/Cath update

2010-03-12T19:10:00.002-06:00

It's been too long since I updated. Things have been busy getting back into the home schedule and getting my older kiddo's nerves calmed down after the MRI, emergency hospital admission, and Cath. Everyone is settling down and things are running as smoothly as you would expect with the stress level. Ethan got to come home the day after his cath but through a comedy of errors (that's the nice way of putting it) we weren't able to get him into echocardiography. So he went home without one. His second x-ray came in beautifully and he is doing well. We did find out when we talked with his cath surgeon that it wasn't just his pulmonary artery that is undersized. HIs whole right lung and all the arteries leading to it are very undersized. This means we have a brand new diagnosis of hypoplastic right lung to add to his already two line long heart diagnosis. This explains why his 02 desaturates with exertion. Now that he has his stent he is slowly getting faster about pinking up for us when he sits down. In the past few days he has started to sit down when he is gasping instead of just keeping on. He's learning his limits. Which makes me happy and sad at the same time. No 19 month old should have to limit his activity. We'll just have to keep a close eye on him like we have done since the day he was born to watch for even small changes in his saturations or his activity. There is really nothing else they can do other than hope that the stint will encourage that lung to grow more now that it has better blood flow. We're now one step closer to his Fontan surgery, but have also staved it off because of the bandaid that we just got in the cath lab. I'm so grateful that he hasn't had to have his Fontan early as his chance of survival at this point is just flat scary. I am also very grateful for the prayers and well wishes that I have received through my internet connections. I couldn't do this without my Heavely Father and you!

Done!!!

2010-03-03T08:52:00.003-06:00

It got too busy to update last night so I'll do my best to remember everything this morning! The artery ballooned open beautifully...and then it went right back to how small it was before...so Ethan has a brand new stint in the right pulmonary artery. I even have before and after pictures that I will have to post when i can scan them in at home. He came out of anaesthesia really well...minimal fussing and very thirsty. He's swollen because of the IV fluids they pumped him full of and his kidneys are releasing the fluid with a single dose of lasix. We held him in the recovery bay for two hours and then got moved downstairs to our home away from home, 15th floor of West Tower. His pressure bandage was removed a little after one this morning and he finally slept soundly at 4. they came in a little while ago for another chest x-ray and we are waiting for those results now. He will have an echo cardiogram and be started back on his aspirin (which is his only heart medication currently) before we are discharged later today. Hopefully I will be able to update a little later after we know more. For right now we are grateful that yesterday is over and that he is doing so well. Thanks for all the prayers and well wishes you guys!!!

Balloon time!

2010-03-02T18:40:00.002-06:00

Got the update call a few minutes ago..They are now attempting to balloon his pulmonary artery...we are hoping that the artery responds and doesnt' shrink back too small after the balloon is removed. If it shrinks too much they will place a stint. We are starting hour 4 for surgery now...but should have another update within the hour...

Heart Cath...Finally!!!

2010-03-02T18:11:00.002-06:00

We arrived at the hospital this morning at around 8. We left Lufkin at 5. We were back, checked in and in the holding bay for Ethan's heart cath at 9. He was supposed to have his cath around 10. They finally took him to the back for his cath at 3:15 this afternoon. That was a long long wait. He was so good waiting! He played with toys and didn't complain once even though I know he was starving. He hasn't eaten anything since 8:00 last night! At 5:10 we got the update that he has a cath in the femoral artery in one leg, a sheath in the femoral vein in the same leg, and a cath in his coratid (spelling) artery in his neck so they have access to all areas of his heart...I'm thinking they had to come at it from both angles because of his PA band but I will confirm this. Thank you for your prayers for Ethan! Please continue them! And also please add the little girl that was case' # this morning. They had to do twice as much in her cath as they had planned and she is back in CVICU....not a fun place to be. More to come soon...

Cath on Tuesday

2010-02-28T14:02:00.002-06:00

Well..Ethan desatted down to the low seventies on the 26th so we were admitted for observation overnight. This also sped up our next step...which is thank goodness a cath instead of open heart...to next Tuesday. They will balloon and/or stent open his pulmonary artery. They will also take care of any little connections that his body has made to try to get to normal...which Ethan's heart will never be...more updates when I know more...Should be getting a call in the next 24 hours for specifics on the time and prodcedure for getting to the hospital...

MRI results

2010-02-26T09:25:00.002-06:00

We got the MRI results back yesterday. Not so good news. Ethan doesn't have the scar tissue obstructing his right branching pulmonary artery. The artery itself is narrowed for a length causing about 10% of the blood flow to go to his right lung and 90% to his left instead of a 50/50 mix that is normal. this issue will have to be addressed in the next few months and I am terrified. His inferior vena cava and liver veins are undersized and we were told at his first surgery that he would need to be 4 or 5 years old before they would be able to successfully complete a fontan surgery. If there is nothing that the cath lab can do to bur Ethan some more time then that fontan will have to be moved up considerably making it's chance of success go down dramatically. Please continue your personal prayers for Ethan as well as calling any prayer groups that you may belong to. If you are LDS, please place his name on your local temple prayer roll. I've seen miracles. I would like another one.

MRI schedule

2010-01-27T16:54:00.003-06:00

Well...I am a little disappointed. The MRI isn't until February 18th...three weeks from tomorrow!!! I'm ready for it to be over and done and am very frustrated!!! BUT! I'm trying to remember that it's not my timeline that matters. If there is a cancellation between now and then that we get enough notice on we will do it. It is highly unlikely due to the fact that we live almost three hours away and he has to stop solids/milk at midnight and clear liquids at least two hours before the preliminary check in...which is usually 1 1/2 hours before the MRI. So...on February 18th, we stop solidsand milk at midnight, clears at 8:30, check in at 10:30, MRI at noon and hopefully get some much needed answers and get to come home that evening...

Sedated Echo

2010-01-27T12:38:00.002-06:00

Well...it's over...the echo at least. We drove to Houston yesterday with a starving Ethan for his echo. He did really well with the sedation this time so we are relieved at that point. The type of Echo his cardio wanted required an IV that we tried for but were never able to get. His PA band is open but has low pressure going through it so there is an obstruction farther "down the line" as Dr. Altman puts it. The major suspect is his pulmonary artery that goes to his right lung. If you have been keeping up with Ethan you know that his first surgery required the surgeon to disconnect the pulmonary artery from his right lung, untangle it and his common pulmonary vein, and then reconnect the lung to the artery. The suspected diagnosis at this point is scar tissue buildup that is lowering the amount of flow to his right lung. Which would cause his symptoms of short breath during activity and being generally a darker blue than his normal is. Our next step is an MRI as soon as they can schedule it. If the MRI confirms scar tissue in the pulmonary artery, we will be sent to the cath lab to have that artery ballooned open at the scar. As scared as I am for this, I'll take it over open heart surgery any day. Please continue to keep us in your prayers as the stress is taking it's toll on everyone. Ethan did really well yesterday and we know that he will continue to amaze us all!

Waiting

2010-01-13T16:11:00.002-06:00

First and foremost I would like to say that we have had some wonderful news with little bean...the nuchal cord was nice and thin and things look perfect with him/her (we're still thinking her btw...).

Now on to Ethan. We arrived for his echo and waiting for a few minutes and were taken back. He hated every minute of it. The tech was a newbie and couldn't get good shots of his pulmonary vein return or his Glenn, so he called in his supervisor. He couldn't get a good shot either because by that time Ethan had had enough. We got him calmed back down and went across the hall to cardiology to see Dr. Altman. Mom took him for his x-ray because I can't while pregnant...his lungs look fabulous. His echo was pointless because the stuff we monitor was thrown out because Ethan was upset and wiggly. Ethan has been panting while active and sweaty after light activity, so that concerns his cardiologist and me. It would seem that his PA band may be too tight and messing with his lungs. So we are back to Houston on Jan 26th for a sedated echo to check his band (regulates blood flow to his lungs) and his vein return. If something is going on with either of these we will most likely end up in the cath lab the next day. We once again need your prayers for our sweet boy. We don't want to go to the cath lab!!! They also did a blood count and think that even though his red blood count is adequate, the cells are large so we need some iron supplementation. Also, a part of his white count was up (can't remember the technical name) that may indicate an allergy. So our instructions for the next two weeks:

1. Keep a daily journal of his 02 sats (twice daily and after activity if panting)
2. Iron supplement to see if that will help his body carry oxygen more efficiently
3. Get to an allergist for testing to see if he has an allergy that would cause him slight breathing distress.
4. Not freak out

1-3 are under control...
4 comes and goes...

We are putting our faith in our Father in Heaven. We have been through this and Know that He has everything under control. Ethan is going to be on this Earth exactly as long as he is supposed to...

Testing Moved

2010-01-03T09:23:00.002-06:00

Tesing has been moved to January 11th in Houston with Dr. Kirshon. Feels a little repetitive going to him again but we hope that he will give us good news this time! Ethan continues to thrive and other than being sick for most of Christmas break he is well! He is turning a little bluer around the mouth than I'd like when he is up walking around and it takes him a little longer to get over it so I'll be bringing that up when he has his Echo and Cardiology appointment on, you guessed it, January 11th. We have a full day of appointments...Kirshon at 10, Echo at 12:15, Chest x-rays, ekg and Dr. Altman at 1:30. Craziness!!!

Other news that is blogworthy is Nolan. He went to see a team of DAN (Defeat Autism Now) Dr's in Austin and is improving daily. His speech has blossomed, his social skills are coming closer to a two year old instead of a one year old (he's 3 1/2), and his personality is blooming! All with taking Gluten out of his diet. He showed an intolerance for wheat in his allergy testing last year so I'm hoping that this is the kingpin to getting his little body figured out. He has started a multivitamin from DAN, and will add calcium/magnesium, fish oil, and vitamin c supplements over then next few weeks.

Good News!

2009-12-07T12:23:00.002-06:00

Ethan continues to do well and is walking and talking better everyday! If you didn't know that he had heart issues you would think he was a normal kiddo! Which is the best news this momma could hear! We got a little surprise a few days ago that still has us reeling. Ethan is going to be a big brother! We are excited, nervous...any emotion you can feel I have felt it in the last week. We are having nuchal cord translucency testing done on the 28th. It is an early indicator for Down's syndrome and Trisomy 18. If the nuchal cord is thicker than normal at 11 weeks gestation and the amnio comes back chromosomally normal, it will greatly up our chance of having another heart baby. We are again nervous about our last little addition (and yes, this is our last) and would appreciate your prayers on our behalf.

