The post surgery roller coaster

So much has happened since my last post. I feel as though I've gone through so many ups and downs my head is still spinning.

The morning after my last post CHLA had done additional studies for Ethan's digestive system. They did a lower gGI study and it showed that he has acid reflux. They were still talking about discharging him either Wednesday night or Thursday morning but wanted to perform an upper GI study Wednesday morning. The doctors said that as long as the study didn't have any other abnormalities we would be going home.

On Wednesday Ethan was in good spirits and I was excited about going home. Around 1:00 pm the nurse practitioner came into the room to say that Ethan would not be discharged as he did have some abnormalities but additional testing was necessary. Two more X-rays were completed and a few hours later the attending came in to tell me that not only did Ethan have severe acid reflux but he had a hustle hernia and his intestines were shifted to the right. He said that Ethan would require another surgery.

As you can imagine I was devastated and in shock. The attending also said that he was going to stop all feeds by mouth and restart IV nutrition. At this point Ethan hadn't thrown up in two days and was slowly working up his feeds. It is true that he had lost weight but he was throwing up so much before that weight loss might be expected. I again stood my ground and said that I was going to continue breast feeding. This didn't make the attending happy.

The next question was then where was Ethan going to have his surgery? Because it would be a general surgery it could be done at Kaiser and we had a choice of going across the street in Los Angeles or going down to San Diego. Since Ethan's first surgery, his esophagus repair was done at Kaiser in San Diego I asked if the same surgeon, Dr. Vasquez, would be the person performing the operation since he had exceeded our expectations the first time around. They said he would!

Wednesday night Mike came up to be with Ethan and I. Thursday morning we took Ethan for a walk in cvacute. We sat down the hall on a bench under a window. Ethan was in his stroller and as I looked at him I noticed that he had a rash on his leg (the good one) the other was bandaged up so I couldn't see if it also had a rash or not. We went back to Ethan's room and called for a doctor. They took off Ethan's leg wrap and the rash was also on his right leg, on his stomach, arms and back. They only change was that they had started him back on TPN and the lipids! Well obviously Ethan has an allergy to lipids. They immediately discontinued them and gave him Benadryl which eventually made the rash go down. Ugh! Wouldn't they have figured he was allergic after seeing the reaction in his foot and leg?!

At about 2:15pm the transport team arrived and by 3:30 Ethan and I were headed down to Zion. The ride in the ambulance was super uncomfortable for me and I ended up getting a little car sick.  Ethan did fine in the beggining but then cried for about 45 minutes once we got stuck in traffic.  We arrived in San Diego at about 7:30 pm. 

Early the next morning both Ethan's surgeon and the cardiologist came to visit.  The surgeon stated that typically he did not operate on hiatel hernia's alone. He may operate on the reflux but only if it was so bad that after each feed Ethan was vomiting and had lost a significant amount of weight and then while he was in their would repair the hernia.  Fortunately for us this was not the case, Ethan was holding down all of his breast milk and some food. He said that he was comfortable sending us home with weekly weight check appointments.  Our cardiologist was more than pleased with Ethan's heart function and couldn't even hear the small VSD that the doctors at CHLA heard. 

Best news came at about 11:30 am- We would be discharged to go home! We finally got to go home Friday September 14th!

Last week was a blur.  I think we had about 3 doctors appointments and I've been trying to schedule physical therapy.   Ethan is doing so much better and is thrilled to have been reunited with his brothers and sister.  He is eating up a storm and I am looking forward to his weight check tomorrow.  Last week he was at 16lbs 7 oz and I'm hopeful he is back to his pre-op weight of 17lbs.

Now the big project is to gain weight, continue with appointments and plan a BIG Birthday party for October 13th!

Change of perspective

This last week has been extremely difficult for me emotionally. I'm not gonna lie, it's probably been one of the most difficult times in my life. I have been frustrated, angry, irritable and just plain mean. I actually feel very sorry for a few nurses that have had to deal with me.

Last Wednesday we had a biopsy done of Ethan's leg. Still no answers. He still is having trouble eating solid foods. We had been told that he would be discharged last Monday but that was changed on Sunday. We are hopeful that he will finally get to come home either tomorrow or Thursday. We found out today that Ethan has very bad acid reflux which explains the vomiting. They have him on medication for the reflux and he was able to hold down some food today. He will have another test tomorrow morning to check his esophagus to make sure that nothing was damaged with all the tubes they've put through it. If everything looks good we may be released in the evening.

