Update on Ethan...

Ethan hamming it up for the camera - 5 mos.

Ethan came through the catheterization in August with flying colors. It was pretty funny when he woke up after the procedure he immediately started screaming at the top of his lungs (according to the nurses) which is just so Ethan. Turned out he was still hungry and was mad at them for making him sleep instead of eat. So they fed him a bit and he was fine. He was pretty cute then because he looked awake but if you really looked in his eyes, you could see that he was still way out of it.

They got a good look at his heart and devised a plan. The good news is that he will only need one open heart surgery! The plan was to operate on his heart at the end of October but as with most "plans" we make, God has other ideas. Ethan has a craniosynostosis which means that the sutures in his skull closed too early restricting brain and skull growth. He has no soft spot on his head (its closed) and everyday his head becomes more and more misshaped. He already had a CT scan and his brain is in the shape of an hourglass. His brain looks like its being squeezed. They say that his brain condition looks good for now which is good news. But we need to fix it soon to prevent any injury to the brain and also because the longer we wait, the harder his skull gets. Apparently once his head gets too hard (usually after 6 months old), the surgery to correct the problem becomes even more complex and extensive. The neurosurgeon wanted to operate immediately (this was at the end of August) but wanted to run it by cardiology first. Of course, they said no way can he go through cranial surgery with his heart unrepaired. So, the heart surgery has been moved up and the neurosurgery will follow within 10 days or as soon as it is safe.

The date for the open heart surgery is Oct. 8, 2009 with another catheterization the day before to take care of some things the heart surgeons will not be able to reach during surgery. Hopefully he will recover well and then the neurosurgeons plan to do his cranial surgery on Oct. 19th. He will not come home in between surgeries and will be in the Cardiovascular ICU in between. So we are looking at about 2 weeks in the hospital. We have family coming down to help with the other kiddos while we are focusing on Ethan and we are so thankful for their generous giving of their time.

SO! I will be updating alot more in the next couple weeks so you can know what to pray for specifically but it doesn't hurt to start those prayers now. I am still a bit numb to all that is going on with him and really still in a bit of denial that its going to happen. We have been so blessed with such good news up to this point regarding Ethan's health. We really have had the "best case scenario" all along. Things could have been soooo much worse. But reality is knocking at our door as I call the blood center to find out how to donate for my son who will for sure need transfusions during both procedures. Its hard to imagine that he needs these surgeries just to survive but the cardiac surgeon reminded us of that fact. Ugh!

I know God is all over this but we would love for ya'll to pray for our little "Eef." He is such a strong little guy who is indeed a fighter (not to mention quite a charmer).

Thank you, friends! - h

Ethan's heart cath.

We are here at TCH for Ethan's heart catheterization this morning. Currently he is in the OR and the nurses said he is doing well so far. We got here at 6am and he was doing well despite the fact that he eats usually at that time. But by 8:15am he was not happy that we hadn't fed him yet. When the anesthesiologist picked him up to carry him the OR he immediately stopped crying and was facinated by the Superman hat thing he had on. Just like a boy! Of course, I was an emotional wreck watching him being carried down the hall!

The plan is for us to be here for at least 12 hours after the procedure and possible overnight. I will try to post updates as to what is happening when I have a moment. I suspect I will have less time once he wakes up.

Keep us in your prayers!
-heather

Update on Ethan

Ethan went to the cardiologist this week and we now have a date for the heart catheterization, August 11th. It will most likely be a one night hospital stay since he will be under general anesthesia. They are doing this to map out his heart exactly to prepare for surgery. This will help the surgeons decide what needs to be done and just how many surgeries it will take to do it.

This is where we ask all of you to start praying again. God has answered your prayers so far and we have truly been blessed. Please pray that they find Ethan's heart in a state that requires just the one open heart complete repair and no other surgeries. He is a strong little man but he is still so small. He is really growing well but it seems so wrong to operate on such a wee one. Also pray for me that I can be strong for "Eefan" while he goes through this (we all have taken to calling him that because its how Abby says it).

Thank you, friends. -h

Our first family pic!

So! Time to get on the computer is a HUGE luxury at this point. I have so much to say but oh so little time. It seems like when you get one little one settled down, the other starts up and if they are both sleeping (rare) Abby makes sure she gets noticed. All I can say is thank God for my mom being here. We are so blessed to have both of the twins home now and I feel like I can finally start trying to figure out how things are going to work in the Harmon household now. One thing I am starting to realize is that when my mom leaves, I am in trouble. It looks like we will need to look into getting a nanny for a bit.

The twins are doing very well. They had their two month doctor appt. last Friday and it went well. I do have to say that I was so proud of myself for getting myself and the twins out of the house all by myself that morning and was actually on time! Now if I could only add Abby to the mix, I'd be fantastic. : ) Lauren weighed a whopping 8 lbs. 6oz. and was 20 inches long. To me she looks so chubby compared to the 3lbs. 15oz. when she was born. She was also two weeks past her due date at this weigh in and was only 2 oz. bigger than the day Abby was born! She looks great though and is still holding true to the "feisty" label. She also is off the apnea monitor. We are so excited to have a "cordless" baby!

