Ethan Out of His (Hopefully) Final Surgery

Ethan is out of the ICU and doing pretty well. We are back on the cardiac floor so they can watch his heart a bit more but all seems to be pretty normal. He isn’t eating too well yet so he is still on IV fluids until he can. He is also in what seems to be a lot more pain than he had with his heart surgeries. It makes no sense as they both seem like they would be extremely painful. He is such a champ and is handling this waaaaaaay better than I would be in his situation. They say kids are so resilient and Ethan is proving this to be 100% true.

The surgeon was very pleased after the surgery and hopes that after all the healing takes place, he won’t have to have anymore surgeries on his head. He said when he took out the section of bone that was the huge indention or headband looking part, the rest of the head popped right into place. Even now, we can see a marked difference. Of course time will tell. The plan is to go and get fitted for his helmet on November 30 and then get the helmet sometime later that week. After that, depending how he heals, he will keep the helmet on for anywhere from 6 weeks to 3 months or so.

So praise the Lord things have gone so well so far. After all we have been through, the Lord continues to guide us, comfort us and bless us. He has never left us and although this surely hasn’t been our timing, His timing has been absolutely perfect. Your prayers have been critical to us and we are so blessed by your encouragement.

-h

Surgery Tomorrow

Well, the day has come for Ethan's last surgery (at least we pray it is his last for a good long time). His cranial surgery is tomorrow, November 17th at 10am. The surgery will be a little tricky for the surgeon as it is normally performed with the patient facing down for the surgery. But due to Ethan's fragile heart and sternum, they need to do it while he is on his back. We pray that the surgeon (Dr. Luerrson) will be able to reach and see all he needs to so we don't have to go back into the operating room in the next couple months. So that is one prayer request. The other is that the helmet Ethan will wear for the next few months after surgery will heal him correctly so he will not need any further surgeries on his head in the coming years. This is one thing we would love to get over with and not have to revisit...ever. But this is Ethan Harmon and he likes to do things the hard way sometimes. So we will see and all kidding aside, we know that God is in control of all of this and His will be done.

I will update tomorrow when I hear something. This surgery should not be as long as the heart surgeries and less risky in that he won't be going on bypass. But is still cranial surgery and there is usually alot of bleeding because it is such vascular tissue. Thank you, friends, for your continued prayer and encouragement for the last 2 months. It really is what is helping us get through this time.

In Him, h

Ethan is Home!!!

Well, Eef the Beef is home!! We are elated to have our wee one home with us and we are really enjoying having a PINK baby for once. Since he was born, he always had a blue hue to him, especially when he was upset. Then, after the first surgery with all the hemolysis going on, he was yellow with jaundice. Now he is finally PINK!!! I know one day he will hate that I desperately wanted him to be pink because that is for girls and blue is much better for boys but I am not ashamed one bit for wanting a pink boy!

He is doing very well and is "cordless" for the first time. It is strange to carry him around and dress him without worrying about his monitor cords. As far as his heart goes, he still has a bit of a murmur because the patch between the ventricles leaks a bit. It's not that the surgeon messed it up, its just impossible to seal it completely due to all the muscle fibers that they have to go through. Hopefully, the lining of the heart will grow over it and close it all the way eventually but if it doesn't, they don't expect that it will cause any trouble because the leak is so small. His heart appears to have decreased in size and the fluid is less around his heart and in his lungs. All good things!

Now we are finally on the cranial surgery. It has been rescheduled for November 17th. The cardiac anesthesiologists will do the surgery and he will be able to recover back in the CVICU in case something were to go wrong with his heart. The doctors all feel the most comfortable with this as the risks are greater to his fragile little heart. At least we know the staff and they know him!!

Another couple proud mama moments lately... Lauren got her first tooth!! She munches away on anything she can get in her mouth. So cute! And Abby Grace turned 3!!! She informed us that she is big now that she is three and she will be going on the potty soon but not today. Maybe tomorrow. UGH! She is just toying with us! : )

Your prayers have kept me going... -h

Ethan Got His Ticket Out of the ICU!