Quick update

2009-11-22T10:58:00.002-06:00

yes I know I'm a slacker.. It's been months!!! His cardio visit in September was amazing. He did well with his Echo and x-ray. No problems. He had a late night ER visit in September that turned out to be nothing but a cold. No problems since then. He is WALKING! It is so cute! He has this little Frankenstein waddle going on that just turns you to butter. He is also expanding his vocabulary to include da da and nuh nuh ( another) when he wants a cracker. He also says kah kah for cracker. I'm sure he's a genious!!! We don't go back to cardiology until January. We are so pleased that he can go so long between appointments!

School has started...bring on the germs!!!

2009-09-11T09:54:00.002-05:00

Well, we are finishing the third week of school here and Elise and Craig are doing great with their classes. Fourth grade and Kindergarten have begun...and with that comes a lot more germs. Ethan had strep throat the first week of school which antibiotics quickly got rid of. The third week of school brought us a stomach virus. He was given IV fluids to combat dehydration for two days and then his face got really puffy and his O2 sats fell a little bit. So we were off to Texas Children's again. Not admitted this time just a really late night. We didn't get home from the ER until after 4am. I guess that would be one of the down sides to living 2 1/2 hours away from the hospital. Ethan is doing well. His kidneys have kicked into high gear and have gotten rid of the excess fluid. He is still sleeping more than normal, but is doing great.

He isn't walking yet. This is a little concerning but he is still standing on his own quite a bit, so we are just waiting for his little muscles to get ready to let go! His next cardio appointment is Monday the 14th, so I will update more then...

Happy Birthday!!!

2009-07-18T08:54:00.004-05:00

This is my favorite one...
I love the cake on his foot...you can barely see his scar!!!

I've named this one sweet reflection

He wasn't too sure about the cake until he tasted it!

Thank you Sharon for the poem, the photos...for being a friend!!!

Ethan had a wonderful birthday. We went to the park where there is a spray and play pad and let the kiddos have a blast. When everyone was full of barbeque, we let Ethan have at his cake. I'll post pictures soon...they're adorable! I do have a few pictures that my friend Sharon Swan took. She is amazing and would love for anyone else to use her as thier photographer...

Emotions ran very high today but they were the perfect adtidote to the past year. I was overwhelmed with gratefulness as I watched about 60 of our closest friends and family come out to support Ethan as they have every day. We have been lifted by their faith and prayers and continue to be.

On to Ethan news. He can stand up for a few seconds at a time unassisted. His tooth count is up to 10 with two brand new molars making their debut! He continues to laugh and be just a laid back little guy. He's the happiest baby I know. He will point his little finger and say dat...he's very curious about what things are.

To my online friends...thank you so much for your prayers and support this year.

Wow..we made it!

June update...catching up

2009-07-09T10:20:00.002-05:00

Ethan has had a really busy month and has kept us on our toes. Our 10th wedding anniversary was June 5th. Elise's big dance recital with 4 costumes was the evening of June 5th. And Ethan caught a virus and was kangaroo crew'ed to Houston at 6 am on June 5th. It was a very busy day. His temp was 101.9 taken under the arm, his heart rate was 192, and his 02 sats were at 76. As soon as they gave him some IV fluids everything regulated, but since he is aspleenic we had to make sure the temp wasn't from a bacterial infection. All tests came back negative so we were able to go home two days later. My mom stayed with Ethan on June 5th so I could be with Elise for her dance recital and Richard and I made a trip to Houston last weekend to attend the temple for our anniversary. So, all is right with the world now! ;0)

Ethan is continuing to amaze us. He is pulling up to stand and even let go day before yesterday to stand up by himself for a few minutes. He babbles and sometimes if he wants and the mood strikes him, he will wave goodbye. He has really enjoyed the pool in my parent's backyard and smiles so big when he gets in.

The most important thing that I can think of that is coming up soon is Ethan's birthday! He will turn one on July 17th and we are asking all of our friends who helped us through this past year with your prayers and positive thinking to join us at kiwanis Park in Lufkin at 6pm for his birthday party...Don't bring him anything, you've already given us the greatest gift of your prayers and support! If you feel you must do something make a donation to It's My Heart by visiting itsmyheart.org They are a wonderful organization!!! If you are able to make it please leave a message here or email me at averpen@yahoo.com. We would love love love to have you there!!!

I'll update again soon!

Many good things...

2009-06-01T21:18:00.002-05:00

Last weekend Ethan had the honor of attending a friend's first birthday. Abby is an amazing little girl that we met while Ethan was recovering from his surgery last October. She has many issues with her heart and has had three open heart surgeries. She spent 7 months out of her first year in the hospital. She slept through her first Christmas and New Years...she has struggled every day to just be a little girl. Her parents are amazing. They have struggled, prayed, laughed, and cried with Abby every step of her journey. I feel blessed to know this sweet family and look forward to that day when we are all before the Lord and Ethan and Abby both have hearts that are perfect. When they can run and not be weary...

Happy Birthday Abby!!!

Johnny continues to remain stable. Due to the complexity of his heart defect a transplant is currently his only option. His parents are taking it one day at a time. I will not ask you to pray for him to receive a heart because I cannot ask you to pray for another child to die, but I am asking that if another child is going to leave this earth due to the Plan of our Father in Heaven, that Johnny be allowed to receive his heart. There is a subtle difference there. Heart transplants are painful on both the giving and receiving ends. I am not looking forward to that and hope that technology keeps progressing in such a way that Ethan will not have to be on that list when his Fontan ultimately fails...as they all do... I am asking for prayers for Johnny's family as they navigate the difficult journey that has been placed before them...they too are a very special family.

On to Ethan news...he is doing amazing. His heart no longer races when he is active so hsi circulation has caught up with his activity level. I equate it with someone beginning a running program. the first few times you run you get worn out a lot faster but evenutally you can run miles without stopping...it is the same with Ethan...he can now pull up to his feet and stand holding on to something and not work his heart too hard...we are very blessed. He has also finally decided that solids are a must instead of a treat...he gets very put out with me if I don't feed him when he decides he is hungry...He was fascinated with Abby and her ankle bracelet...he thought it was the most beautiful thing he had ever seen...I can't wait for them to go to prom!!! ;0)

Well...that's all for now...thank you for all your support and prayers...

Echo appointment

2009-05-20T15:34:00.002-05:00

Ethan had his sedated echo day before yesterday and he couldn't be doing better. His glenn looks good, his PA band is not too tight or too loose, and he has "trivial" amounts of leakage in his valves. So...no more enalapril!!! We are down to amoxil to keep from getting a bacterial infection and aspirin...

Ethan hated the Chloral Hydrate. He only slept for about 45 minutes on it and then woke up angry. After an hour of fussy screaming he had been cleared to go home and seen Dr. Altman that couldn't be more pleased...he fell back asleep around 230 and didn't wake up for three hours! He's back to his normal growling self and can stand without momma's help against a chair without falling down...

Also...a friend of Ethan's was born today. Welcome to the world Johnny...he has ethan's diagnosis along with a few more complications but seems to be doing well. Visit him on carepages at Johnny's Way...

We don't have another cardiology check up until September 14th....we will have chest x-rays and an EKG and an echo if needed...

I can talk!!!

2009-05-11T20:17:00.002-05:00

Ethan can say da da...ma ma...and by by by by by by...he has tried to wave and is being absolutely adorable...

We are off of enalapril for the time being. Dr. Altman wants to see how his heart valve is handling being off it for his echo next week. I'm getting antsy...all you heart parents will completely understand how unsettling it is to go in for a check up appointment. Everything seems to be going well, but we won't know for sure until we get that echo next week. This will also be his fist sedated echo. That has me nervous...flashbacks of surgery... He has had a few episodes of his hands and feet turning light blue but they have coincided with activity. I'll be glad to have this appointment over and done and be back home. I'm taking a packed bag just in case...I'm a little paranoid. I'll update after our appointment!!!

April has been good!

2009-04-25T09:12:00.007-05:00

Ethan pulling up on his roller ball...he's on his knees can you believe it!!!

Baby's First Easter

He loved dying Easter eggs...you can barely see his scar!!!

Hunting Easter eggs with Momma

Easter eggs are yummy

I will eat the penguin...I will eat the penguin!!!

Ethan loved the Children's Museum over Spring Break

As you can see, Ethan is doing really well and has a beautiful smile that lights up his whole face. He is a joy to be around and people are drawn to him. We can't go anywhere without someone coming up and telling us how wonderful he is...we agree!!! Seriously it is a wonderful opportunity to let people know about CHD and introducing the gospel to them by explaining how Heavenly Father has blessed us and...so two plusses in my book.

Last weekend was a little scary for me. Ethan is learning how to pull up and he is crawling everywhere. His little body hasn't had time to adjust to the new activity level and it made his heart have to work a little too hard. He was sweating in his sleep and his heart was racing so that calls for a call to Dr. Altman to find out if we need to come in for a check. After talking to her on the phone we decided that he was okay to wait until his echo in the 18th unless he has another problem. After a week of eagle eye watching I am relaxing a little bit. So...until something else happens I'm trying to enjoy my family and watch the amazing things that Ethan is doing. The tooth count is up to 8. He is getting into everything. He continually amazes us. His body seems to be getting used to higher activity so he is doing well. He is eating bites of table food now and loves his taters and mangos.

Easter gave me some time of reflection. I am so grateful for the atonement and my Savior. We had a really fun time this Easter. We went to the egg hunt at Craig's preschool and then an Easter party at a friend's house later Saturday afternoon. Sunday we hunted eggs that the Easter bunny left for us and got some really cute pictures of the kids tearing into their Easter baskets. It was so good to have a holiday that wasn't colored in fear. Everytime we've had a holiday with Ethan we are either under heart monitors, or just waiting for him to crash. We are a very blessed family.

Catching Up!!!

2009-03-16T08:53:00.003-05:00

I am so very ashamed of myself for not updating for so long! We have been crazy busy but that is still no excuse! Ethan is doing really well. He is up on his hands and knees and scoots backwards! We call it getting stuck in reverse. He can also prop himself up on one hand when he is sitting up so we are now very mobile and I have to finish baby proofing. His tooth count is up to five. To bottom middles, one bottom on his left, and the two top teeth that are just to the sides of the middle front teeth. The top looks like a vampire and the bottom looks like a chipmunk, so we jokingly say that we should have named him Edward Alvin...

