Saturday, September 29, 2007

Weekend Update

Tim is finally home! He got his deer yesterday and arrived home about 4:00 this afternoon. It was so good to see him. Today was my most challenging with Gavin. My morning was spent cleaning up hot chocolate powder spilled all over the kitchen. I had great aspirations to get the house cleaned before Tim got home but this just killed my motivation.

Ethan is doing really well and for the most part is off of his oxygen. Spencer's football team lost their first game this morning. Spencer was really disappointed. Emily continues to be very helpful and did a load of dishes this morning all by herself because she said I looked stressed.

I feel guilty talking about my "bad" days when little Ian and his family are fighting for his life. I have such a tender spot in my heart for these little heart babies and their parents. It was not that long ago when Ethan was born that I did not know if he would ever come home with us. It is so heart and gut wrenching. Even though we've had many good days to this point, one day it will be Ethan lying in a hospital bed waiting for a new heart. At this time I have the luxury of just imagining what it will be like. I have such a heavy heart knowing that the Pearson's are actually going through it. I wish I could help carry some of their burden.

Tomorrow a special fast is being held for Ian. Justin and Jenn have invited all who are willing to join in their fast for Ian. We will be participating. Please keep their family in your prayers. We hope and pray that Ian will get that miracle that we are praying for.


Friday, September 28, 2007

Positive Attitude

Given the circumstances of Tim being gone for a couple of days, I think that I have managed fairly well. And what I mean by fairly well is that I am still alive. The house is a mess, the laundry is not done, and 2 days worth of dishes are still in the sink. But to be honest I am not too worried about it. I figure that as long as people are fed, homework is done, and people aren't clawing each other's eyes out at the end of the night, then I consider it a good day.

My mom has been doing most of the shuttling of kids to and from school and sporting practices. Gavin and Ethan have each had their moments but overall they have both been pretty good boys. I've been bribing Gavin with fruit snacks to take naps. Whatever works. I am not sure when Tim will come home, I haven't heard anything yet. I think I am going to hit him up for a nice massage when he gets back though. Don't you think that's fair?

This positive attitude of mine may change in just a little bit. Friday's are early out and the dynamics change when all 4 of the kids are home for long periods of time. Friday's are hard. At least when Spencer gets home, he can keep an eye on Gavin while I take a shower. It's amazing what you take for granted.

Ethan is starting to laugh and giggle now. It is the CUTEST little laugh you've ever heard. It's so fun to see his own little personality develop. He has also learned to stick his whole fist in his mouth and gag himself. It seems like all of my kids have done that.

Well I can't say enough how blessed we've been. Thanks to all of you.


Wednesday, September 26, 2007

Post OP Appointment

We just got back from Ethan's post op visit at PCMC. We had chest x-rays taken, lab work drawn, an EKG done, and his vital signs checked. At this appointment he weighed 15lbs 4oz. His blood pressure was still a little elevated but he was also kind of fussy and moving when they took it. The MD didn't want to do anything about it right now because he is already on blood pressure meds. Everything else looked ok. They reduced his Lasix from 3 times daily to just once a day and they also took him off of the Aldactone. This is good news because he really hates both of them. The best news about this visit was that while on 1/2 liter of oxygen his sats were 91% and on room air it was between 81-84%. They said to wean him off of his oxygen for the next couple of days and as long as his oxygen saturation's stay above 80% then he doesn't need to wear the oxygen. If it won't stay above 80% then we just have to keep wearing it. Anyway, this was a great appointment and we don't have to go back to the cardiologist for 3 months. Yeah!

I went to Target today and picked up the pictures that we'd taken before Ethan's surgery. Despite it being such a horrible sitting, the pictures actually turned out rather cute. You'd never know that my children can be monsters.

Tim is leaving today for the muzzle loader deer hunt. I don't think it was an accident that he didn't mention this until last week. I think he knew how overwhelmed I can get and figured I couldn't say no when things were already in motion. He will be gone until Saturday. I hope I am still alive when he returns home. He is my rock.

We appreciate all of the support and prayers that we have received and we continue to ask for you to remember little Ian as well.