Well, barring any complications Ethan will be moved out of the CVICU and back to the regular cardiac floor again. This is great news because he is recovering well but we have really gotten to love our caregivers here in the ICU and bonded with many parents here. So its a bit bitter sweet because its kind of lonely down there on the 15th floor. The nurses have too many patients there and you kind of get stuck in your room because you are the main caregiver 24 hours a day. He is hooked up to all the monitors still so you can't walk around with him yet and you can hardly leave him alone for a couple minutes to go and grab lunch or dinner. I think it just occurred to me why I feel so trapped and claustrophobic there. I think I might be a little paranoid about getting stuck in hospital rooms after my 9 weeks stay this spring!

Anyway, enough whining from me ... Ethan is doing well!! Praise God! We are going to move this evening so once we get settled in, I will update more. The neurosurgeon is out of town this week so we really won't be able to plan too much for the cranial surgery this week. Plus I don't think the cardiologists are too keen on him going in for a third massive operation in 3 weeks. So I know it won't be this week but if everything continues down this path, it really could be next week. As a mother, I wish they would wait forever but I know its not an option.

Thank you so much for all you prayers and support. I haven't had much chance to speak with even my closest friends and family too much but I feel your love, encouragements and prayers and please know that we love you so much. And I hear each day about people praying for us that don't even know us and it is such a ministry to our family. You are so appreciated and you have blessed our family immensly with your prayers.

Love, h

Out of Surgery ... Again!

Ethan is out of his second open heart surgery. This one was much shorter but it did still involve putting him on bypass and all that. Basically, Dr. Fraser couldn't save the pulmonary valve he built in the first surgery. He said its too bad because it was still in great shape. But it had to be removed with the muscle they had to remove. We knew this was a possibility going into surgery and that there was a chance he would have to put in some sort of implant. We wanted to avoid the implanted valve because they don't grow with Ethan and it would need to be replaced in a couple years. But Ethan's anatomy is such that he can hopefully do well with no valve at all. The valve that was built for him in the first surgery was really only supposed to last about 6 weeks anyway. Sooooooo he has no valve. I wish I could explain further why this is but I can't begin to explain it correctly.

So for now, he is back in the CVICU and is stable. He is still intubated and very sedated but to me he looks great. We are back in the same room we were in after his first surgery. We are a little superstitious because it seems that all his issues started when we moved to the other ICU room. So we have requested NOT to be moved to room 5 this time. : ) - And yes, they looked at us like we were crazy.

Thank you God for holding little Eef in your hands. - h

"And he took the children in his arms, put his hands on them and blessed them." Mark 10:16

Round 2

The echo cardiogram today showed that Ethan's heart is under distress and that the meds did not help at all. So tomorrow morning, he is having his second open heart surgery in 12 days. They will try to remove the muscle mass that has positioned itself on top of his newly constructed pulmonary valve. There are a ton of risks here that I can't bear to go into right now.

Please pray for little Ethan who has been such a trooper with all he has been through. Pray that all goes well and that he stops becoming the exception and becomes the rule. In that, I mean everything that has happened to him in the last two weeks is just not normal. I can't tell you how many times I have heard, "We sure haven't seen this before" or "that doesn't usually happen" in the last two weeks. His little body has been through so much and he still has his cranial surgery looming as well. Please pray for healing and God's miracles on his wee body. And if you have a moment, pray for Abby and Lauren as they have seen very little of their parents (especially mommy) in the last couple weeks. They are handling it just fine thanks to my parents. Actually its mommy who has been having a hard time with it! : )

Your prayers mean so much to us. -h

Maybe headed back into the operating room...