I digress, so as I mentioned I've been pretty much a miserable person the last week and I've been getting extremely impatient about going home. Last night I came back to the Ronald McDonald House and saw Sylvia (one of the employees here) put out a rose and a paper that read that one of the families staying here lost their child. Then on Facebook another HLHS baby had also passed away. I can only imagine the pain that these families are going through. Its strange to me that a year ago death only happened to the elderly and now suddenly its all around me and part of my reality. I no longer feel invincible and have anxiety about death and losing my loved ones.

These events, however, gave me a new perspective on how I should be grateful that going home is even a consideration. Today I kept that on my mind all day and I had a much better day. I made a conscience effort to be grateful, to say thank you and to just be nice. Ethan and I chatted it up with the nurses, parents and other patients today. It was good for my soul.

So until Ethan gets discharged I will choose to have a positive attitude and be grateful for what I do have. I will be the person that I would want to be around and know and not the crazy mean person I had become the past week.

Hopefully the next post will be the news that we are home. Till then I thank you again for your prayers and continued support.

The waiting game

You've probably heard the saying "no news is good news" right? I'm not sure if that's true or not (time will tell in Ethan's case) but right now no news is frustrating both Mike and I.

Ethan's foot is still swollen. The swelling in his foot has come down from 15cm to 14.25cm and we are grateful for that. With that being said the swelling has spread into his knee and upper thigh.

We are beyond frustrated. I'm not the type to be easily angered or to yell at anyone. I'm usually a pretty patient person. In the last three days I've lost my patience with two nurses, one fellow, a social worker and a doctor. At this point I'm pretty much convinced that everyone here thinks I'm crazy. Perhaps they're correct. When it comes to the health of my children I think I know what's best and I'm entitled to have a say in their care. Because Ethan had been throwing up so much they wanted to stop feeding him by his mouth and only by an ng tube (tube that goes through his nose directly into his stomach). One of the doctors felt that he was throwing up so much because he had been aspirating his feeds into his lungs and then throwing it all up. I knew this couldn't be the case because he would eat just fine then sometimes hours later begin to cough and throw up. When the nurse told me last Thursday that I couldn't feed him by mouth till he had a swallow study done I was livid. To make a long story short I basically had to tell five different people that I was going to breast feed and that was that. I am his mother and I know what's best.
Guess what?! Who was right (yet again)? Me. He hasn't thrown up for me since last Friday which even on Friday it was only once. The doctors are still standing by their story that they want a swallow study done, which probably won't happen till tomorrow (6 days after it was originally ordered). They have conceded to pull out the nose tube today and they let me feed him solids. Win for Ethan!

Now back to the foot/leg. Ethan literally has a range of doctors in to see him every day. He has had auto immune doctors, infectious disease, renal, orthopedic, dermatologist, plastic surgeon, and general physicians look at him. At first the diagnosis was cellulitis but after seven days of antibiotics their was no improvement. Then it was thought compartment syndrome but blood flow was still good. Then just inflammation with no infection. Then paraffinoma, then perhaps lymphedema, then.... I don't know. There has been no real diagnosis and now the course of action is merely to sit, wait and observe.

Today is day 27 post op. I have lost my patience. I miss my "normal" life and want nothing more than to take a healthy baby home. I am hopeful that this sit and wait game doesn't last too much longer.

It's so frustrating that after Ethan is able to recover from such a massive surgery that an infection from an iv due to negligence is what's keeping him here.

Please pray for patience for Mike and I, healing for Ethan, and clarity for the doctors.

XOXO,
Renee

Good news, bad news

When I was a little girl and someone would say, 'I have good news and I have bad news, which would you like first?' I would say good news. I think at the time I liked the instant gratification of the more pleasurable news. As I got older things changed and when I got into my late teenage years I wanted the bad news first. It's kind of like pulling off a bandaid fast. It hurts for a moment then the pain quickly goes away. You also hear the good news after and you can end on a good note. That being said, bad news first...

For those of you that don't yet know Ethan had an IV in his right ankle that was placed prior to surgery. At 14 days post op his nurse saw that it had infiltrated and his leg and foot was swollen. The IV had been transfusing lipids and when she pulled out the iv some lipids had come out of the site. This was last Tuesday. His leg was swollen throughout the rest of the week but seemed to be going down in his leg. On Friday his foot was swollen and red. We had been transferred out of the critical care unit and into the step down unit which meant that home was around the corner. Unfortunately his foot got worse and nurses, doctors and surgeons were inspecting it quite frequently. His heart surgeon Dr Kallin came into take a peak and he was furious. He had Ethan immediately taken back to CTICU so he foot and leg could be more closely monitored and so Ethan could have one on one care.
Today the foot is still red, shiny and swollen. Ethan is in pain and very uncomfortable. They have him on two different antibiotics to help clear the infection and he has a fever. They believe he has cellulitis which is very painful and can last one to two weeks. They are concerned about the swelling turning into compartment syndrome which would require an additional operation.