Monday, September 24, 2007

Ian Needs Prayers

At this time I would like to ask everyone reading this blog to say a special prayer for Ian Pearson and his family. His surgery did not go as well as hoped and is in a very critical period of recovery. It is so hard to imagine what their family is going through right now. It definitely hits close to home. Although they may not know you personally, feel free to post any comments of support on their blog. I am sure that they would appreciate all the prayers and voices of support. You can reach it through "Ian" under my friends link.


Sunday, September 23, 2007

Day by Day

This week was my turn to go to church while Tim stayed home with Ethan. It is always so nice to go and mingle with ward members and to be reminded why we are here. It definitely helps me decompress from the stresses of the week.

Not much is new with Ethan. We are still just doing the recovery thing. There are times when he seems happy and normal, and then there are times when he is still very fussy and needy. Last night he had a screaming fit which lasted at least 20 minutes, maybe even longer. I had tried everything to try and settle him down. I tried holding him, giving him his blanket and binkie, soft music, pain meds, feeding him, laying him in his bed, laying with him on my bed, walking him around the room. NOTHING would work. I was on the verge of tears and had to walk out of the room and let Tim take over. It can be so stressful and frustrating not knowing what he needs. I think he was feeling some of my anxiety at a certain point, because when Tim took over he was quiet in less than a minute. As grateful as I was to have him finally fall asleep, it makes me feel like somewhat of a failure as a mom.

Ethan has a follow up appointment on Wednesday with his cardiologist and the surgical nurse practitioners. I hope everything is doing well by their standards and maybe we can get off some of his medications. Med time is still dreadful.

I would like to mention that some good friends of ours, the Pearson's and the Homer's, are having some surgeries coming up. The Pearson's are sending their son Ian into surgery tomorrow. Ian was born the same day as Ethan and we were in the PICU together. His heart condition is different than Ethan's but he has since gone into heart failure and has been in the PICU for a couple of weeks now trying to get strong enough for his surgery. Also, the Homer's, who were also in the PICU with us, are going to be sending their son Alex for the Glenn surgery in about a week. He has the same condition Ethan has. Both Ian and Alex are on our "friends list" if you would like to get to know them better. Please keep them in your prayers. We know what the power of prayer can do, and I know that these are great families and would appreciate any prayers and support coming their way. These are very serious surgeries and very scary times as I can attest. I pray that all goes well for them and their families.


Thursday, September 20, 2007

Sanity? What Sanity!

Oh my gosh! Gavin is going to drive me CRAZY! I love that child to death but man he is in to everything. Just imagine two brand new packages of size 2 and 5 diapers. Now imagine them strewn all around my bedroom. Sound bad? Well, add a brand new box of cheese nips poured out in the middle of the room and crushed into various size pieces and now your getting a better picture of what my day has been like.

You may be wondering where I was during all of this? Well, I was trying to clean the kitchen that had been mostly clean but now has half soggy cereal and spilled milk on the counters, chairs, and floors from this mornings breakfast. Not to mention the "attempt" to clean it up by one of the kids by just setting a dish towel on a portion of the spill, which of course has dried, and the towel is now stuck to the floor. And no, I did not supervise breakfast because I was absolutely tired from another bad night with Ethan. If this was not my house and my children, I am sure I would find it more comical.

I feel like I have taken two steps backwards. Ethan the last couple of days and nights has been sooo fussy. I feel bad for the poor baby. I try everything and I can't console him. So because of this, I can't seem to get anything done. For example, it is 1 in the afternoon, and I still have not showered. Gavin is finally interested in a tv show which is how I have a minute to decompress by writing in this blog. I know every mother feels like this at times so I can't feel sorry for myself. The ward is bringing in dinner tonight which I can't thank them enough for. Even though it has been a bad day, I still have been blessed with great support and tomorrow is another day.

I know Tim has talked about having some 1 on 1 time with Gavin. I think he is just acting out because of the situation we're in. I hope it starts to improve. And if not, I hope he just takes a nap! :)


Wednesday, September 19, 2007

Restless Night

Well, the previous entry when I stated that I was getting enough sleep and was well rested? That just went out the window last night. I am not sure what Ethan's problem was but he had a big screaming fit in the evening and had a hard time going to sleep. Normally I just put him in his bed with his binkie and blanket and he just goes to sleep. But last night he kept fussing and fussing until I layed him down next to me. And then all through the night he was very restless and got up at least 7-8 times. The sad part is that he finally looks like he's sleeping soundly and I have to wake him up to give him his meds. My mom is picking up Gavin today to play at her house and so if I can get my laundry done early, I may be able to take a nap later on today. Yeah!