Well, I haven't had much time to update lately because Mr. Ethan has been very awake and his usual high maintenance self. For a time he even had more IBS (Irritable Beef Syndrome) than usual. It turns out, it was narcotic withdrawal! I know, crazy, right? He had to be so sedated the five days between his scheduled surgery and actual surgery because of his Tet spells and then after surgery for pain that he became addicted. My baby is on Methadone to ween off the drugs!!! Apparently this is pretty common but I never imagined I would be able to say that my 6 month old is a drug addict. : )

Soon after my last post, the breathing tubes came out and shortly there after, we noticed some blood in his urine. We figured that it was just trauma from the Foley catheter but of course it was not that easy. It was not actual red blood cells but blood parts. At first it was thought that this was some sort of transfusion reaction because his red blood cells were dropping dramatically causing him to need two more transfusions. Now the thinking is a bit different. Somewhere in his body, probably in his heart, the red blood cells are being broken apart and leaving his body through his urine. The process is called hemolysis. They say they usually see this in other kinds of heart procedures where they put in artificial valves and such but not usually in Tetralogy of Fallot patients. While his red blood cell count is still dropping (possibly leading to another transfusion) the hemolysis seems to have slowed down. This is mystery # 1.

Now on to mystery # 2. His heart rate became elevated and his oxygen saturations in his blood lowered a bit on Saturday. This earned him an extra night in the ICU but we are now in the regular cardiac unit hospital rooms. After repeated echocardiograms and many discussions between cardiologists and surgeons, it has been discovered that the pulmonary valve that was constructed during his surgery has some sort of muscle bundle on it causing the valve to actually obstruct the flow through the main pulmonary artery. A couple weeks ago, not a problem. He had a bunch of collaterals and a hole between the ventricles to kind of make do. But now that all this is repaired, big problem. He is on a beta blocker to slow his heart to allow the heart to work more efficiently past this obstruction. If this works, it may be a longer term solution. If not, we will be back in the OR probably in a few days. We are having another echocardiogram tomorrow to help make the decision.

Leave it to Eef to be the case that has completely thrown the doctors for a loop since the beginning (remember the flu tests??). He is hanging in there and is such a strong little munchkin. We thank you again for all your prayers, we still need them!

-h

Moving along...

Well, Ethan is still in the CVICU and he is intubated but seems to be progressing pretty well. They say here that anytime they are able to take tubes out and probes off, its a good sign. So this morning they were able to take the drain tubes out of his chest as well as a pressure monitor that was basically in his heart. They should start to try to get him off the breathing tube today so that is also a good sign.

He has had a couple episodes in the last 24 hours if what we so affectionately call "IBS" in the Harmon household. This stands for Irritable Beef Syndrome (we call him Eef the Beef). He apparently would wake up crying out of staggering amounts of sedation and basically hold his breath and bear down. I don't know if he thinks he can get the tubes out this way or if this is just his way of telling us he is not happy about his little situation here. Of course when his does this all kinds of alarms go off and he gets lots of attention. Now that I think about it, that is the reason... attention!! : ) While these episodes are a little scary, the nurses seem to have learned how to calm him a bit and get things back to normal. As a mom its pretty hard to see his stats drop again as we thought we were past all that now that his heart is repaired but no one seems too worried. But is does provoke them to be right on top of his sedation schedule and to always have extra nearby.

He will squeeze our hand which is pretty cute and will watch tv in a dazed, drugged haze. They are still evaluating whether or not they can do his cranial surgery during this hospital stay but if all goes well, they probably will do it, just delayed from the original date of the 19th.

Definitely still keep praying for him as he still has quite a bit of recovery to go. Being up here in the CVICU, I am seeing so many sweet little kiddos with devastating situations. Many of them so much smaller than Ethan. Even though this is probably the hardest situation of our lives, it could be waaaaay worse. We are truly blessed. I have gotton to know two of the families here (one we knew from the NICU) and while Ethan's situation is indeed life threatening, these two boys could pass at any moment and there really is not alot they can do for them. So I am thanking God for our little guy and even though he was a complex fix for the surgeon, I am praising Him that Ethan can be fixed.

You all have been so faithful in praying for little Eef and we thank you. Please continue to pray and add Baby R (6 mos) and Baby Y (20 days) to your list.
-h

Longest Day of My Life...