Aside from this, Ethan is not doing well with his feeding. He still has some fluid in his lungs and when he coughs up the mucus he swallows it and then throws up all of his food. The doctors are monitoring this very closely and are talking about sending him down to radiology to see if he has digestive issues or just reflux. We have never had feeding issues with Ethan before so this is very frustrating. Especially since he is hungry and has a strong desire to feed.

The good news:

Another echocardiogram was done and Ethan's left ventricle has grown and is of adequate size to function. His heart is functioning well and from a cardiac standpoint he would be able to go home.

Even though his foot is swollen and infected his foot still has good oxygen saturation levels and a pulse. (This means that oxygenated blood is still making it's way down there.

That's all I really have for now. Please continue to keep our little one in your prayers.

The Road to Recovery

Sorry no update for a while. As they say, 'no news is good news', right? Ethan is holding his own. Recovery has been slower than the doctors (or I) would like but Ethan is making baby steps every day. They determined that the fluid in his lungs was due to pneumonia, which crazy as it sounds was a best case scenario. He has been on antibiotics for the past seven days and it has helped although he does still have fluid and he is coughing quite a bit.

Saturday was the best day. Ethan was extubated and I was finally able to hold him after ten long days. On Sunday he was able to eat by mouth for the first time. I had gone back to Oceanside to visit Braden and Cameron for a quick 24 hours, but Mike was with Ethan for his feeding. Unfortunately Ethan threw up all of his food. I came back Monday at 1:00 and was able to feed Ethan pears and breast milk and he kept almost all of it down. We weren't so lucky with his next feeding of squash and he threw up pretty much everything. Yesterday he threw up his peaches and refused to breast feed but took breast milk from a bottle.

Why do I go into such detail about his feeding? If he isn't able to keep down his food and eat at least 3 ounces every 3 hours then they will not discharge us. Often times with heart babies this can be a struggle. I'm hoping that it's just due to his gut not having to work for eleven days and that everything will kick in as it should soon. We have been fortunate to not have any feeding issues in the past with Ethan and I'm hopeful that as discharge comes near that will be the case.

Ethan is still in CTICU but they have completely taken him off his milrinone today. If his blood pressure is stable for the next 24 hours then he'll be transferred to the floor. (one step closer to home!) He is slowly being weaned off of his pain medications and is not suffering to badly from withdrawals. He is currently receiving a blood transfusion as his white cell counts were down and they don't want his heart working to hard to produce them. So the transfusion should assist in giving him a little kick start.

The doctor thinks that if he continues recovering at the pace he is at now that he may be able to go home by Wednesday of next week. I'm okay with that but would really like to get home by Sunday so I can be back home with the family.

Please continue to keep our little man in your prayers.

Much love and thanks,

Renee

A thankful heart

Today I am grateful. I am grateful that despite the odds (even from before Ethan was born) that my baby is still alive today. I am grateful that with each day his health improves.

I am grateful to my fiancé, Mike, for being my rock, my love and my greatest supporter.

I am so thankful to my mom who has so graciously been taking care of Braden and Cameron so I can be here with Ethan. I am thankful for Nancy Schowen for helping and being so accommodating as well. I am also grateful to my brother Eric for stepping up to the plate and helping as needed. I am thankful to My brother Mike and his wife Kim for braving a few days and nights with Cameron. (Pretty good birth control, huh?)

I am incredibly thankful to my Dad who has come every day to the hospital to visit, give support and have dinner with me. I'm grateful to Angeles who has also made the trip a couple times and has kept the prayer chain at her church advised of Ethan's condition.

I'm thankful to the friends that have offered to bring my mom and the boys dinner (Kate, Lauren and Carolyn). I can't tell you how much that means to me.

I'm grateful to my Facebook friends that have commented words of encouragement, prayers, life experiences, or shared Ethan's story with others so they can pray- it really means so much to me and helps me to get through the day. (In particular Debbie Mulligan, Lindsey Allen, Kate Hammernik, Aubree Valentino, Jessica Jacobus... The list could go on forever but just to name a few)

I'm thankful for the texts and messages from others. (Elisha, Emily and Vanessa)

So grateful for the kind words of other heart moms joined through Sisters by Heart.

I am grateful that Ethan was more awake today and that when he looked at me like he knew who I was. I'm grateful that he held both of my hands and fell asleep staring at me. I'm thankful that he tried to talk through the ventilator and that I heard a silent 'mama' and nearly cried.