Gavin had a hard time yesterday. When the baby was sleeping he would intentionally yell and make these loud barking noises. He would jump on the bed around the baby. And then he would just laugh when I told him to be quiet and stop jumping. Jenn called in the early afternoon and came and picked him up which was such a blessing. There are days when it's not too bad to have both Ethan and Gavin, but when Gavin is in one of his moods, it is so hard to have a shred of sanity at the end of the day.

It sounds like the baby just woke up, so I will hurry and give him his meds while he is awake.


Tuesday, September 18, 2007

All is Well

I see improvement in Ethan each day. He is still very clingy and doesn't like to do any one thing for more than 10 minutes. I've started stretching out his Lortab doses but I've been giving the Motrin whenever it is due. I've heard of a couple of babies having withdrawal issues after all of the pain medications that they get with heart surgery and I want to avoid that if I can. However, if Ethan appears uncomfortable I don't hold out. He gets what he wants.

I feel like I am starting to catch up on some much needed sleep. I haven't been able to take any naps yet, but I am sleeping better at night. It's amazing how much it easier it is to deal with life when you are rested.

I appreciate all of you and your support.


Sunday, September 16, 2007

Home Recovery

Ethan is doing well at home. We've had no major problems, but Ethan is a 24 hour a day job. He is definitely in pain and we have to be very conscious of keeping up on his motrin and lortab. I feel like I am a human clock. I am constantly thinking of what time it is and when the next medications are due. I hate medication time. Ethan struggles, and screams, and spits, and this morning he even threw up all over himself and my bed. We then had to start all over. He doesn't trust us when we put anything in his mouth. He's not even crazy about his binkie anymore.

When his pain is under control, he does pretty good. He is still very needy and doesn't like to be alone. It is so hard to know what he needs. Tim always assumes Ethan is hungry when he starts to fuss because that used to be the only time he would get grumpy. But I try to feed him and there are many times that he wants nothing of it. Even if his pain is controlled, I just think he is uncomfortable and doesn't know what he wants. It makes getting anything done pretty hard. I just have to wait until he drifts off to sleep to try and take care of the house and the other kids. It may not sound like I do much, but I tell you, by the end of the day, I am exhausted. I will continue to write in these blogs as frequent as I can, but it seems that there are not many exciting things happening.

Gavin is home from spending the last couple of days with various family members. He was excited to see Ethan for the first time yesterday but he does not like his "owie". When I was changing Ethan's clothes, Gavin kept repeating "Don't see owie, don't see owie". He's been very sweet with Ethan but he still has a hard time being quiet around him. Gavin can be very loud and it stresses Ethan out. Spencer and Emily are still doing really well. Spencer made a great tackle in football yesterday and his team won. They've only played 3 games but are currently undefeated. Emily has been really helpful lately and is really enjoying her soccer. It's crazy how life just keeps moving on. We'll just keep doing our best to keep up.

Thanks to all of you.

Friday, September 14, 2007

Home Sweet Home

Yes, it is true. We were discharged from the hospital and arrived home around 2:30 this afternoon. They said his echo today looked the same as the echo they did after his surgery in the OR. They also said however, that he did have some mildly decreased function and a bit of regurgitation in one of his valves. This was the first I'd heard of any of this but no one seemed too concerned. It does concern me however because this if this ventricle looses too much function, it's the only one he has. I'll have to talk with the cardiologist about it when he goes to clinic on Sept. 26th for his post op visit.

Ethan has come home on 8 different medications which I have to give him all throughout the day and night. And for the most part he is pretty pleasant. He definitely gets grumpy and cries a lot when it is getting close to time for his pain meds. And he doesn't like to be alone. If I even leave the room, he will usually start to fuss.

I had been told prior to his surgery that most of his recovery period would take place at home, but I'd never expected to get sent home this early. I didn't even have any of his clothes at the hospital for him to wear home. They had to give me a T-shirt. I know that he went into this surgery strong, but he came home in the amount of time that our C-sections go home where I work. And this is obviously more extreme. In fact, I felt like we were behind schedule when they couldn't get him off of the ventilator as soon as they would have liked. But after that happened we just went on warp speed. It makes me feel like I was over reacting and that people won't believe me when I talk about what a serious, life threatening, heart condition he has.