Well, little man is resting back in the CVICU and looks pretty good for all he has been through. He keeps trying to wake up and fuss and they have to sedate him further. We keep telling them (docs and nurses) that it takes A LOT to sedate this little munchkin but nobody believes us until they experience it. He does still have in the breathing tube which is a blessing for now. He has way too many lines coming out of his wee little body that he would just love to get his hands on. His blood pressure is a little high so they are keeping and eye on that and giving him some meds for that. Other than that, he is stable. Praise God!!

We finally talked to the surgeon about 5:30pm today and he said that it was a complicated procedure due to the way Ethan's heart formed. Before the actual repair, they had to close off some more collaterals they didn't know about. They were tiny but were not allowing Ethan to get on the heart/lung bypass machine properly because the pressures were lowered with them open. They patched the VSD (hole between the ventricles) with some of Ethan's own muscle from another part of the heart. He also widened the pulmonary artery with the same sort of patch. Apparently Ethan really didn't have much of a pulmonary valve to speak of so Dr. Frasier reconstructed it as best he could. He chose to not use a synthetic valve or a human cadaver valve as it would not grow with Ethan and probably force him into surgery again in a few years. With the reconstruction that he was able to do, it will leak and eventually need to be fixed again but hopefully not for a decade or two. Apparently Tetralogy of Fallot patients do pretty well with this kind of reconstruction.

I know there is a ton more they did in there but I think I hit the main parts. He came off of bypass very well and is doing well. The surgeon said that in surgery they did not see any signs of him having the flu or being sick based on the secretions they were monitoring so lets pray that nothing develops. So, while all is well, he just had major surgery. Please pray for no complications and that he comes out of this like a champ.

To God be the glory! -h

Ethan is in surgery....

Well, the day is finally here. I have to say that I wasn't sure it was ever going to happen so I was really a little caught off guard when the anesthesiologists wheeled his bed out of his ICU room down the hall to surgery. He had been pretty sedated for most of the weekend but as the weekend progressed, his stats were not looking so good. He had a pretty good "Tet spell" when I was there on Saturday morning that was pretty scary. This is when his oxygen saturation in his blood drops extremely low causing him to turn blue. Usually when this happens to Ethan, he is screaming. But this time he was completely calm and didn't come out of it right away. Normal saturation levels are 96-100% for us but for Ethan, his normal is 75-85%. During this spell, they hung around 30-40%. Saturation this low for any period of time can cause brain damage so this was pretty scary. Also, this morning his heart rate kept dropping as well. I guess just another sign that its time for his heart to get fixed.

He still has no signs of flu or sickness but everyone is still being cautious. He has been in the OR since 9am but it takes about 3 hours of prep just to get to the actual surgery. Last update we had, they were just about to put him on the heart/lung bypass machine. Then his heart will be repaired. After that, the tricky part is getting him off the bypass machine. I will update later as I hear something.

Thank you all for your prayers. -h

And the curve balls keep on comin'!

I am not a huge baseball fan but I think I do understand that if the pitcher throws you enough curve balls, you should start to expect them and adjust your stance accordingly. Right? Too bad I didn't adjust my expectations sooner because now I am confused and disappointed again. It's my prayer to not get so hurt and emotional each time one is thrown, but to be strong and clear minded and ready to celebrate each success with little Ethan.

The last 36 hours have been one curve ball after another. Wednesday evening, we got some very strange news. They told us that Ethan had the flu. It was influenza "A" but were not sure what particular strain at this point. Might be H1N1, might not. Yesterday before the cath they kept asking if he had any cold or flu symptoms and my answer was always a confident no, but his twin has a bit of a cold. They went ahead with the cath not seemingly concerned about this info. That evening, they were doing some pre-op testing which included a flu test due to the fact that it is spreading so rapidly. Lo and behold, it was positive! We were stunned. The plan was to still go ahead with surgery since he had no symptoms and they had closed off some of his blood flow to the lungs in the cath lab. Can we say "between a rock and a hard place???" But then he developed a low grade fever overnight. Dr. Fraser (the surgeon) made the call Thursday morning not to put him at risk and to put surgery on hold and see what, if any, symptoms develop and plan on maybe operating on Monday or Tuesday.