His three month check up was on March 2nd and Dr. Altman said he is looking really good. She loves that he is mobile and so active. He truly is a miracle as far as she is concerned because he has done this on his own. No physical therapy or intervention. Most heart babies are developmentally delayed in motor skills because their bodies are weak from lack of circulation/movement during hospitalizations. Not Mr. Ethan...

We were also able to wean off of his last dose of Lasix. This was given to him as a diuretic after surgery. His lungs are clear and sounding good! His next appointment is may 18th. We will have a sedated echocardiogram that day so that should be fun! *dripping sarcasm* 1-2 weeks before that echo we are to take him off of his enalapril so they can tell during the scan wether or not we will be able to wean the enalapril long term. Our fingers are crossed that we will be able to. That will take us down to two medications that he will be on long term. Aspirin is his lifelong med...;0(...and he will be on amoxil twice a day until he is five to help his body fight off infections since he doesn't have a spleen.

I've had a lot of reflection time in the past few weeks. We've hit some year anniversaries that have made me stop and think and be so grateful for the blessings we have received this year. feb 28th was the year anniversary of finding out Ethan had a heart problem. The day was fairly hard. As much as I wish Ethan hadn't been born with health issues, I can't help but be grateful for the fact that I have learned so much in the past year. I have met many wonderful people that share their strength freely as they are going through similar situations. I have watched friend's watch their children lose their CHD battle and still smile at pictures and memories of them. Their strength is amazing. I've also learned that I too am strong. I too can smile at difficult memories. Heavenly Father has strengthened me, my children, and my family. I feel as if we have been through a refiner's fire in the past year. And I am grateful for it...

Six Months

2009-01-18T21:03:00.003-06:00

Wow...Ethan is six months old. I can't describe the amazement I feel in having him with us. We have seen so much in the past year that we never imagined that we would. We have had the opportunity to meet so many wonderful people whose jobs/life mission involves helping little people with special hearts and their families cope with terrifying experiences. I thank Heavenly Father daily for these people. We could not have made it and would not have Ethan now without them.

Ethan continues to thrive. He has three teeth (can you believe it!). Two on the bottom in the middle, and one eye tooth on top...he's our little vampire! He can roll over from his tummy to his back, but refuses to even try to roll from his back to his front...I think it is either making him uncomfortable or he got used to us keeping him from rolling that direction for so long after surgery. He has survived his first chest cold complete with breathing treatments. His favorite toys are link-a-doos and his stuffed Grover. I need to go buy another one to have in the closet for when this one gets nasty...I've never had a baby get this attached to a toy!

Yesterday was a wonderful day. Not because anything special happened, but because it marked a huge milestone for our family. We have had Ethan for six months...when we didn't know if he would get to stay with us more than a few minutes. He is an amazing little boy.

Please Help!!!

2008-12-31T11:43:00.002-06:00

I need the help of anyone that is willing and able. I am going to run the It's My Heart - Noah's Legacy 5K on February 21, 2009. This 5K is to raise money to help It's My Heart fund it's support and advocacy programs for Texas Children's Hospital cardiology patients as well as all of those children that have congenital and aquired heart defects. I have posted the invitation letter below. Please sponser me in my efforts to give back to the program that has given so much not just to me, but to the entire CHD community... I don't usually ask for help like this...I hate sending my kids out on fundraisers for school, etc...but this is a program that is doing something to make the whole world a better place for a group of kids that have no choice in how their bodies are treating them.

Dear friends,

According to the March of Dimes, about 40,000 infants (1 out of every 125) are born with Congenital Heart Defects (CHD) each year in the United States. The defect may be so slight that the baby appears healthy for many years after birth, or so severe that its life is in immediate danger. Studies prove that CHD's are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from CHD in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the US due to CHD. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.Most people know someone who has been affected by Congenital Heart Defects or Acquired Heart Defects. On February 21, 2009 I will be helping It's My Heart raise awareness about the devastating affects of CHD at the National IMH CHD Awareness 5KRun & 3KWalk - Noah's Legacy. Funds raised through the IMH Run & Walk will support national awareness and help to provide comfort bags and programs to families while they are hospitalized throughout the USA. My personal goal is to raise $200.00 . Your support and donation of $100, $50, $25, $10 will help take a stand against the #1 birth defect and killer of children. Not only will you help me achieve my goal, you will also help It's My Heart make important advances in research, support and awareness of CHD. The IMH CHD Awareness Run & Walk is quickly approaching, so please make your pledge today. Thank you in advance for your support of my journey with CHD. Together we will make a difference!

For more information on It's My Heart visit www.itsmyheart.org.

From the heart,

Amanda Pennington

Yes! I am happy to support your efforts in the CHD Awareness Run & Walk! You can count on me/us for: _____$100 _____$50 ______$25 ______$10 _____$Other

Please make check payable to It's My Heart and return this form, along with your check to: It's My Heart19728 Saums Rd.PMB# 137Houston, TX 77084

Please include "Team Ethan James" in the memo of the check.You can also use Paypal, a quick and easy way to donate. Please include in the message my name and CHD Run & Walk. Just go to www.itsmyheart.org and click on "Donate".

ALL DONATIONS ARE TAX DEDUCTIBLE

If you would like to use this form, highlight it with your mouse and then choose print selection from your print menu...

Merry Christmas!!!

2008-12-20T13:10:00.002-06:00

I can't believe that we have survived with even the small shreds of sanity we have left this year, but here we are with a healthy-as-he's-gonna-get baby. We have learned many lessons this year in faith, love, friendship, and letting-go. Some of these lessons have hit us square between the eyes. Some have ripped through our hearts. While others have been a soft awakening of things that we once knew but forgot at birth. I am grateful for the past year and all that it has offered. I am so happy to have my family together and all of my kiddos doing well. True friends are once again important to me. I wouldn't trade the lessons learned and the empathy/compassion gained this year for all the heart healthy babies in the world. I never asked why this happened to Ethan. I just know that it did and it is making us all stronger. I wish that he didn't have to go through everything that he has gone through and will go through, but I can look back at this point and say that while the heartache for him is still raw, the lessons learned from our struggles this year are starting to outweigh the pain. I've always heard that Heavenly Father doesn't put more on us than we can bear. I can now say that this is a false statement. He puts on us what He needs to, and makes us strong enough for the journey. Two years ago I could not have sat in a hospital room and watch my baby get worse everyday until they could work him into a surgery that he might not survive. Now, through the strength that Heavenly Father blessed me with (because it wasn't there before I asked Him for it) I can say that I did that, and would do it again in a heartbeat if I had to. I don't want to, but I can...

I hope that everyone can hug their own kiddos a little tighter this Christmas from hearing Ethan's story. If he can help just one kid get a hug, or an echocardiogram then his story would have done it's job. And all of this will have a purpose.

For anyone who has wanted to do something for my family...please spread the knowledge around that Congenital Heart Defects are (forgive the pun) heartbreaking. They are an underfunded branch of heart research and the most common birth defect in the world. More kids die of CHD than all kinds of childhood cancers annually...awareness leads to action. And these little heart babies need quick and decisive action now...

Prayers for Abby

2008-12-12T11:43:00.002-06:00

I learned a few minutes ago that one of Ethan's "friends" from the CVICU is back in the CVICU today. She had surgery in October and has had several since then. She hasn't been home ffom the hospital in all that time and had just been moved down to floors a few days ago. Her parents are strong but this setback has got to have them discouraged. Please keep Josh, Mindy, and Abigail Williams in your prayers as they truly need every single one they can get. They are a special family with a beautiful little Fancy Abby...

Cutest Baby in the World!!!

2008-12-11T12:16:00.003-06:00

So...I have finally figured out how to get the pictures right side up and I've added a few more that I think are adorable. You can almost hear him laugh and "talk" when you see them...

"I'm totally nekkid...and I like it! ;0)"
"You guys are funny!"

"Why are you shaking your keys at me? Okay...I'll laugh"

Sweet boy...this is how he looks all the time...just a sweet little baby...

All ready for a bath!!!

Another Good Appointment

2008-12-05T07:26:00.002-06:00

Monday was Ethan's one month follow-up appointment. His chest x-ray was clear! Lasix is doing its job too well, so we only have to take that med once a day now instead of twice. Dr. Altman said that next appointment we will most likely take him off of Lasix completely and then that will leave us room to adjust his enalapril if needed. He will be on amoxicillin until he is five because of his aspleenia...and baby aspirin for life...

The best news of all is that we don't have a cardiology appointment until March 2nd!!! We have never gone more than four weeks without a scheduled appointment and so we are so excited that Ethan is doing well enough to go that long without his cardiologist getting nervous.

We also hit a milestone of sorts this week. Ethan is now six weeks post-op. This means that we can have tummy time again! We can also pick him up by scooping him under his arms instead of one hand under his back and another under his bottom. He loved playing on his tummy yesterday and is so strong! His head popped right up and he is reaching for toys so much better. He really is our little miracle man!

On Wednesday he had his four month shots. I know...they are late, but we had to wait until six weeks post-op for immunizations...he weighs 13 lbs 12 oz!!! He is on a normal growth curve...something that we were told not to expect. He is 75 percentile in his length, 25th in his weight, and 50th for his head circumference...the blessings just keep coming.

A Very Good Thanksgiving

2008-11-24T11:16:00.002-06:00

Okay...so I know that Thanksgiving hasn't even gotten here yet but we are having company and my life's too hectic to chance missing posting that day. I ran across a story/poem today that exactly fits to how I've felt since February. Every Thanksgiving I try to find one thing to focus on being Thankful for. This year...I'm thankful for Holland.

WELCOME TO HOLLAND

byEmily Perl Kingsley.

c1987 by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, 'Welcome to Holland.'Holland?!?' you say. 'What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say 'Yes, that's where I was supposed to go. That's what I had planned.And the pain of that will never, ever, ever, ever go away...

because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sweet Elise

2008-11-12T22:06:00.002-06:00

Elise had a project for school that included decorating a paper turkey any way that you want. A couple days after that assignment was given, the teacher came back and said that she wanted a story about the turkey. Elise had already decided to decorate her turkey like a heart surgeon. Here is her story...pictures soon I promise!