I shouldn't be baffled at his strength and his determination to beat the odds. I know that we've been blessed with an amazing support system and that the Lord is watching over us. But because we have been so blessed, I feel an extra pressure to live worthy of those blessings. I feel so indebted to all of you. I know that Ethan has a mission to fulfill on this earth and I am so glad to see him doing well.


Are They Crazy?

Well, I ended up staying the night at the hospital instead of Tim because the hospital called and said Ethan would not eat out of the bottle. They were concerned that he was going too long in between feedings and needed to have more intake. So, of course as soon as I got there he wanted to eat and did just great. He was actually in a really good mood and it was so nice to see the light in his eyes again and an occasional smile.

This morning when we woke up he was again in a great mood and is beginning to let his personality shine through his crummy situation. They brought him in a swing which he loves and all morning has just been swinging and watching tv.

Now here is the crazy news. When the doctors made rounds this morning, they said they were going to remove his pacer wires and get another echo today. And if all goes well with that, then they will probably send him home! Are they sure? Did anyone forget he just had open heart surgery? Well, I have to assume that they know what they are doing, but it sure scares me to take him home so early. Maybe I am just basing this on the last surgeries time line. I knew that this one goes much faster. They had told us to plan on 7-10 days. But today is only day 5. I guess we'll just wait and see.

It is so funny to hear all of the staff that see him for the first time. They all say that he is too "healthy" (meaning chubby) looking for a heart baby. I just have to attribute all of this to all of the prayers that have come our way for a good outcome. I know that we are being watched over. (I only wish I could attribute my "healthy" shape to divine intervention). I will update more as I hear. Who knows, we may be sleeping together as a family tonight. :)


Thursday, September 13, 2007

We're Outta There!

Today has been a great day. When I arrived at the hospital this morning they were preparing to transfer us out of the PICU up to the surgical floor. When we got up to our new room it was so nice to see a recliner to sit in, a parent bed to sleep on, and a personal bathroom. It may not sound like much but it makes a huge difference when you are there all day. It is also much quieter than the PICU. He actually seems to be resting better.

Today he got his arterial line out. So all he has left is one IV, pacer wires, oxygen, and then the leads checking his vitals. They also switched him from all of his IV medications to oral meds, so hopefully if his current IV goes bad they won't have to even start another one. They leave the pacer wires in usually until they are close to going home because they are surgically implanted on his heart and can't be put back again if he were to have an irregular heart beat. Luckily though we haven't even had to use them this time.

I think Tim will be the one to spend tonight at the hospital and I will stay there Friday night. I think it will be good to rotate so that we can each spend some time with the other kids. They all seem to be dealing with all of this rather well. Again, I just wanted to say thanks for all of the help with babysitting and rides to and from school and sports. It takes a lot of stress and anxiety off of me to know that they are being taken care of and that their lives are hopefully as normal as possible during this time. Like I'd mentioned earlier, there is absolutely no way I would have been able to do this without all of you and your help. And I can't forget to mention the meals that the ward has been bringing in. They have been such a blessing. After spending all day at the hospital and then trying to get homework, laundry, and all of the other various household requirements taken care of , it is such a blessing to not worry about what to fix for dinner. I'd better be careful though, I might have to become a better cook after my family gets such great dinners. Thanks again to you all.


Wednesday, September 12, 2007

He's resting better

Ethan seems to be doing much better now. His blood pressures are coming down which I think helps with his headaches. I was even able to start breastfeeding him again, however it is kind of awkward with all of the lines and tubes. In fact the second time the nurse handed him to me to feed, his arterial line tubing became disconnected and blood just started spurting everywhere. I quickly reconnected it and she made the comment that she was so glad that I was a nurse, not only to have fixed it, but so I didn't freak out with all of the blood.

My dad and I went up to the hospital tonight to see Ethan. He looked so peaceful and relaxed. I think he may have been having good dreams because he was cooing and having little smiles in his sleep. My dad however got the first real smile since surgery. Ethan had been slowly trying to wake up. He would hear us talking and try to open his eyes but then they would just roll back and close. But one time my dad was talking to him, they made eye contact, and then there it was. The cutest smile. I'd been working hard all day to get it but I'm glad Grandpa Gary got it instead.