So then Thursday afternoon, they had Eef's breathing tube removed since surgery was not on the immediate horizon. He is on oxygen, though, due to the fact that he has very little oxygenated blood flow going to the lungs on his own now. He will stay in the CVICU until he does have surgery due to the fact that most of his collaterals are closed and his pulmonary artery is still unrepaired. He was still a little sedated and sleepy Thursday afternoon so Bill went home and I was just hanging out here with him should he need me. Then I get yet another curve ball that I tell you I really wasn't expecting. The more definitive tests were back and his flu test was NEGATIVE!!! Yes, you read it correctly, now they are telling me they are NEGATIVE! No flu! By the way, when we thought Eef had the flu on Wednesday evening, we rushed the girls to the after hours pediatrician to get tested and they both tested negative as well. We thought their tests were probably wrong since surely TCH wouldn't get Ethan's wrong! Our whole family is on Tamiflu now for ...well... no reason! : ) Also since his first reports of fever, Ethan has had pretty normal temps.

We are still in a holding pattern but for much different reasons. They couldn't go ahead with the surgery today because there was an emergency case today that required so many resources that all other surgeries were also cancelled. At first I was a little irritated but then realized that I would want them to do that for my child if his life was on the line. I hope that everything went well for that sweet child. Ethan also has quite a bit of congestion now that I think is in part due to being intubated but we want to be safe and sure of what it is before we proceed.

So we are hanging out here indefinitely. Ethan wanted out of here earlier today and really could not be consoled. The problem with him getting so upset is that his stats drop dangerously low now that they have closed some of the collaterals. They tried many different sedatives this morning and Eef the Beef just laughed at their efforts. They were shocked at how much it took to calm him down. Of course, I am thinking, FINALLY someone understands what I go through with this little man daily. Even the baby narcotics couldn't calm him down!! : ) But he finally gave in 5 hours later and is sleeping soundly as I type.

I have my moments (quite a few actually) where I feel sorry for myself and all that we are having to endure. It seems nothing happens normally or as we expected lately but then I see the families who are also here in the CVICU. While in the waiting lounge earlier I overhead a family talking with a friend about a transplant with only one good lung. There are several patients here in heart failure which is eventually where Ethan will be if his heart goes unrepaired. But it is not him today and we are grateful. So what if we have to wait a few extra days and our lives are completely turned upside down for a little longer than expected. We have Ethan now and as the song I heard on the way to the hospital this morning says, "I will praise you in this storm."

Stay tuned! I have a feeling that the roller coaster ride has just begun...
Love, h

Resting comfortably...

Ethan is out of the cath lab and doing very well. He actually tried to wake up out of sedation so they had to give him some more "juice" to make him sleep. They want to keep him sedated because they don't want to have to reintubate him in the morning and they already prepped him for surgery with all the necessary IV's and such. So for now, he will just rest in margaritaville! As I look at him I am amazed at how much he has grown. The last time I saw him all "tubed" up like this he was in the NICU and just a wee one! He looks like a little boy now!

I know, you're thinking yeah, yeah, get on with it. How did the cath go? Well, it went as expected for the most part. They only closed off one of the collaterals and found the other to be so small that if they tried to block it, they risked loosing the coil they put in to close it. The third, the surgeon will close, as I mentioned earlier. So, barring anything unusual, we are go for tomorrow's surgery. It will be about a 6 hour procedure starting at about 7:30am so I will have some time to update during it.

Please pray for the anesthesiologists and the surgeon, Dr. Fraser. They do this stuff all the time and are the best in this part of the country at what they do. But God is in control and we pray for His guidance for them. Pray for "Eef the Beef" as he is known in the Harmon household. This is alot for a little 13.2 lb. man. Although I have seen some teeny ones here in the CVICU helping me remember what a little fighter he has been. Pray for Lauren and Abby as they seem to have some sniffles and Lauren with a bit of fever. I hope we got Ethan out of the germs before he caught anything and please pray we don't get anything or we can't go see him. And finally, pray for Bill and I. We have not had much sleep lately making this all that much more emotional. Whew! That's a long list!