Most importantly I thank God for the blessings he has given me.

I'm so thankful for so much else and to so many others so please forgive me if you were not mentioned. I just felt the need to say thank you today. Love you all!

A Bump in the Road

Yesterday was a good day, a wonderful day, considering the circumstances. Ethan was slowly being weened from support, his swelling had gone down significantly, saturations were in the high 90's, and they were talking about extubating in the morning. We had friends, Jevon and Michelle, drive up to visit and take us for lunch and then my dad met us at the RMDH for dinner. As I said it was a good day and things were looking up.

Today was not a good day. Early in the morning Ethan's blood pressure rose and his saturations went into the low 80's. They had to increase his breathing settings from 16 bpm to 50 bpm. They had to do suctioning on his breathing tube more frequently than before (they were getting more secretions). They did an X-ray and saw fluid on the lungs. The on-call Dr referred to them as "wet lungs", my advice- don't google. This was not the news I wanted to hear when I went to visit today. I was hoping for an extubated baby that I'd be able to hold and play with again.

Mike had left last night to go back to work today so I was alone when they told me what was happening. When I called Mike to break the news to him he only had more questions. Questions that I didn't want to ask. Someone once told me not to ask questions that I didn't really want answers to. Like "how serious is this?" or "will my child die?"

Those were the questions I had to ask today.

The answers? 'It is very serious especially in Ethan's critical state, but not as serious as the rhythm and function issues he was having two to three days before. We have to find the cause or underlying issue of the fluid on the lungs to know how to treat it. For now we will call it a bump in the road.'

The doctor thinks it could be a few things. As I mentioned in my last post the echo showed that Ethan's heart function is as it should be. What the echo does not show is the relaxing function of the heart. They see that it is squeezing properly but would not know without a cardiac catheterization what the resting pressure is like.

Or

It could be that the scimitar that was corrected has already built up scar tissue and the blood from the lungs is backing up.

Or

It could be an infection that antibiotics could cure.

Or

It could be that being on bypass so long has affected his organs and perhaps thyroid therapy could help.

I am praying that this will just pass on its own and that no more surgical intervention is required. Please pray with me. Please also understand if I don't return calls right away. It's hard to relive it over and over again with everyone by phone. (reason for the blog)

Heart hugs to all!

Turn around the corner

It has been 50 hours since Ethan came out of surgery.  When the doctor's say the next 48 hours are going to be the hardest and most crucial they aren't kidding around.

After surgery Ethan began to have a fever and arrhythmia.  His heart function was not where it needed to be, the nurses were barely getting a pulse in his lower extremities, and his fever was between 102.1-103.3.  The pacemaker that was placed was constantly kicking in and I think I was a nervous wreck.  We've had so many people praying for us and I truly believe that has made such a difference.  I had posted a prayer request on facebook and a few hours later his fever broke and was completely normal.  It has been at 98.6 since 12:00 am this morning!

Last night the doctor's had to turn the pacemaker on to pace Ethan's heart.  His heart rate had drastically increased to 180-230 beats per minute!  This really freaked me out especially when I googled tachycardia on the Internet.  Fortunately, I have friends that are heart moms as well (connected through Sisters by Heart) and they calmed me and told me that this was normal post op. They gave him some medicine to also help with this and they are still pacing his  with the pace maker heart now.

More good news is that I just met with the cardiologist here and he had ordered an echo cardiogram and told me that the function of Ethan's heart looked perfect on the echo!  He said that Ethan is stable now and he feels that he has finally starting to "turn around the corner".  They are now giving him lipids and nutrients through the IV and starting to slowly turn down some of his medicines.  I am hopeful that within the next few days they will be able to extubate him and I'll be able to hold my little love again.  For now I just talk to him and watch him sleep.

On the funnier side, yesterday a nurse commented on how smart Ethan was.  I said, "Really?  What did he do?" She said that he had been stirring in his sleep and went straight for his breathing tube and tried to pull it out.  Needless to say they have his arms tied down now.  I told her that I don't blame him for trying to pull it out- he has a few things on his mind he'd like to tell us!

Well, good bye for now.  I will keep everyone updated as we learn more!

Surgery

Yesterday was our pre-op visit at Children's Los Angeles. We checked in at 10:00 am and Ethan had a complete physical and blood draw. He was quite the trooper considering we were there for almost four hours! The phlebotomist at CHLA was fantastic and was able to get his vein on the first try! This is unheard of for us. Ethan is usually a very difficult draw and it is a very traumatic event both for him and us (Mike and I) when he has labs done. We also met with our surgeon, Dr. Kallin, to sign consent forms and further discuss the operation for the following day.

