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
Friday, July 24, 2009
Friday, June 26, 2009
Our first family pic!
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
First car ride together...(notice no room for Abby, more on that later) 6-5-09
Thursday, June 11, 2009
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
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
Wednesday, May 20, 2009
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.
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
Monday, May 11, 2009
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
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
Thursday, May 7, 2009
well....
We thought Lauren would be coming home tomorrow but it seems she had other ideas. She must have overheard us talking about Ethan being in the hospital all alone and decided to buy herself a couple more days there. In the last couple days, she has had a couple episodes of apnea which they are thinking has to do with reflux/eating issues (yep, you heard me, another one with reflux!!!) and are not terribly concerned. They just want to observe her a few more days and hope this resolves.
I'll post more later. I just wanted to update as we have had many questions about whether or not she is coming home.
Love, h
I'll post more later. I just wanted to update as we have had many questions about whether or not she is coming home.
Love, h
Monday, May 4, 2009
Great day for the kiddos... sad day for mommy
My mom left today to go back to Ohio. I kept telling her I had THREE kids now and she can't possibly leave me but she assured me I could handle this and she would be back this summer. It's funny how I spent so much time when I was young trying to grow up and get out from under the parent's umbrella and now I was begging mom to move in with us! I mean, Abby already calls the guest room "Mi Mi's room." What more could she want?? : ) She is, however, sending my dad down next week to stay until she can come back. She is a teacher and has to finish out the school year and then it's back to Texas. I am so grateful he is coming because he is the best baby holder there is. He is so patient and calm so I know that he will be a great help with the babies and Abby has her Paw Paw wrapped around her finger so she will have a great time with him too.
Enough whining from me!! Now on to the kiddos! We got some of the best news today we have had since this whole saga began back in February. We finally got the results to Ethan genetics tests. Apparently, they didn't even test for Down's because none of the doctors thought he had any of the physical signs. They did the test for diGeorge Syndrome/Velocardialfacial Syndrome which is very common with Ethan's heart defect and it was...wait for it... NEGATIVE!!! So, as far as we know, he only has the heart issues. What an answer to prayer! We had come to terms with the fact that he might possibly have Down's or DGS but after meeting our little guy, I asked God to spare him from anything else serious as he will deal with his heart issue the rest of his life. He is just so small and I hated for him to have to carry the burden of anything else on his wee little shoulders. He has an uphill battle with his heart but today, we are celebrating answered prayer and God's grace. YAY!
Lauren had a great day too! She has been doing great with holding her temperature in the last day or so and after two failed attempts last week, she is back in her "big girl" crib. They are looking at her coming home towards the end of the week. I have to take a CPR class before she can come home and she and I have to pass our car seat tests. She has to be able to hold her stats while sitting in her car seat for an hour and I have to prove that I can safely strap in a preemie into our car.
I need to post some more pictures but I haven't had time to download them. I took a great one today of Ethan. He has so much hair and this little cowlick in the front that I just love. I always tell the nurses that I love when his hair sticks up so when he has a bath, they always try to keep it messy for me. He looks like a little man! Well, last night his nurse made his little cowlick stick up right in front and he looks like Pee-Wee Herman! So funny! I tried to call him Pee-Wee Harmon but my mom said that was mean and I would give him a complex. Oh well, we got a good laugh anyway!
Thank you all for your prayers. They are working!!
Love, Heather
Enough whining from me!! Now on to the kiddos! We got some of the best news today we have had since this whole saga began back in February. We finally got the results to Ethan genetics tests. Apparently, they didn't even test for Down's because none of the doctors thought he had any of the physical signs. They did the test for diGeorge Syndrome/Velocardialfacial Syndrome which is very common with Ethan's heart defect and it was...wait for it... NEGATIVE!!! So, as far as we know, he only has the heart issues. What an answer to prayer! We had come to terms with the fact that he might possibly have Down's or DGS but after meeting our little guy, I asked God to spare him from anything else serious as he will deal with his heart issue the rest of his life. He is just so small and I hated for him to have to carry the burden of anything else on his wee little shoulders. He has an uphill battle with his heart but today, we are celebrating answered prayer and God's grace. YAY!
Lauren had a great day too! She has been doing great with holding her temperature in the last day or so and after two failed attempts last week, she is back in her "big girl" crib. They are looking at her coming home towards the end of the week. I have to take a CPR class before she can come home and she and I have to pass our car seat tests. She has to be able to hold her stats while sitting in her car seat for an hour and I have to prove that I can safely strap in a preemie into our car.
I need to post some more pictures but I haven't had time to download them. I took a great one today of Ethan. He has so much hair and this little cowlick in the front that I just love. I always tell the nurses that I love when his hair sticks up so when he has a bath, they always try to keep it messy for me. He looks like a little man! Well, last night his nurse made his little cowlick stick up right in front and he looks like Pee-Wee Herman! So funny! I tried to call him Pee-Wee Harmon but my mom said that was mean and I would give him a complex. Oh well, we got a good laugh anyway!
Thank you all for your prayers. They are working!!
Love, Heather
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