Dr. Fraser-gobbler was wandering around the operating room when a baby turkey was brought through the door. His name was EJ. EJ had congenital heart defects. This means that EJ's heart did not form correctly and that he needed surgery to fix it. Before EJ was born, his mom had a lot of tests to see if EJ's heart could be fixed. Dr. Fraser-gobbler was the best pediatric turkey heart surgeon at Texas Turkey Hospital. He said that EJ's heart would be hard to fix but that he would try. EJ's surgery lasted 9 hours. EJ was put on a special machine called the heart/lung bypass so that Dr. Fraser-gobbler could fix EJ's heart. During EJ's surgery, Dr. Fraser-gobbler got a nurse to call teh waiting room to tell his family how the surgery was going. EJ's family was very nervous but was happy that EJ's heart would soon be fixed. After EJ's surgery, he stayed in a special part of the hospital called the CVICU. The nurses took good care of EJ. His family stayed with him as much as they possibly could. After only 4 1/2 days, EJ got to leave the CVICU and go to a regular room on the 15th floor. After only three days in this room, EJ could leave the hospital. He had to stay in Gobbletown for another week, but then he could come home. I am very happy that Dr. Fraser-gobbler fixed EJ's heart because he is my little brother.

Okay...without me crying like a baby over this sweet story again. I would like to point out that she asked me for some technical terms, explanations, and timeline questions, but she wrote the meat of the story herself. What an amazing, sweet child she is. I am so pleased that she is using this opportunity to tell people about her brother. I can imagine that it is wonderful therapy for her to get it out. I know this blog has done wonders for my mental health. The prophet was so right when he told us to journal. It is a mental health thing.

Back to Houston...

2008-11-11T08:20:00.002-06:00

Yesterday we went back to Houston...but for Nolan. Whew!!! Felt so good to not have to go into the West Tower of Texas Children's when we were down there...I don't even think that I looked at it. Nolan had an ABR yesterday...which is basically a sedated hearing test. He has minimal hearing loss in both ears that could possibly be from his ear tubes. He is starting to jabber talk a lot more and is starting to try to form words. Ethan continues to do well. I was asked to bare my testimony last Sunday on thankfulness. I was nervous but a small part of me was grateful for the opportunity. This is the first time that I have given my testimony that I was not uncertain about any aspect of that testimony. I know that Heavenly Father has given me so much more than i can ever begin to repay Him for. I've always known that I guess, but it has taken this experience to really drive the point home. I can never repay what I have been given. I can only be thankful for the many blessings that I have been given and continue to come. To show my thanks, I can strive to be more Christlike. I am looking for ways to show my Heavenly Father my gratitude. I am more forgiving now. I try to give the benefit of the doubt. For people that have wronged me in the past and have not and will not apologize, I am trying to not hold a grudge. Those grudges aren't going to make them apologize and getting even is just going to make me feel worse. Besides, my big brother already paid the price for my hurt feelings. So I am free to let go of all of that mess and have joy. I have so much to be thankful for this Thanksgiving season. Why mar it? Now that you have read/listened to the ramblings of someone who has a hard time focusing on one subject, I hope that you all will give thanks to our Heavenly Father continuously...because we can never say thank you enough for the blessings he has given us...

Home at last...

2008-11-04T22:12:00.002-06:00

Ethan and I had a fairly uneventful follow up visit today. He is looking good and got the go ahead to come home. He slept most of the way home and woke up hungry (shock shock...the boy is always hungry). We got home at 2, just in time to surprise Elise and Craig when they were picked up from school. They were so excited to have momma home. This whole evening has felt so different from normal, but very normal if that makes sense at all. Craig summed it up well on the way to pick up Elise. He snuggled next to me in the back seat of the car (I was crammed between him and Ethan's car seat) and said, "Momma, I love Ethan not having to be at the hospital anymore." I love it too.

Follow up visit!

2008-11-03T22:33:00.002-06:00

Originally Ethan's post op follow up visit was scheduled for this Friday. I called Dr. Altman's secretary Friday and told her that I would love to have that date moved up to earlier this week if possible so that I would be allowed to leave Houston in time to go to Elise's carnival this Thursday. I also played the "I haven't spent a whole lot of quality time with my older kids and haven't been home in over a month" card. It worked! They are going to work me in to the schedule tomorrow between 11 and noon. Depending on if Dr. Altman thinks that Ethan needs to have another echo we should be on the road home no later than 5:00 tomorrow evening. We aren't going to tell the kiddos for two reasons. 1. If something prevents us from taking Ethan home tomorrow the kids (especially Elise) would be crushed and I don't want to have her feelings hurt. 2. I love surprises...especially when I am the one doing the surprising. I feel like it is Christmas! I can't believe that I'm actually going home! I feel like a new person because so much has happened since I brought Ethan down here. I'm going to have to get to know my kids all over again. I can't wait!

Daddy's in Town!

2008-11-01T20:14:00.002-05:00

Richard came down today to spend some time with Ethan and me. We were able to drive up and walk around the temple grounds with him and visit for a while. We are going to watch a movie in a minute but I got a call from a friend asking if there was a reason why I haven't updated the blog today. Since I was making her nervous, I thought I better get in here. Ethan is doing great. You would not know that he has ever had even a sniffle by looking at him much less open heart surgery. We truly are blessed.

Please continue to include Eron and Cody in your prayers. They are being felt as a huge sense of calm during this sad time.

Halloween

2008-10-31T22:08:00.002-05:00

It has been a very eventful day for us. I took Ethan to take a present to a friend of ours we met in ICU. I have mentioned him before and asked for your prayers in his behalf. I now continue to ask for your prayers for his parents Cody and Eron. Gavin lost his battle with congenital heart disease this morning following complications from surgery. He was a brave little man and an inspiration to me. His parents continue to teach me how to stay strong and fight for your children. Please pray that they will be comforted during this time and that they will find peace.

Ethan was able to trick or treat a few houses this evening in my sister's neighborhood. This is not how I would have chosen to spend his first Halloween but I'll take it. I am so grateful, especially with Gavin's passing, that Heavenly Father has seen fit to let Ethan stay with us for now. I feel blessed to have had him for this long and am trying to not take any of my time with any of my children for granted. Gavin and Ethan have taught me that...thanks little guys.

10/30/2008

2008-10-30T14:18:00.002-05:00

We are settled in at my sister's house for the week. Today I am concentrating on getting a good handle on what medication Ethan should take when. It's a whole lot easier to keep it straight when the pharmacy department at the hospital is sending up the meds he needs for the day in single use syringes labeled with the time the med is given. So far so good. I'm actually glad to have the opportunity to get used to keeping Ethan out of the hospital before I need to get used to my other kiddos too. It's been a very quiet day and a good one. I'm hoping that I will hear back from Dr. Altman's office soon about moving his follow up visit from next Friday to earlier in the week so I can go home. It feels so weird to be able to go anywhere I'm brave enough to take Ethan without clearing it with a surgery team, floor cardio/pediatric team, and a police force quality nursing staff.

Leaving the Hospital

2008-10-29T12:04:00.002-05:00

We are going to be discharged at some point this afternoon to stay in Houston until Ethan's follow up visit next week. Richard and Mom are coming down this afternoon to bring me my car and Ethan's carseat. I can't wait to go all the way home but I know that he needs to stay in town incase of an emergency for the next few days.

They are decreasing his Lasix to twice a day and upping his analapril to twice a day. He will still take his antibiotic for his aspleenia twice a day a she has been since birth, and he will take motrin or tylenol as needed for pain.

I can't believe that this part is almost over...

Back to Normal...Almost

2008-10-28T06:54:00.002-05:00

Ethan is acting like himself again. He is smiling at the nurses to make them smile (instead of the other way around) and eating and (finally) pooping. He is playing with his toys and cooing at everyone. The only thing that is different is how awake he is! He is more awake and awake for longer when it isn't nap time. Also, he now has a medication schedule. Aspirin for blood thinner once a day, amoxicillin twice a day, lasix 3 times a day, and motrin 4 times a day. I have to write it down to keep it straight and to make sure that he gets them on time. Hopefully, we will be down to amoxicillin, aspirin, and lasix before we go home. Motrin is mostly to keep his massive headache from his Glenn at bay. It seems to be getting better because he isn't as cranky. He didn't sleep as well last night because once again he is trying to flip his schedule into a night owl's. We are going to work on that today and not let him sleep as much at a time when the sun is out. He's been up since 5:45 this morning and he is still going strong at 7. I'm just so grateful that he is happy and doing well that I'm not even caring that I didn't get more than an hour of sleep between wake ups last night...Just want to get that schedule worked around before we go home and I have to get back to the reality of raising 4 kids. I can't wait...

Home Sweet 15th floor!!!

2008-10-26T20:56:00.002-05:00

The past few days have been great! I took Elise to see High School Musical yesterday and she had fun and loved it...We all went to the zoo today and had a good time at the zoo boo. Everyone has gone home now and I finally have a few minutes to update this little blog. Okay...Saturday Ethan's drain tubes were removed as well as his IV (it had failed) and arterial line in his arm. Today the arterial line in his neck was removed and he was able to be held against my chest. He is on Tylenol for pain on a schedule and can have other pain medication as needed. He is now on the 15th floor again and is doing great. He is no longer on oxygen and is holding around 80 on his oxygen sats. He is only on a pulse ox monitor like he was before surgery. Pictures soon. Updates sooner!

CVICU - 3

2008-10-24T22:14:00.004-05:00

Today has gone fairly well. Ethan is having a hard time with swelling and fluid retention so he is on Lasix (Spelling probably wrong) and they just gave him a second, but one time diuretic a little while ago. These are helping, but he is now on fluid restriction...basically 45 cc's of breastmilk every 3 hours. His is still on adavan and morphine for pain, as well as tylenol for headaches. He is uncomfortable but stable. Last night his central lines prevented us from holding him to help comfort him, but the nurse had me snuggle him in bed whild kneeling on a chair to help calm him. This worked until about 2 this morning and then he was able to have more of his pain meds and rest fairly well. I was able to catch a couple hours nap downstairs this afternoon to sort of make up for loss of sleep last night. I'm looking forward to seeing my older kiddos tomorrow. I miss them terribly. I am hoping to surprise Elise with a movie run to see High school Musical. And we are going to try to take everyone to the zoo at some point this weekend. This has gotten long and we are trying to take time to help the kids deal with everything being up in the air. With surgery over there is a light at the end of the tunnel, but it is still way down the tracks. I'm just ready to be home with everyone. I haven't been home for a month now and I miss my bed, cooking, my own washing machine, driving...the list could go on for a while. I am so thankful to have been here though...Ethan would be much worse off without this surgery. It's just hard to see him in pain. One day at a time right??? I think the days are getting longer. Time does not fly in the CVICU... Hoping for Ethan to have a better day tomorrow... I tought the stress level was sky high before surgery...now it is 10 times worse...