We took him his mobile that he really likes that his Grandma Betty and Grandpa Larry had bought him the last time he was in the hospital. I think he will really like having it with him. I also took his ducky blanket home and washed it because it was getting kind of yucky. Plus it smelled like the hospital. He still enjoys listening to the CD's. I think it actually helps him focus and to not be startled with every noise the hospital has to offer.

It is still so hard to leave him and go home, but at least tonight I feel better knowing he is resting comfortably. I hope this is a continuing trend.

I also wanted to just thank everyone (Family, Friends, Neighbors, Ward Members, and even all of you who I haven't met but are praying for us). I can't express to all of you the gratitude that I feel for all of your help (for example: babysitting, rides, meals, prayers, and kind words of support). A simple thank you does not do it justice. I am so blessed to have such a great support system. You are all the reason that I am even coping with this. Please know my love for all of you.



Today when I woke up I was feeling much better than last night. It is just so hard to leave your baby knowing that he is in pain and uncomfortable. I think it also didn't help that I was doing laundry last night and putting away his little clothes. I just want my baby to be home.

This morning when I arrived at the hospital, Ethan looked like he got into a cat fight. I guess around 8:00 this morning, the nurse had left the room to get some morphine for him because he was getting agitated. In the minute or two that she'd left the room, he'd had another melt down and scratched up his eye pretty bad with his arm board. They were worried that he'd scratched his cornea, but they did a test with dye and a special light and it looked ok.

Ethan is still having some blood pressure issues. They started him on a different medication this morning and hopefully this will help bring it down. We'll just have to wait and see. He is also starting to get unhooked from some of his lines. They took out an IV, 3 chest tubes, his urine catheter, the RA line, and the LA lines today. The great news about this is not only is he more comfortable, but today I got to hold him! They also started him on oral feeds last night and said he did really well. So today when he gets hungry again I get to try and breastfeed. I am not sure if he will want to but either way, we are moving in the right direction. They said if all goes well today, we will probably be moved to the surgical floor tomorrow. Overall, today has been a really good day. Thanks again for all of the support.

Tuesday, September 11, 2007

A Quick Update

Tim was able to go and see Ethan after work this evening while I was back at home getting the kids' homework and laundry done. He said that when he first arrived at the hospital, Ethan was calm and relaxed but then had an episode where he became very angry and began thrashing around. Tim said that he immediately went purple. I guess the nurse quickly called in some help because he was pulling on all of his lines and needed to get him calmed down to protect his drains and tubing. He had IV's in each foot which he pulled out and will need to be restarted. They gave him some morphine which helped. When I heard all of this from Tim, I quickly called the nurse to see if he was ok. She said she was in the process of trying to get a hold of the doctor to see if they can start feeding him. He hasn't had anything in his tummy since Monday at 2:30 in the morning and I am sure he would feel better if he wasn't starving. I am not sure if they will let him take a bottle or if they will just place a feeding tube. Also, I had forgotten to mention earlier, but he had a critical low potassium of 2.8 today, so along with all of his multiple other medications he will now be getting potassium riders until this stabilizes. It is such a balancing act to keep everything where it needs to be.

I personally feel like I've hit a wall. I can hardly keep my eyes open and I feel much more emotional and stressed tonight. Up until this point I've been really proud of myself. For the most part, I feel I've kept it together fairly well. I've definitely felt more prepared. But even still, although you know what to expect and have been able to prepare, it is still so difficult to actually go through it. And even though Ethan is doing well, it is so taxing to sit at his bedside and see him in pain. I just think the tears are going to flow tonight and I hopefully will feel better in the morning. It is such a roller coaster ride. Please pray for us.


Day 2

So far today things have been going well. Ethan's temp is down but still fluctuating between high normal and a low grade temp. He is still on the tylenol and antibiotics. He was having a difficult time this morning. He was very aggitated and upset and the medications they were giving him just didn't seem to help. I started playing the CD's that I'd bought for him and have been playing the last couple of weeks. They actually really seemed to help.