Thank you, friends and family, for your prayers and support. We can feel them!
-h

In the Cath. Lab now...

We made it here this morning and so far, Ethan has not come down with whatever Lauren has right now. He was in really good spirits and I just got the call that the catheterization is underway. It should take a couple hours still but so far the nurse said that Ethan is doing great.

So, what they are doing is closing some of the "collaterals" that formed to move blood to the lungs since his pulmonary artery is too small at the moment to do its job (the surgeon will make it bigger tomorrow). These collaterals are extras that formed during development that the normal heart does not have. The doctors always say its "Nature's way" of taking care of a malformed heart but we know, of course, its God's way of helping little Ethan along until he could have surgery. Up until now, that is really how Ethan has been living. He has depended on these collaterals to move the blood to the lungs but he is getting bigger and they are just too tiny to sustain him for too much longer. If you have seen Ethan recently, you can tell that he is just a bit more blue in color at times than he used to be.

They are closing most of the collaterals that the heart surgeon cannot reach during the open heart procedure. They probably will leave one of the bigger ones open that the surgeon can reach so that he can get enough oxygenated blood to the lungs until tomorrow morning when they will fix his pulmonary artery and valve. The risk is that even closing just one of these collaterals will cause him to have a "Tet spell" and he will have to have emergency surgery today.

We thank you for your prayers! And we'll keep you updated. Now I have to go and call home to make sure the girls aren't driving my dad crazy! : )

-h

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

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

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

ahhh nuts! back in the incubator...

Well, little Lauren Kate was doing well and looking to come home as soon as the beginning of next week but had a small set back. Nothing serious. She is just having trouble holding her body temperature on her own. This is very common in preemies. We keep having to remind ourselves that she is a preemie and that she is really at 35 weeks gestation. She just acts so much like a full term baby most of the time.

Ethan Matthew got his nasal cannula off yesterday and he looks so cute with nothing on his face but a little feeding tube. The cardiologists asked the neonatologists to take him off the oxygen support because they were trying to get his stats to look like a healthy kid but not taking into account his heart defect. Cardiologists get a better picture this way of how his heart is functioning. He seems to be doing really well. He is still pink as ever and is active as well. He seems to be comfortable and his heart does not appear to be overworked at this time. This could change at any point, of course, but right now he is stable. Ethan is slowly gaining weight and is learning to drink from a bottle. I get to give him one a day and the rest goes in by feeding tube. I talked to his nurse last night and found out that he peed all over her last night. So much that she needed a new shirt!! I know she was probably annoyed but I thought it was hilarious. It made me feel better since the first time I changed his diaper he did the same to me! I blamed it on my inexperience with changing a boy diaper but he even got the nurse who does it everyday. I was so proud! ; )

I was totally kidding about the swine flu on the last post but now I am a little concerned. Since the "outbreak," Texas Children's Hospital has been swamped. Tonight I walked through the lobby down by the ER and they had set up extra chairs everywhere to handle the huge influx of people there waiting to be seen by a doctor.

Thank you for your prayers. God is good!
Love, Heather

Lauren is in a big girl bed!!!

The doctors decided today that our little rockstar needed to go into the open air regular crib. This is the next step in getting to go home, maintaining her body temperature. So far today she is doing well. Wouldn't you know that my again hormonal mind gets going and I start freaking out that someone is going to give my newly exposed baby the swine flu! : ) But seriously, we need to get the car seat ready because as Bill likes to say, this little girl is not interested in being a preemie.

Love ya'll,
Heather

I can't believe I started a blog!!!

Lauren 4-11-09 Ethan 4-11-09

I always said that I would never start a blog. Not because I have anything against them, but maybe because I thought it would make me sit on the computer longer than I already do! Now I realize that I need a better way to keep everyone updated about the babies progress soooooooo... here we go!