On the bright side, he is down to only one arterial line that is placed in his neck, so they let us carefully hold him for most of the day. It was much easier to comfort him but we were constantly watching that line to make sure it was not pulling. His IV failed in his arm so they will have to stick him again to catch another vein before they can remove his arterial line. After that is out he is going to be much easier to hold and love on.

CVICU - 2

2008-10-23T16:06:00.003-05:00

The pictures from today are much better than last night. He is more swollen but doing so so so well! Today has been fairly eventful. Ethan is off all of his "drip" meds that have kept him sedated. He is also off of the blood pressure medication as he is holding his own with his pressures. He is wiggling a little bit and moving his arms and legs. He is working his mouth for a pacifier but is not allowed one yet. This morning he was waking up too fast so we were not allowed to touch him or talk above a whisper to lessen the stimulation in the room. The low stimulation worked because he was extubated this afternoon. They have taken him off the respirator and stomach tube. They have taken out the arterial line in his groin and his atrial line that was in his heart. He's looking a little swollen from the bypass still but the swelling goes down everytime I see him. I have been amazed at his progress...if I had done what he has been through I would still be knocked flat! He's an amazing little boy. He is on room air at this point even though the nasal cannula is still in his nose. His oxygen saturations are hanging out in the low 80's and that is exactly where they want him to be. We are one step closer to home! They told me a few minutes ago that if he continues to do this well overnight they will move us back down on floor tomorrow and he will not have a need for a step down room. I should be able to hold him for a few minutes either later tonight or tomorrow morning. This has been quite a wild ride!

Special note to Elise: Ethan is fine and doing better than the doctors expected him to. He is looking forward to seeing his favorite big sister on Saturday. He may not even be in the ICU when you see him. You might be able to hold him then but we will have to ask the doctors to make sure it's okay. Momma has a big surprise for you when she sees you this weekend. Keep your chin up because this is almost over. I love you and will see you day after tomorrow. Have fun at the football game!

Momma

CVICU

2008-10-22T21:23:00.002-05:00

He looks great. The adrenaline is wearing off and I am exhausted. Nolan, Mom, and Dad have gone to Katie's house for the evening. Richard and his dad have gone to get Chili's take out, and Richard's mom and I are holding down the recliners in the waiting room where Richard and I will be spending the night. Ethan has two central lines, and atrial line, breathing tube/machine, three arterial pulse oximetry monitors, one veinous pulse oximetry monitor, catheter, tube to suction his tummy to keep off acid, and lots of tape. It looks much worse than it is. We got a surprise when we went to see him. A nurse walked in with a huge stuffed bear and balloons...from Dr. Fidone. Brought tears to realize that everyone is rooting for him...even those that we don't know or realize. I'm putting this day to bed guys...more updates tomorrow...hot doggie we made it through D-day...

Surgery 6

2008-10-22T17:11:00.002-05:00

Ethan update!!! They just called and they are through with the surgery part! He is off bypass and doing well. What a relief! They still have to place monitoring lines and a chest tube before they close and there is some small amounts of bleeding that have to be better controlled before he leaves the OR, but he is doing well! The light is at the end of the tunnel and we are catching a glimpse. Hopefully he will be out of the OR within the next 1 - 1 1/2 hours. Then we will have a dtailed conference with Dr. Fraser about what exactly he did and why and all that. Heart surgery carries a great amount of uncertainty of what you find when you actually get in there...

When I was typing above got called to post op meeting with Dr. Fraser...

Ethan was very hard to get started in surgery. It was almost noon before surgery was actually underway. The did an echocardiogram before surgery and Ethan was very stable throughout the whole procedure. He has two right atria that is common in Heterotaxy Syndrome. He has two superior vena cava...the one on the right is tiny and irrelevant at this stage and probably will remain so. The one on the left has been moved to connect with his pulmonary artery. So, we have a successful bidirectional Glenn Shunt. We have good heart function and good valve function. Ethan has two ventricles but they do not plan on correcting his AV canal because it is keeping him alive and he has to be looked at as a single ventricle heart...which is good because a ventricle repair in Dr. Fraser's words would be dangerous with the size he is. The other thing that was going to be fixed today was the pulmonary veins. His veins and pulmonary artery were twisting and pulling on each other which was what was causing his desaturations. Instead of cutting those veins and reworking them, he moved the pulmonary artery to release the pressure. So, we had two surgeries in one today which was only possible because of his size. Ethan came off bypass well and is on a ventalator. His saturations are in the high 80's and we are hoping they stay that way. His next surgery will hopefully be when he is 4 - 5.

Next update after we see him in about an hour. We are now CVICU parents...an exclusive club I hope none of you have to join. Thanks everyone for your support and prayers today...whatever you do...please don't stop! ;0)

Surgery 5

2008-10-22T13:49:00.003-05:00

Still no new news on Ethan. Nolan is doing sooooo well. He ate some lunch and is playing with his blocks on the waiting room floor in the Family Section of the Ronald McDonald house located in the Cardiovascular waiting area. Had to take a picture. He is jabbering to himself a little more (still no known language ;0)...maybe Ewok) and is a little louder than normal. I think it's because he can hear a lot better...

Just got a call from Ethan's team...he is on bypass and Dr. Fraser is now finishing isolating the vessels that are to be repaired. We should have another update in another two hours or so. Wow...he's on bypass...

Pictures are Ethan with the anaesthesiology team right before the hand over and Nolan playing just two hours after surgery...

surgery 4

2008-10-22T12:43:00.003-05:00

Nolan is out of recovery and doing well. He was really upset when he first woke up. The nurse gave him another shot of morphine and knocked him out. He has woken up again and he is a little loopy, but is watching cartoons and drinking apple juice in the Cardiovascular Surgery Waiting room. Haven't had another update on Ethan yet. Hope to hear soon...

Surgery3

2008-10-22T10:46:00.002-05:00

Nurse just came to update us about Ethan. He is doing well...they are still running lines...so they have not started the actual surgery yet. He has been a "hard stick" when they start IV's so this was expected. They will give us in person updates every two hours and then updates by phone after 3. They are expecting the surgery to last that long since his veins are a little uncooperative. Looking forward to seeing him in the CVICU...we're just waiting and praying at this point trying to distract ourselves from the moment.

surgery 2

2008-10-22T10:14:00.000-05:00

No word on Ethan yet...should be soon...Nolan is out of surgery and in recovery...Richard and Mom should be able to go in and see him soon. He will be in recovery for a couple of hours and on antibiotics and a soft diet for a couple of weeks. One down...

Surgery 1

2008-10-22T09:35:00.002-05:00

Nolan and Ethan both in surgery. Should hear something on Ethan within the hour. Nolan is in surgery and his should be over within the half hour. Nervous but okay this morning. The hardest part was letting go of Ethan and watching them carry him behind doors. I know he's in the best of hands. Updates soon...

Wednesday

2008-10-20T18:21:00.004-05:00

The picture on the bottom is of Ethan doing something that I did religiously that none of my other kiddos have done...suck his thumb...was so cute and he was sound asleep in his bouncy chair!
The picture on the top is of Ethan playing with the toy that Tammy brought him this afternoon. He actually took hold of it and put it in his mouth and chewed! We are progressing by leaps and bounds. He is in a size 2 diaper now and can use a regular flow nippie on his bottle. He is gaining better muscle control in his hands and actually rolled over last Friday night! I'm amazed!!!

Well...Nolan is going to have his ear surgery on Wednesday to get tubes put in and get his adenoids taken out. Ethan is going to have his heart surgery Wednesday to have his pulmonary veins reconfigured and a bidirectional Glenn procedure. Any and all donations of chocolate are welcome as are any cans of caffeine free coca cola classic....just kidding. I'm actually very relaxed today. Ethan has had his pre-op blood drawn, RSV nose wash done, EKG done, and chest x-ray done. They are going to wait to start the IV tomorrow as his veins are not cooperating today. The longer I am here the luckier I realize that I am. Ethan is the only Heterotaxy baby that I've seen here that is not on oxygen as well as every heart med and breathing med I've seen. I feel so blessed and humbled that Ethan is doing so well.

Please include friend of mine's baby in your prayers. Gavin was born last week with Heterotaxy Syndrome and is not doing well. He was supposed to have surgery this morning but was not doing well enough to have it. His body is not ridding itself of fluids as it is supposed to. He is now in the CVICU and his situation is looking fairly dire...Please pray for his family. His parents are Cody and Eron, and his grandma is Tammy. They are devastated that their baby might not make the week. I know the power of prayer and know that it is the only thing that can save him if it is Heavenly Father's will.

Well...that's all for now...I'm sure I will be updating this blog soon with more info...I can't believe that I'm going to have two babies in surgery on the same day!

Halloween Preview

2008-10-16T18:43:00.003-05:00

It is an almost definite thing that Ethan will not be home for Halloween. So, we took some really good pictures of him in his costume today so that he will have pictures in his costume even if he gets his surgery and is in CVICU for Halloween. Aren't they precious...what a ferocious dragon...but please...try not to be too scared.

We had a really good day today. Mom and Dad got me out of the hospital for a while and Richard stayed with Ethan. I needed to get out so bad. 17 days in the hospital is way too much. Recharged and ready for another week or so...

AAAHHHHHHHRRRRRGGGGG!!!!!!

2008-10-16T08:35:00.002-05:00

We got bumped at 3 am!!! An emergency came through that was ina worse situation than Ethan so that baby got our spot. While I am frustrated, I know that if I was the other momma I would want the baby that got bumped momma to stay positive. So, Richard is going to stay with Ethan for a few minutes this morning and catch a nap and I am going to leave the hospital for the first time (except for a 30 minute run to the grocery store a week ago) in 17 days. Thank you to everyone. We're back on standby...