They've also been trying to get him off the ventilator for a while now but he's been too sedated. So, they stopped his fentanyl drip to help him wake up. They also pulled his subclavion line. He actually became much calmer when the fentanyl was off and opened his eyes for a few minutes while I talked to him. But the good new is that it did the trick and they were able to extebate him around 2:00. He did so good. His eyes were open and he was very calm. After they took it out I went next to his crib and he just started at me for about 2 minutes. He was also reaching up to try and touch my face. It was so sweet. I know that this is just one moment of one day, but it was so nice to see him recognize me and feel like he was comforted by me being there. He has been sleeping since. Well, I will continue to keep everyone posted. I apologize for all of the small little details, but they are big milestones for me. Thank you all.


Monday, September 10, 2007

It Doesn't Seem Right

It doesn't seem right to come home from the hospital without Ethan. The last time we were in the hospital he'd never been home so we didn't know any different. This time, to come home to an empty crib is definately more unsettling.

I dropped Tim off at home around dinner time and my Dad watched the kids while my Mom and I went back up to the hospital after the evening shift change. It was definately harder seeing him tonight than earlier in the day. He is a lot more swollen and doesn't look like himself. He is also now running a fever (38.9c) which they say is not that uncommon if he is stressed. He is getting tylenol around the clock and will also be started on antibiotics tonight. The hardest part about tonight however was seeing him squirm around in discomfort. When he has the ventilator in there is no sound when he cries but you can tell he is crying. He quivers and draws up his arms and legs, his face turns purple, and his mouth is making the crying motion. It just breaks my heart. It is the hardest thing not being able to comfort him and actually feeling like I am aggitating him because he hears my voice and wants to be held. I know that he is still pretty drugged up (thank goodness) but this is when I get the most stressed and emotional.

They wanted to get him off the ventilator tonight but because he is still requiring more oxygen than they want, they are not going to take him off until the morning. I will be glad to get it out, however it might be even worse to hear him scream. They are starting him on a fentanyl drip for pain and mild sedation and will give him versed as needed if he gets too aggitated.

I can't thank all of you enough for your support and prayers. Again, feel free to share this site with anyone interested.


He's Doing Well

Tim and I were just in the PICU to see Ethan and he is stable at this time. Other than all of the lines, the first thing I noticed was how puffy he is. That is normal and happened last time but I guess I forgot. He is on a ventilator and numerous medications and pumps. He has 3 chest tubes, a urine catheter, subclavion line, arterial line, pacer wires, an RA line, and a pulmonary line. He was receiving a blood transfusion when we saw him. His pressures were a little high but are coming down, and his oxygen sats were low (around 71%), but are coming up and are now in the 78-79% range. Please continue to pray for a speedy recovery. Thanks!


It's Over!

Tim and I are all smiles. Ethan is out of surgery! Dr. Hawkins came in and talked with us about 15 minutes ago. He said that the surgery went as well as could be expected. He also said that although Ethan was on the heart/lung bypass machine for about 2 hours, they did not have to stop his heart this time. He said that there were also no irregular heart rhythms this time. He also commented on how "healthy" Ethan looked, and said that his normal 4 month old Norwood surgeries don't look like that (he didn't want to say that he was chubby). We had to remind him that Ethan was the one that didn't go home on a feeding tube, and he says that he is still the one and only HLHS baby to do that. As much as we are eternally grateful for a good surgeon, we recognize the Lord's hand and all of the prayers that are with us. We expect to be able to see Ethan in about 30 minutes. We'll write more later. Thanks to all of you for your amazing love and support!


We're Here

We just sent Ethan off with the anesthesiologist about 15 minutes ago. We've been up since about 5:30 this morning. We arrived at the hospital at 7:00 to get checked in. They gave him some medication (atropine) while we waited which will speed up his heart during surgery. I guess the medications that they give him in the OR slows down his heart rate and they want to make sure that he is able to get good perfusion to his body. The anesthesiologist said that they will do all of the prep work (IV's, lines, sedation) and then will perform another Echo before they start the surgery. They will then come out and update us when the first incision is made. He said that this will take about an hour and a half. So Tim and I are just waiting.