Ethan weighed 7lbs. 6oz. and was 19.5 inches long. Smaller than sister but such a miracle that he continues to grow so well. They got their first round of vaccinations and the nurse had to go and get shorter needles for Ethan because his legs are still too tiny for all those shots! He also saw the cardiologist this week. He said as long as he continues to grow so well, surgery can still be put off six months or so. If he starts not to grow so well, we will have to reassess the situation. At the next appointment he will have a chest X-ray and Echo cardiogram to made sure everything is still stable. He thinks that they will do the catheterization sometime at the end of summer or early fall. Could be an overnight hospital stay and I am already nervous for that!

Abby is doing very well too! Someday she will kill me for announcing this but she went to the bathroom on the potty for the first time on Tuesday. So exciting!! We had definitely planned on having this part of toddlerhood behind us by this point but with all that is going on, it didn't happen. Plus, she still tells us she is not ready. She is also becoming quite the swimmer (I'm so proud) now that we have a swimming pool in the back yard. We so did not want the pool when we bought the house but now it is really nice having it. Poor Abby would hardly ever get to go swimming this summer if it weren't right there.

Abby also is such a great helper around the house with the babies and she just loves her "Eefan" and Lauren. She is a great mommy to her baby doll now too. It's too cute!

Gotta run, its feeding time!

Love, h


Home at last! 6-5-09

First car ride together...(notice no room for Abby, more on that later) 6-5-09

Ethan came home!!!

I am sorry I have not been on to update lately. I thought one infant was hard...ugh! Ethan came home on Friday June 5. One day after the twins' due date! He is doing amazing although we are super nervous that something will happen at home with his heart. We went from maybe he needs surgery before coming home a couple weeks ago to him being very stable and getting to come home, so you can imagine our raw nerves. It turns out the culprit for his low stats and apnea was ....REFLUX! Some of you remember all that we went through with Abby's acid reflux issues. If I had known that it could actually cause her to stop breathing, I would have freaked out!

So, Ethan came home on an apnea monitor as well for which we are very grateful. We had a great talk with the cardiologist before he came home and we are feeling a little more comfortable. We will always have to be more aware of his cues health wise, it's just part of having a kid with cardiac issues. But as of now, things are stable. The plan is to be followed every couple weeks as an outpatient with the cardiologist and he is thinking surgery will take place at 6 to 9 months of age. So sometime this fall he will have a catheterization to get a detailed picture of his heart and what needs to be repaired. Then, based on that information, they will come up with a surgical plan. It could be one big surgery or a couple procedures and one "complete repair."

I will update more about how they are growing and Abby soon. I will also post pictures of the family as we finally have them all downloaded. But right now, I have to go and feed the munchkins. We are so blessed to finally all be under one roof and we are just trying to get used to being a family of FIVE!! Thank goodness my parents have been here to to help. We are outnumbered!

Love, Heather

This is the day The Lord has made...

I just kept singing that old song to myself these last couple days as I drove to the hospital to see little Ethan. If you are from Houston, you know that the weather has been from Heaven these last couple days. Since I was in the hospital all of February, March, and half of April, I didn't get to experience the few spring days we have here so God provided a few so I didn't miss anything! Of course, the only time I really have to myself is the 20 minutes on the way to the hospital now that little Lauren is home. YAY!!

She came home on Friday afternoon and well, you can see I am just now (6 days later) getting on the computer to update you all! She is a great baby but we are still tired. What was I thinking having two at once?? : ) She is a pretty happy baby and does well in the car. That is good since I have been taking her back to the hospital to see Ethan everyday. She does have reflux which causes her to be pretty uncomfortable. Ethan actually has it too. I keep saying we should rename them Sir Grunts-a-lot and Princess Grunts-a-lot.

Ethan is having a battery of tests today to figure out if the drop in his stats lately has been due to his heart condition or from reflux. I will update more later when I find out. We are having a meeting with the cardiologists today as well.

So! I have to go feed the little lady and then off to the hospital to see the little man. I will update more later. BTW, Abby is doing pretty well with Lauren coming home and while she is a little more clingy with Bill and I, she is doing great. She is so resilient with all she has been through.

Thank you for your prayers!!

Love, h

Keeping Our Fingers Crossed...

Lauren has been doing very well so it looks like she will be coming home this week. She would be coming home tomorrow but we are insisting that she comes home with an apnea monitor so she has to have some tests tomorrow and the pulmonary doctors need to take over her case. So now they are saying probably Thursday. The doctors really don't want to send us home with a monitor because they say it causes undue stress on us because of false alarms. This is probably true but we will have "undue stress" if we don't have it! We watched Abby like a hawk the first couple weeks so I can only imagine how crazy we will be with a 5 pound preemie with a history of just stopping breathing for 20 seconds or more. I bet when Ethan comes home we will require a full time nurse and a doctor to stop by daily. I am just kidding of course...kinda. : )

Speaking of the little man, Ethan is now in a big boy bed too!! He didn't fail the test twice like his sister. He was put in the crib and has been holding his temperature pretty well ever since. He is so cute. He looks around like he is thinking, "Whoa! So this is what the world looks like outside of the box! Cool!" He has been getting better at taking a bottle and gets 3 a day. The rest goes in through a feeding tube. He probably could take more from the bottle but he gets so tuckered out from bottle feeding that its just too much right now. He has to build up to it. He is such a trooper!

I was told Ethan is at least 2 weeks from going home so no chance of him coming home too this week. It's okay, they say I can bring Lauren back up to the hospital when I come to visit Ethan.

More soon! Love, h