Tomorrow is D-Day

2008-10-15T22:05:00.002-05:00

Well...tomorrow is the day for Ethan's first open heart surgery. I met with Dr. Fraser this evening to go over the goals for the surgery. He will make a new connection between the pulmonary vein confluence that is bigger and will alleviate a lot of the worry of the common vein squirreling all over the place. They will also look and see (after they are in the heart) if they can perform a bidirectional glenn shunt. They will have to measure a lot of Ethan's anatomy after surgery in underway so they will have to stop circulation while he is on bypass a few times which ups the risk of complications during surgery, but it has to be done. We are praying that everything goes smoothly and that the doctor's hands remain calm. We pray that the knowledge of our surgical team be at the forfront of their minds that they can perform surgery to the best of their ability and experience. I pray that my baby doesn't suffer brain damage from the bypass and circulation stops. I just want this to be over. Thank you to all of you that have prayed for my baby and that continue to pray for him. He needs them now just as much as he needed them before birth..if not more. I'll try to keep up the blog during the day tomorrow. It will help with my sanity. For right now, I'm taking it one breath at a time.

Still waiting

2008-10-12T00:07:00.002-05:00

We are still waiting for an opening in the surgery schedule. A transplant became available on Friday so that bumped everyone back a bit. We will be able to be in surgery at the earliest next Tuesday, but the doctors constantly tell us to not be surprised if we are bumped back later in the week or even the beginning of the next week. It's getting long but we are used to the idea of not going anywhere. We also decided that if he still has the IV in his head for Halloween that we are going to paint the IV cover grey and get a copy of the Jaws theme music to carry around when I get to take him for a walk in the halls during the day.

I got a mobile from the playroom today for his crib. Kind of made me sad. Around here, you aren't considered a "resident" until there is a hospital owned mobile hanging over your bed. He loves it though and it gives momma a break from holding him when he is fussy...he just looks and the mobile and starts smiling and cooing. You can't help but love the little turkey...just wish he didn't hav eto go through this. A mom I talked to today told me something that didn't make sense to me until I thought about it for a while. She said, "Heart kids carry the scar, but the moms feel all of the pain". While that is not true of the physical pain of open heart surgery, it is completely true of the inner pain that you feel when your child is going through this. I do feel blessed that he will have no memory of going through any of this. When he is a "big kid", he will have his scar, but the pain will be in my memory not his. I wouldn't have it any other way.

Cath...

2008-10-09T11:47:00.001-05:00

Cath was cancelled at 11:30. Dr. Fraser thought it unneccesary and feels comfortable taking him into surgery asap without the cath. We don't have a surgery date yet. You will know as soon as we do!!!

Cath tomorrow

2008-10-08T18:35:00.003-05:00

After the IV was put in and he had calmed down. He loves the swing, but he still looks a little worried

before the IV was put in...notice how happy he is...

Well...we are going to have the cath procedure tomorrow. There was a cancellation so Ethan is the second case of the day. He will be in the procedure between 10 and noon. He was placed on fortified milk this morning to "fatten him up" for surgery so he is allowed to eat that until 2 am, regular breastmilk until 4am, pedialyte until 6 am and then they will start IV fluids. His IV closed last night (of course) so they had to start another IV today. They tried both feet with no success so he has an IV in his head (his hands and arms did not present a good enough vein even to try to catch today). So we're starting Halloween early by dressing up like Frankenstein (notice my humor to keep that positive outlook going). They estimate that his cath will last 3-4 hours and that he will be in recovery for at least that long. So, long day tomorrow...

The cath will measure the pressures in his heart and give the surgeons a better idea of what types of surgery Ethan will be eligible for. We are still hopeful for a bi-ventricular repair, but we will have to wait and see. We have faith that whatever surgery we have it will be what is best for Ethan.

Nolan and Ethan updates

2008-10-07T19:37:00.002-05:00

Nolan had his appointments with Ears, Nose, Throat (ENT) and audiology this morning. ENT recommends tubes in his ears and removal of his adnoids (spelling) so we will be doing that in two weeks on the 22nd. He is on antibiotics because his left ear is still infected. His audiology visit determined that he has hearing loss in his left ear most likely from the ear infection. They will do another hearing screen after his tubes have been in place for a few weeks...on Nov 10th.

In the meantime, this evening the got a urine sample from Ethan so they can check for infection pre-op. His IV is still flushing so I am happy...they don't have to stick him again as long as that is open. They will do a cath on him as I mentioned previously either Fri or early next week. We will have surgery most likely mid to late next week. I'm not ready for this. I don't think you can be ready for this. The urine sample caught me by surprise. I knew that they needed one but I didn't know it was coming down to this close.

I am tired of everything being up in the air. I hate this waiting game. I know that we are working around pre-op procedures and also surgery schedules, but I'm almost ready for this to just be over. I am relishing every minute I'm getting to spend with Ethan because I can't help but think that I won't get to snuggle with him like he likes for a while...He likes to be held chest to chest snuggled up on your shoulder. With a sternotomy, he will not like that for a while and might not again...it might irritate him too much. I just want a magic pill...

No one should have to go through this...especially a baby who has done nothing to cause such great amounts of heart disease...

The next step

2008-10-07T08:19:00.002-05:00

The questions about surgery are as follows:

Where: Texas Children's
Who: Dr. Fraser
When: will be decided soon
What: most likely a Glenn procedure and a correction of the pulmonary veins
How: that's up to Heavenly Father and the surgeon!

All kidding aside, during rounds this morning they will be setting up a time to come in a do Ethan's blood work for surgery as well as scheduling his cath to determine his anatomy anomalies and his pressures within his heart. Surgery date to come soon!

Basically, his pulmonary veins form a sort of pouch then one common vein stems off and goes around his pulmonary artery that leads to his right lung, then it goes back down and into his heart. They are worried about restrictions within these vessels and it would be better if they just hooked up to the heart like normal, so that's what they are going to try to do. His anatomy is too complex to be able to do a full repair unless they see something different with the cath...so we will be looking at a Glenn. Basically, they take his superior vena cava and detach it from the heart and connect it to the pulmonary vein so that he gets straight blue blood to his lungs instead of a blue/red mix. I don't know if they have decided to disconnect his pulmonary vein from his heart or leave it as it has got a lot of blockages and stuff that could get nasty. I have a picture that Dr. Altman drew to explain his anatomy to me and as soon as I can get it scanned in I will.

More updates soon...we're coming down to it now...

Preliminary Results

2008-10-03T19:02:00.002-05:00

The cardiology team met with me briefly today and although all of the results of the MRI are not back yet...meaning that they haven't gone over them yet...the preliminary findings are that the pulmonary vein conflusion enters the heart in the center of the heart after being somewhat restricted by the bronchus. They were also able to see the positioning of the pulmonary artery better and it looks like the artery is overylying the VSD and partly coming out of the left ventricle. Which means that we don't have DORV, we have complete transposition. This may or may not make his heart easier to repair. We will have to wait for the surgical conference on Monday. Dr. Altman is the floor cardiologist this weekend of which I am grateful. I feel so comfortable with her...we've worked with her since February and I can read her doctor speak better than anyone else's. I don't know what is going to happen next week. I am trying to prepare myself for anything.

We made it!

2008-10-02T18:03:00.003-05:00

MRI is over and Ethan is back in his room with us resting comfortably. He was agitated when he came out of anesthesia but quickly went back to sleep...we are looking forward to a happier baby when he wakes up...although he will definitely be hungry! They got between 800 and 1000 pictures and are processing them now...initially it looks as if his pulmonary vein running between his bronchus (spelling...sorry) and another harder structure that I can't begin to remember the name of and in some positions the vein is being compressed and causing desaturations. We will know more tomorrow after the cardiology team looks at the images. We don't know if they will wan to do a surgery before he goes home or not...hopefully that question will be answered tomorrow...anyways...we are back in waiting game mode and are just grateful that Ethan's first experience of "being under" went well. Until tomorrow...

MRI

2008-10-02T14:46:00.002-05:00

Just sitting here waiting for Ethan's MRI to be finished. I am updating the blog instead of sitting here twitching! It's not working really well, but at least I feel productive. I was able to carry Ethan downstairs and then be with him holding his little hand until the happy gas took over. He is wrapped in heated blankets so I'm left with a laptop computer and his blankie in the waiting room. I never in a million years dreamed that I would be where I am right now. I feel helpless because I am not in control of what is going on. This is the biggest trial of faith that I have ever been through because I not only have to rely on my faith in Heavenly Father but I also have to have faith that the doctors are doing their very best and that everything is working out for the good of everyone involved. Elise wa sso sweet last night. She has never once complained because I have been out of town. She and Craig have gone to school and Nolan has gone to stay with my mom or Jennifer during the day and not once have any of them complained. They know that I have to be with Ethan...and they know that they will see me on the weekends. But last night Elise asked if I would be home by Saturday and I honestly answered that I didn't know. Then she asked if I would be home by December because they are having a mommy/daughter activity with her group and she wanted me to be there. She was so innocent and sincere. She really wants me to be there and was asking so she could prepare herself if I couldn't. I am so looking forward to spending time with her and her brothers. I am in my own world here at the hospital and have to keep reminding myself that they are still doing their normal things...

baby pincushion

2008-10-02T11:02:00.004-05:00

Ethan is a little baby pincushion this morning after yesterday. They have tried to start an IV 10 times since yesterday afternoon. They even had the NICU team come up and try. His veins are not cooperating. So, he's on clear liquids until noon and then he will be ready to go downstairs to prep for his MRI. They are going to give him "knock out gas" to get him under so that they can start the IV and then switch him to IV anasthesia. I'll continue the updates throughout the day. I'm really nervous but ready to have this over so that we will know what the next step in Ethan's journey is.

Back at Texas Children's

2008-09-30T18:02:00.005-05:00

We are now admitted to Texas Children's for the fourth time in Ethan's not quite eleven weeks. He is having a bit of a fussy day. He just wants to be held and look around. He is getting used to being here again and is playing now. Richard was able to borrow a laptop for me to take to the hospital and so I am able to update blog and email more regularly. Ethan is on the MRI schedule for Thursday afternoon and will be under general anesthisia (I know I didn't spell that right) for the procedure. Richard will be coming down tomorrow evening to help me through the procedure. I am more calm about this than I have been for the past few days. I know that Ethan will be okay through this. I'm just a helicopter when it comes to him. I sound like a broken record bt thank you to everyone who has continued to keep my family in your prayers. They are felt daily.