It was so hard to bring him to the hospital this morning. The last time we did this Ethan was already here and so we were rushing to come and see him. This time however, I wanted to drag my feet. I wanted every last minute with him. Although hungry, Ethan was calm and had fallen asleep in my arms while we were waiting in pre-op. He only fussed a little when we handed him off. That was tough. It is so hard to relinquish all control to someone else. I am sure they will take good care of him. Please keep Ethan in your prayers today. I will update more when I hear.


Sunday, September 9, 2007

Tomorrow is the Day!

Ethan and I just got back from Primary's. We had to go and get all of his pre-op stuff done. Ethan had his blood drawn, gave a urine sample, and had chest x-rays taken. We also met with his surgeon, Dr. Hawkins. He said that Ethan will go in for surgery at bout 8:30 in the morning. He also said that he will be on the heart/lung bypass machine for about 1 1/2 -2 hours and should be out of surgery around 1:30 in the afternoon. We won't be able to see him for about another hour after that so that he can get settled into PICU.

This whole experience is so surreal. Even though you know it is coming, the reality of it doesn't hit you until it is right on top of you. While things are nice and stable and the surgery seems so far away, it is easy to pretend that Ethan is a healthy, normal baby. I think this is the only way I survive. Now that there is nothing left to do in preparation for his surgery, I seem to just dwell on how tomorrow will pan out. I hope I can sleep tonight. Please pray for Ethan and our family. I will update more tomorrow after things settle down.


Saturday, September 8, 2007

Busy Day

Today has been quite the busy day. It started out with Emily's soccer practice followed closely by Spencer's football game. Right after Spencer's game we went home and got all of the kids cleaned up and dressed for pictures. I had thought it would be a great idea to get all of the kids pictures taken not only individually but as a group before Ethan's surgery. In my mind I could envision such a special moment of kids all smiling in coordinating outfits. I thought wrong! That restful weekend of no stress was just thrown out of the window in the middle of Target. Gavin would not sit still. Emily was showing off. Spencer wouldn't hold a pose. And of course, Ethan wouldn't even look in the direction of the camera. Needless to say, there were no pictures of the kids all together and I don't think I'll be ready for a re-do anytime soon.

After Tim and I were good and stressed, we went up to Primary's for the "Hearts of Hope" annual picnic. We were about and hour and a half late because the pictures took so long. In spite of the delay, it was a nice end to a crazy day. It was so fun to see some old friends from our previous hospital stay and to also make some new ones. It was great to talk with some families that know what we've been going through and to get some insight on Ethan's upcoming surgery. While at this picnic there was a story that was passed around that I thought was really touching. I will share it below for everyone to see. Take Care. ---Allison

"I Will Make Your Heart Whole Again"

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels to be born and live on the earth. One of the sweetest angels says to Jesus, "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So, Jesus kneels down and says, "How about if you leave half of your heart here with me and take the other half with you. Will that be okay?". The angel smiles and says, "I guess that will work". But the little angel is still a little scared. He asks, "Will I be okay with only half of my heart?". Jesus replies, "Of course you will. I have other angels there that will help you out, and you will be fine". Then Jesus gives the angel more details about his plan. He says, "When you are born, your Mommy will be scared, so you have to be strong. And when you feel weak, just remember, that I have the other half of your heart. Enjoy your time with your family, play, and laugh everyday. And when it's time to come back to heaven, I will make your heart whole again. Always remember, you are not broken, just torn between two loves."

Authour Unkown

Thursday, September 6, 2007

Getting Ready

We are approaching the weekend and I am trying to get everything as organized as possible. I've been trying to get my house clean (a never ending project), get my laundry done, get groceries and other items well stocked, and confirm arrangements for my other children. The good news is that I was able to get off of my Friday night shift (Thanks guys!) so I can have more time to do these things as well as just have some quiet time with the family. It doesn't seem like much, but I just don't want to have to worry about anything but Ethan and my family during these upcoming days and weeks. It seems to be the little things that eventually drag me down.

Well, there is not much to say at the moment. Sunday morning I have to take Ethan back up to Primary's for pre-op exams, x-rays, and blood work. I am not sure what else we will have to do while we are there but I know that this is when we will receive the time schedule for his surgery on Monday.

Also, I've heard from a couple of people that they are unsure of how to make comments to these posts. If you would like, you can use an existing account, or create one (it's free), or you can just use the "anonymous" button, however, if you use this one just make sure to identify yourself in your message so we know who you are. We would love to hear from all of you. It's one of the best parts of my day to get kind words of support and love. We hope everyone is doing well. As always, thanks for the thoughts and prayers.