The twins arrived on April 11, 2009 with Lauren Kate weighing 3lbs. 15oz. and Ethan Matthew weighing 3lbs. 8oz. This is huge considering I went into the hospital at 23 weeks for preterm labor and they predicted they each weighed about 1lb. It was imperative to keep them in as long as possible because Ethan suffers from a congenital heart defect called Tetralogy of Fallot. The cardiologists said the course of action would depend on how "blue" he was when he was born. Turns out, he wasn't really blue at all. This was good for the immediate future but meant more surgeries in the future to fix the collateral vessels that grew to compensate for his pulmonary stenosis. In other words, these extra veins are providing enough blood to the lungs while he is still small but will not be enough as he gets bigger. They will need to be rebuilt before he can have his "complete repair" of his heart. He was intubated when he was born but was extubated and put on a CPAP later that day.



Lauren, Mommy and Abby 4-18-09



Ethan with no tubes before his CT scan 4-17-09

Lauren was also put on a CPAP when she was born but wanted nothing to do with it and by two days old, she was officially on room air with nothing to help her breathe. The nurses said that they were tired of her taking the CPAP off so they decided to try her without it. She has been off ever since! This was when she earned the description in the NICU as "the feisty one." I actually overheard the attending doctor tell her residents "This is not a normal 32 weeker. Please don't think they will all progress this well!" Music to our ears!! By a week old, she was taking all her feeds via bottle and had no IV's or tubes. We even dress her now!

Ethan has been progressing really well too. He was breathing completely on his own as well until they had to intubate him to do a CT scan and he has been on a nasal cannula ever since. He is not on a huge amount of oxygen but we can't seem to ween him off again. The doctors were able to see quite a bit with the scan and decided that he was stable enough to wait on surgery until he gets a little bigger. Things could change in a blink but for those who have been asking, we have no idea when his first surgery will be. We hope its not for awhile so he can put some weight on those scrawny legs! He possibly could come home before he has surgery but time will tell.

Both kiddos were so stable that they moved them from the Level 3 NICU to Level 2 NICU. It was hard on me to have them moved from such specialized care to a more laid back environment. I, being the overprotective, hormonal mom, thought my teeny little ones weren't ready for the big 'ol Level 2 NICU. But they have proved me wrong yet again. They are doing very well there and have both surpassed their birth weight as of today (2 weeks old!).


Lauren the drama queen 4-21-09


Ethan's first bottle 4-22-09

Lauren chillin' in her new digs (Level II NICU) 4-23-09

Abby has done really well through this whole process but is a little scared when I am not there to pick her up from school. She is a paranoid I am going to stay in the hospital again. I don't blame her, I don't want to go back in again either! She did get to spend lots of quality time with daddy as well as her Paw Paw, Mi Mi, and Uncle David. They were angels sent by God to take care of my little munchkin while I was away. Bill needs an extra special Father's Day this year as he has earned it 100 fold this year. All I can say is that he is Super Dad.

I am finally getting my energy back as well. After 9 1/2 weeks in bed, not even sitting up for any period of time, my muscles are really weak and sore. I am building up my stamina again and healing pretty well. I am also feeling the stress of now having THREE kids to keep up with and two aren't even home yet! The Lord has really taught me to give up control through all this and let Him and others help me. Hard lesson, I'm getting there. I have no choice!

I will be sure to update here as I learn new info. Please keep us on your prayer lists as we are not even close to being out of the woods with the twins. I know Ethan's trials are just beginning. I keep saying, its hard to think anything could be wrong with our little guy. He just looks so perfect. He smiles like crazy and while I know its probably gas, I choose to believe he is smiling at me! God has been so good to us through out this so far and I know He will see us through this. Thank you to our friends and family for all your prayers, encouragement, meals, and help. You mean more to us than you can ever know.

Love,
Heather, Bill, Abby, Ethan, and Lauren