Ears, Nose and Throat Doc

2008-09-27T18:52:00.003-05:00

So we went and saw Dr. Duncan yesterday and he wanted to do two procedures to look at Ethan's airway. We did one only because the second one is done at the hospital under anesthesia so that we can get a look at what is going on beyond his vocal chords. The upper airway was checked by putting a camera down Ethan's nose. His upper airway is fine. On October 6th we will check his lower airway at Texas Children's. So...just to recap...we will be admitted for his crazy off the wall sats on Tuesday, MRI Thursday, Cardiologists and surgery team will review his case in the conference room Monday and he will also have the lower half of his airway checked on that day. October 7th is Nolan's speech and hearing evaluation so I figure I'm going to live at Texas Children's for the next few weeks best case scenario. Today Ethan's oxygen saturations have been in the upper 70's and he has rested comfortably. He got way too much stimusation yesterday and has had a full day of recovery. We're planning on another one tomorrow.

Unexpected Results

2008-09-25T22:48:00.002-05:00

Today we went to Ethan's cardiology visit and got some very unexpected results. We saw Dr. Altman and she is concerned about his saturations being all over the chart. She was going to admit him pending an inpatient MRI (so we wouldn't have to wait as long for one - she didn't feel comfie waiting) but, since they can't get an inpatient MRI done until next Thursday, she is sending us to an ear, nose, and throat doc tomorrow instead. This is for the other concern she has. I have noticed since having his saturation monitor at home that when Ethan lays down, his SATS go down into the low 70's. When he is being held up or is on his tummy, his SATS go up as high as the low 90's. This is confusing and we are going to the doc tomorrow to make sure that his brochioles (spelling) are not restricted or the circulation compromised. We will go in for another check with Dr. Altman on Tuesday and be admitted for his SATS then so that we will not have to stay at the hospital for a week before the procedure on Thurs. The Monday after the MRI, the entire cardiology staff and surgery team will have a conference over his MRI results to best decide which course of action to take for surgery. Most likely, but depending on MRI results, we will be looking at a Glenn shunt within the next few weeks. I am scared to death. I am staying with my sister until Tuesday and am so grateful to her for willingly opening her home. Richard and my dad have planned to take Elise and Craig to an Astros game for weeks and have tickets for tomorrow's game. Mom and I are going to pick Nolan up tomorrow evening before the game starts so that they can have the game they have been looking forward to. I already miss my older kiddos. There is no telling how long it will be before our family is back together again. Best case scenario is a week. Those of you who know my cell number please fee free to call. If I don't answer it is because we are in a doctor office or we have bad reception. Until tomorrow!

Tune Up #2

2008-09-23T11:25:00.000-05:00

We were back in the hospital for five days over hurricane IKE...that's right...I weathered the storm on the 15th floor of Texas Children's Hospital in Houston. Ethan started getting bluish around his mouth and eyes and i called Dr. Altman and we were admitted Thursday before the storm blew in. A little scary during the hurricane but we were one of the few buildings in Houston that never lost power. They did an echocardiogram and noticed that ethan's blockage to his pulmonary artery is getting a little worse. The ER cardio team wanted to do a cath lab on him, but did not (thank goodness...it would have blown his heart out of balance). We are going to have an MRI in October to get a better look at his heart and hopefully get a more informed game plan for his long term care in place. He is back at home on an O2 monitor and is actually asleep right now. He's doing well and we are very grateful to have him home.

The day after he came home from the hospital he had his two month shots and he handled those really well....just like the little fighter he is! Our next appointment in Houston is Thursday to see Dr. Altman, schedule a definitive date for the MRI and check up on his progress. On another note...he was extremely cranky yesterday and I was starting to think that he was having chest pains or the like (it's always in the back of my head and I am trying very hard not to overreact). I put my finger in his mouth because I couldn't find a pacifier and was about to call Houston when he started chomping that finger like there was no tomorrow...the little stinker is teething!!! Not even ten weeks old yet and he's teething! You can see where his little teeth will be coming in on the bottom. It's bubbled up and giving us both fits at this point!

Again, I will try to be better about updating the blog on time...it's been a week since he was discharged today and I've just now gotten time to tell everyone that he was even in the hospital!

A Tune Up

2008-09-04T10:51:00.000-05:00

This week Ethan had his first “tune up.” At least that’s what the 15th floor pediatrician at Texas Children’s called it. Last Sunday while I was at church I noticed that Ethan was looking a little blue around his mouth and that his respiration had gotten faster. He usually has a respiration rate of about 40 – 45 breaths a minute. On Sunday he was around 56 every time I checked him. Craig and Nolan have both had a stomach virus but I immediately discounted that in Ethan. He wasn’t vomiting and he didn’t have diarrhea…yet. He never threw up but his poo got orange instead of breast milk yellow like normal. He got dehydrated. His heart had to work harder which threw his balanced defected heart out of alignment and made his sats get bad. When we got him to the Texas Children’s ER his oxygen sats were 59 – 62…His normal is 75-85. They terrified him by holding him down while they repeatedly tried to get a viable blood sample from him…his blood is thicker because of his defects (he has more red blood cells than normal so he can survive at 80%saturation) and it made it difficult to get a blood sample without it clotting. He was on oxygen until Tuesday evening and he got to come home yesterday. It could have been much worse and now we are more aware of the type of almost unnoticeable cues to look for that will cause him major trouble. I know that this will not be the only time that he has to have a tune up, but I am feeling very blessed in the fact that it could have been much worse and that we have survived a major hurdle with his with sanity in tact.

First week of school!

2008-08-29T08:22:00.001-05:00

Well, we have survived the first week of school. Elise started third grade on Monday and Craig is in Preschool. so far they have had a really good start and made some good friends. Nolan is talking more and catching up with his communication. When I was leaving with Ethan for hsi cardiology appointment on Wednesday, Nolan waved his little hand and said bye!!! This is the first time he has done this and the first time he has said anything that clearly. He has continued to do it for the past couple of days and we are thrilled. Ethan went to Houston for another echo and chest x-rays. After 2 1/2 hours of tests and doctor evaluations, Dr. Altman came in and asked how he was doing. I told her he was doing fine and that he was our little miracle man. She said that after looking at his echo and x-rays and going over all of his data, she had to concur. Needless to say it has been a really good week. I am so grateful. Please continue praying for Ethan and our family. He is doing well because of the faith of those praying for him. Our next appointment is September 26th...a full month away. I can't believe that they are comfortble enough with his condition that he can go four weeks without an appointment. Prayer is amazing!

First Panic Attack

2008-08-17T11:33:00.001-05:00

Ethan is fine. Just thought I would get that out before the rest of this post. Last Thursday he started running a low grade temperature and so we took him to the Dr. Fidone Friday morning. The checked his blood count and did flu and RSV tests just because he is so little. Those both came back negative as we thought they would but had to check and make sure. He has boogers. That's our final diagnosis. The only concerning issue for the Dr. was the fact that Ethan is coughing. So, we get sent over to the hospital imaging center for chest x-rays becuase he doesn't have the immune system to fight off pneumonia...as if any 4 week old would! Anyway, he's fine but at home with Momma this Sabbath morning to stay away from germs. I sneaked him up to the church yesterday for a few minutes so I could watch my other kiddos play at their Primary Activity water day. They had so much fun. I am so grateful for their primary teachers and leaders. They are really great ladies who take their callings seriously. Today I've been able to put Ethan down for about 10 minutes. He wants in my lap. I did get to go to the bathroom which I am calling a luxury at this point. Texas Children's has some scheduling conflict with the Echo Lab and my cardiologist this week so his next cardilogy visit will be put off another week. We go back to Fidone in the morning to check up on his cold.

On another note, Elise was very excited at Ballet this week. She has been assigned a spot in prologue (spelling) for the company's performance of the nutcracker this Christmas and she is so over the top excited about it. We are very pleased with her progress. This is her third year of ballet company but her sixth year of dance. She is such a good girl and big sister.

The rest of the crew is doing fine. Craig started preschool this week and Nolan is just being Nolan. He is starting to talk more but we are really pushing the issue with him. He jsut doesn't want to communicate. I can't wait until his speech lab/audiology visit at TX Children's in October. I just want to make sure that there isn't anything physically wrong that is delaying his speech and get him into speech lab so he can catch up to his milestones. I just want to be able to talk with him and cut his frustration level.

I'm Awake!

2008-08-11T12:56:00.000-05:00

Ethan is doing as well as ever. He had another cardiology appointment with Dr. Altman last thursday and she is so pleased with how he is doing that he gets to wait two weeks until his next appointment. His personality is starting to present itself. He is amazing...and wide awake. He loves to cuddle. He loves to look around and watch the world. He expecially loves watching the wind blow the trees and looking at the ceiling fan. He gets a concentration wrinkle in his forehead when he watches. It's like he is trying to figure them out. I feel so blessed to have him with me and that all of my kids are together. One thing has come out of this experience. I am enjoying my kids more than I ever have. Every minute I can spend with them I do. I'm almost scared to let Ethan out of my sight. Elise has asked that I also mention that he loves music. He likes to sit in his bouncy and listen to the jungle sounds that are programmed in (it's a jungle themed bouncie). He hates the vibrations though. Wake him up and overstimulate him every time! Until next time...keep up the prayers!

A week at home

2008-08-05T13:24:00.000-05:00

Ethan has been home for a week now and he is doing beautifully. he has seen his pediatrician, Dr. Fidone twice for weight checks and he has made the trip back down to Houson to see his cardiologist, Dr. Altman once. Last Thursday he had an EKG and chest xrays to check for any progress of heart failure symptoms. So far so good. There has been no change. He was places on a Holter monitor for 24 hours and we should get the results from that on Thursday when we go back to Houston for another EKG, xrays (maybe) and an Echocardiogram to check for progress. He is up to 7lbs 6 oz as of yesterday morning. We are truly blessed! I'll try to keep it updated better since we have aclimated to being at home a little better now. Elise has Little Drillteam camp this week and Craig starts preschool next week (on Wednesday).

Monday is the day~

2008-07-26T10:29:00.000-05:00

Just had round with Cardiology...definitly going home monday...have to take infanct CPR and Ethan has to have some tests but then we will be going all the way home. Tuesday Ethan will go to his local pediatrician (used to be a pediatric oncologists for St. Jude's so he's very good and the cardiology team knew him by name)to get him up to speed and get his fist check up. I can't beleive we are actually getting to take him home!

A great night.