Tuesday, September 4, 2007

The Heart Cath is Done

Well, even though they told me it would be 3 hours in the cath lab he was out in 1 hour and 20 minutes. The MD said that everything looked wonderful and his surgical correction was "text book". Ethan is much more groggy and upset after this procedure than the Echo. I am not sure if he is more uncomfortable or if it is due to different medications. Either way, he is either asleep or screaming and arching his back. He is hard to console and still seems kind of out of it. It is hard to watch.

So to make a long story short, it looks like we are good to get the Glenn surgery on Monday. Although I am still anxious about this next surgery, I am so grateful that Ethan is going into as strong and as healthy as he can be. I am hoping to get out of my Friday night shift so we can spend some quality time together as a family and just some quiet time alone with Ethan. Tim tells me I shouldn't think about things like this, but, I can't help but be aware that even though Ethan is strong and many prayers are with us, this is an open heart surgery and things can go wrong. I would just beat myself up if I spent this weekend rushing around and didn't get any time to just sit and slather him with love.

As things get closer, my tension gets higher. Just physically being at Primary's brings back a lot of emotions. I am so scared to do this again. Well, it's been a long day and I am going to bed. I am sure I will check in before his surgery. Please keep us in your prayers.



I am here at Primary's. We got here at 1:00pm to the Same Day Surgery. We signed in and then they went over all of the risks of the procedures and had consents signed, started his IV, checked his weight (15 lbs 1 oz), checked his vitals, and stuff like that. We then went to the pre-op section where we waited for them to come and get us. Ethan was starting to get fussy since he hadn't eaten since 8:30 this morning. He couldn't have breast milk after that time but could have apple juice, water or pedialyte up until 11:30. But because Ethan has his own ideas, he wouldn't take any of them with the bottle. They gave him some oral medication to make him sleepy and took us back into the cath lab around 3:30pm. They did give me a pager so I could walk around the hospital and not be stuck in a waiting room. Tim will hopefully come to keep me company soon. We were told the heart cath would take about 3 hours and then they would keep him at least another 6 hours in recovery. This puts us being sent home around midnight or later and the MD said he may just keep us over night. I guess we'll see when they talk to us again. Well, as always we appreciate all of the interest and prayers that we have been blessed with. I will update more later.


Monday, September 3, 2007

Something Special

I wasn't planning on making an entry until tomorrow after Ethan's heart cath, but I just wanted to share something that I thought was kind of special.

I had worked my normal graveyard shift Saturday night and while I was there I had been informed of some comments that a couple of the NICU staff had made the night we were diagnosed and flown to Primary's. The comments were basically that it wasn't worth it and we shouldn't try to save him and that it was too much to put a baby through. Well, this obviously upset me. I thought, who were these nurses to judge us as parents and who didn't think Ethan deserved a chance at life on this earth. Especially considering the circumstances which even brought him to our family. Well, I had been stewing about this all night, went home and slept, and when I woke up after a few hours of sleep it was still pressing on my mind. Tim and Ethan were playing on the bed and I proceeded to tell Tim about my shift and how upset I was about the comments that were made. Tim had asked me if I had ever noticed anything special about some wooden blocks that I had purchased that said "GIVE THANKS". I had placed these above our fireplace a couple of weeks ago because I really do feel blessed and wanted to remember to always be grateful. Well, needless to say nothing struck me as unusual about these blocks. Tim said that he had been sitting in the living room the night before and saw something that might bring me some comfort. Tim took me into the living room and proceeded to show me that in the middle of the phrase "Give Thanks" is Ethan (givETHANks). ** This to me was just another one of the Lord's tender mercies and confirmation that regardless of what the future holds, Ethan is where he is supposed to be and that our situation is no accident. I know that my family and I are being watched over and that although our situation is a difficult one, God loves us and is there to comfort us if we just open our eyes. Thank you again for all of your thoughts and prayers.


**When Ethan was born, there were a couple of names we were considering and couldn't decide on one. We agreed on "Ethan" at the last minute when it was time for him to be flown to Primary's. It was only afterword that we found out that "Ethan" means "strong" and now also reminds us to "Give Thanks".