2008-07-26T08:59:00.000-05:00

Ethan did beautifully last night. He slept a lot more and is eating like a little piglet. He hasn't had to have his NG tube put back in because he is doing so well on his own. We are looking at a Monday discharge. Before discharge we have to take infant CPR and Ethan will need his newborn hearing screen and yet some more bloodwork. Autumn, to answer your question, they will let us go all the way home. It is only after surgery that they want us to stay within an hour from the hospital. That means that I will be able to sleep in myh bed and use my bathroom...it is amazing the things that you look forward to. I may stay with Katie until Thursday though because I have an incision check with Dr. Kirshon on Thursday at 2:30p. I don't really want to have to drive Ethan to Houston and back in one day three days after discharge. Plus he will have a follow up visit down here sometime the end of the week. We are going to blaze a trail between Lufkin and Houston. Older kiddos are heading out with Richard, Mimi and Paw Paw to the beach in Galveston this morning. Hopefully rounds will happen before they leave so we can get plans set for Monday.

Feeding Tube

2008-07-25T19:53:00.000-05:00

Ethan pulled his feeding tube out by himself by accident this afternoon. The pediatrician reccomended we keep it out to see how he does with his feedings. I'm very please to report that he has taken every drop offered to him since the bottle before the tube came out. This means that they will watch his feeds for the next 48 hours, do his newborn hearing screen on Monday morning (only because they don't do them on the weekends) and get Richard and I CPR trained and we will most likely be coming home on Monday. I see the light at the end of the tunnel. Right now he is sleeping like an angel and Richard and I are going to fix some sandwiches and microwavable bowls of soup. I'll continue to update as long as the WIFI doesn't frizz out on me. I'm elated but exhausted...just like every other new mom I know.

Ethan ate a whole bottle!

2008-07-25T13:27:00.000-05:00

Ethan just finished eating an entire bottle by himself without help from the NG tube! We are looking forward to being able to go home as soon as he can eat without the tube entirely. We are no longer in the NICU but have been moved to the cardiology inpatient floor to be monitored and learn how to eat. Cardiology met with us a few days ago. His anatomy is the same as they saw on fetal echo, with the exception that they found all four pulmonary veins (thank you for your prayers) Instead of each vein being connected to the heart, they are coming together to form one vein and then draining to the heart. This called a conflusion of the pulmonary veins. This makes him work a little harder but will not require immediate surgery. When he has his open heart, they hope to do a full repair but will have to wait until they are in there to see if they can move his aorta to where it won't obstruct the valves. A full repair will mean a four chambered fully functional heart...and it will be a repair not a band-aid like the other option is. If they can't move the aorta like they want/need, they will do at least two surgeries and he will have a single pumping chamber in his heart. Ultimately, these procedures (called a Fontan) will fail and it will require further repair or a heart transplant. We are again having to take a leap of faith that Heavenly Father is in charge and will be able to be with the surgeons to complete a full repair. Again, your prayers are needed and being felt. We have seen the miracles that come when people of faith unite in prayer. I'll try to be a little better about posting. The WIFI in the hospital has been real ornery about posts the last few days.

Meet the Family

2008-07-20T23:59:00.000-05:00

Today Ethan met his big sister, Elise, and big brothers, Craig and Nolan. I was so happy to see my kiddos all together. Elise was really happy to see and hold Ethan. Craig just wanted to see "his baby" and Nolan, well, Nolan looked at him and picked his nose. If that isn't love I don't know what is. I am so thankful to my family for watching out for and taking such good care of my older kids while I am taking care of Ethan. The boys have returned to Lufkin with Mimi and Paw Paw and Elise is having a big time with her Aunt Katie. They went to Fudruckers for dinner tonight and I don't know if I'm going to be able to convince her to come back home!

I know I have mentioned that Ethan has reflux and has started eating through the aid of an NG tube in his nose. Today was a rough day with his eating. He will barely nurse, so we let him as long as he will, then try to bottle feed, then the rest goes down his NG tube. My other kids were such good eaters that to have one that is having a hard time is something that I never thought I would encounter. Everyday he is getting stronger and we are going to take this stay in the NICU one day at a time until he is ready to come home. I will be discharged in the morning and hopefully will get a room (they are extremly limited and given by priority on a daily basis) at the Ronald McDonald House just down the hall from the NICU. It has been such a good sabbath. Not a whole lot of quiet time, but what I managed I made sure that HEavenly Father knows that I am aware and completely grateful for the blessings he has sent to us in the past few days and months. Richard and I are also grateful for all of our friends and family that have supported us during this time. Your prayers are felt and we are so greateful for you.
Our first family photo. Wow...a family of six! It's going to take a while to get my mind wrapped around that!

Elise was so proud of her littlest brother. She looks so grown up...if you look close you can see her temporary tatoo from Chuck e Cheese.

I had to put this picture on here. Ethan has about two 30 minute really "awake" times a day and I happened to catch him in one when I went down to feed him around noon. I picked him up and put him on my shoulder and he lifted his head on his own to look around. Richard happened to have the camera out and caught the best picture. It even shows his little old man wrinkles on he forehead!

A good couple of days...

2008-07-19T20:45:00.000-05:00

Ethan with his new NG tube...and without his IV...that's right, he has both hands free...

Mom holding Ethan. I am still swollen and sore, but so happy that I can go downstairs and hold him whenever I want!

Yesterday Ethan had an upper GI to test for malrotation of his bowels...He DOES NOT have it! WOOHOO!!! This is incredible news. This means that we do not have to watch one thing on our laundry list of things we have to look for. The Neonatal/Cardiology team came by for rounds this morning and gave me the news and, smiling very very big, told me that if he did not have any problems eating then we could go home the early part of next week...as if a couple of days from now...to grow for surgery. No sooner had that been fed then Ethan threw up a feeding. The upper GI showed evidence of reflux and it has become evident that he has it. They placed a NG tube so he could better tolerate feedings and we could keep a closer track of how much he is eating. This will delay his release but to be talking about releasing him from the hospital two days after he is born is unreal to me. We have received so many blessings that I keep forgetting some in "thank you prayers". He has been upgraded to NICU level two which means that I can change his diaper and pick him up when I want instead of when the nurse tells me I can. He has surpassed everyone's best expectations up to this point. Thank you guys for your prayers, fasting, and thoughts. I know for a surety that this is why Ethan is having such good reports and making such wonderful progress. Sunday is sibling visiting day and my older kids (especially Elise) is ecstatic about finally getting to come see their little brother.

Ethan's blessing and Neonatal Team video

2008-07-17T21:35:00.000-05:00

While I wasn't present for Ethan's blessing we did tape record it and I am looking forward to hearing it soon. We couldn't put him in his special outfit but he did wear his hat that Mimi made and will let him wear his blessing outfit the first time he goes to church...in a couple of months. He should stay little enough to fit into it for a while. The video is of Ethan's neonatal team starting his IV and talking to Richard. I have had so much fun with this blog. It is such a blessing to get to send this information out from the hospital. I love modern technology! I also have put my favorite picture of Ethan taken...so far...I'm sure there will be more to come. He just looks so peaceful and angelic. What a blessing! Also, Elise, Craig, and Nolan should be able to visit their little brother on Sunday...can't wait to have my whole family in for a picture...

Ethan's here!!!

2008-07-17T21:04:00.000-05:00

Ethan arrived at 12:48 pm today. He weighed 6 lbs 13 oz and was 19 3/4 inches long. We were trying for a vaginal delivery but my blood pressure was dropping (thanks to a wonderful epidural) and Ethan was not handling labor well. His heart rate dropped dangerously low so we proceeded to a c-section. I was scared but a wonderful nurse stayed with me and kept me calm until the section was underway. I'm finally in my own room. The hospital is terribly busy so I didn't get into my room until after 5:00.

I am so grateful that everything is going as well as it is. Ethan was pink and crying at birth. After a quick check over by the neonatology team, I got to hold him for about 5 minutes. The cardiology team was with him all afternoon and we should get the results from the tests they ran soon. As of now, Ethan is breathing room air with a pulse ox of around 85. He has required no medications. I feel so blessed by my father in heaven. I know that He is watching out for us. The spirit was strong in the delivery room and has given me feelings of peace all afternoon. Your prayers and faith are helping to sustain us so please continue your prayers or add us to them. Things couldn't be going better for Ethan right now. I can't wait to get to go downstairs to see him.

I was able to hold down some ice chips and apple juice and will be able to eat something at midnight. They will also take out my catheter so that I can get in a wheelchair to see Ethan. I am going to see him in just a few hours!

Tomorrow's the day

2008-07-16T20:40:00.000-05:00

No picture today, but I did go see the perinatologist this afternoon. We are now officially scheduled for induction tomorrow morning. We are hoping to leave for the hospital about 3am. Dr. Kirshon stripped my membranes about 2:30 this afternoon (not pleasant and I don't highly recommend) and up until about 7pm nothing had changed. It is now almost 8:45 and contractions are starting. No regular labor pattern yet but it will happen soon. With any luck we will have to go to the hospital sooner than the induction is set for. More to come soon...

Everyone else...

2008-07-09T08:24:00.000-05:00

My eight year old was watching me look at the internet the other day and wondered why I would have a blog without her and her brothers in it. Now that I think about it, this is our family's journey, not just Baby's. I am posting a picture that was taken in early December of 2007. We used it for Christmas. I also hadn't gained any baby weight yet so I don't feel competely grossed out when I see it. Elise is my eight year old, Craig is four, and Nolan is two (and belly laughed in every picture). Anyway, thanks for all the support you guys have given in the past few months. Keep it up! Your prayers are the only thing that keeps me going some days.

Ethan James

2008-07-05T10:16:00.001-05:00

I wanted to start this blog before Baby James is born. He was diagnosed with severe heart defects when I was 18 weeks 2 days pregnant. His amniocentises came back normal. He has Heterotaxy Syndrome, Dextrocardia, Transposition of the Great Arteries compounded with a single ventricle outlet and an Atrioventricular Septal Defect. His surgeon said that when he is born the cardiology team will determine if he has sufficient blood flow to the lungs and to the heart. If he doesn't, he will require immediate surgery if it is possible to correct. We are hoping that he doesn't require this surgery. He will have at least one open heart surgery and more likely he will have three or more before he is four years old. I will update this blog when he is born to let friends and family know of his updates. My scanner is not working so hopefully we can get some pictures straight from the camera.

Update: Richard was able to scan the ultrasound photo. We have more recent ones but this one turned out the best!