Dr. Kallin indicated that he was 90% sure it was going to go the Glenn (single ventricle) route. I told him that I liked the numbers he gave me when we had our phone conversation two weeks prior (75% Glenn 25% full heart repair). I told him that we'd been feeding Ethan blue berries and praying and I was sure his valve would measure at 9mm like he wanted to see. He looked at me like I was crazy and again reminded me that he had shown Ethan's echo to the finest cardiologists in L.A. And they are seeing the valve at 6.5 mm but that he would place a dialator in the valve and if measured at 9 he would do the whole heart repair.

We met with my dad for dinner and a walk after in Glendale and I told my Dad that it looked like it would be going the single ventricle route although I wasn't giving up hope I had come to terms with the surgeons decision. My dad asked what the valve needed to be at for the full heart repair. I told him nine and he said okay that's what we will pray for then.

Today we checked in for surgery at 6:00am. They gave Ethan some "happy juice" and he was so adorable when it kicked in. He was staring at me and smiling with those big brown eyes of his that I have fallen in love with. They took him back for surgery at 7:00 am and the waiting game began.

At about 2:30 a nurse came in and said they were warming him up and surgery was over. She said Ethan was getting his Glenn today, right? I said ," I think so." She indicated that Dr Kallin should be out shortly to speak with us. All of the sudden time began to stand still it seemed like we were waiting forever and then nothing.

At about 3:30 Mike went to talk to the nurse again. She said that they had to go back in and do additional repairs to Ethan's arch and didn't know how much longer it would be. At 4:00 Dr. Kallin came into the waiting room. He looked at me and told me that I got my wish and Ethan got a full heart repair!!

He said that the valve measured at exactly nine mm and he felt confident in doing the full repair! He even corrected Ethan's scimitar which he wasn't even going to attempt till Ethan was two or three!! He said that the surgery did have a few issues, which is why it took so long, and that Ethan was on bypass a little longer than he likes but that he fixed everything!! More specifically a very hard to get to and large ventricle septal defect (VSD), coarctation of the aorta, scimitar, pulmonary band removal and reconstruction and removal of the shunt in his PDA. (Well actually half of the shunt is still in there. It had scare tissue grown around it and eventually it will need to be corrected but it should be fixed through a Cath lab and not another open heart surgery.) I am still shocked and amazed!

We were able to see Ethan at 6:00. His coloring was good and his blood gases were better than expected. Unfortunately he has a temperature of 102 and some arrhythmia. They have placed a pacemaker and it has kicked in a few times already. Please continue to pray for a speedy recovery. The next 48 hours are so crucial. Your prayers mean so much to us and they are working!!!

Family Matters

This last week was spent surrounded by family. Mike's parents took the train down from Sun River, Oregon and stayed with us Sunday night through Thursday morning. I can not express how grateful I am to them for making the long trip down and for being so helpful with Ethan. On Monday they watched Ethan while Mike and I took the boys to a movie. On Tuesday we all packed into the car and went down to Coronado for the day, it the first time I had been there and I instantly fell in love. I had such a blast walking around town and the grounds of the hotel del- I wish we could've stayed longer!

Wednesday we drove to Temecula to meet with Mike's cousin, Cheryl, her husband, Kylle, and daughter, Leah. We had lunch at South Coast Winer. It was delicious! Ethan was overly exhausted and cried the whole way home. I don't think I've ever seen him so upset in the car since I first brought him home.

Mike's parents left Thursday and I mostly just did laundry, hung around the house, then took a long walk with the boys to a nearby park and took pictures of my little loves.

Friday I knocked two more items off of Ethan's "activity" list. Chuck e Cheeses and Cotton Candy. Now don't judge me. I realize that I shouldn't be taking a medically fragile baby that is about to have open heart surgery to a germ infested place swarming with children. In my defense, I feel like everyone should go to Chuck e Cheese's at least once in their lifetime. I held him the whole time accept for one ride which I thoroughly wiped down. As for the Cotton Candy I'm not a fan of giving any child sugar, especially one that's nearly ten months old, but it was a very small taste and this surgery is really getting to me. Friday night we had dinner with my friend Carolyn and her family.

On Saturday my brother Mike came down for dinner with his family. I can not tell you how much I appreciate not only the distraction of having family and close friends visit with us, but the importance to me of having them get to know Ethan and say prayers for him.

Today was a calmer day. Just Mike, Cameron, Ethan and I. Ethan and I played together on the floor for at least an hour. We is starting to pull himself up on objects and get on all fours. I was hoping he would crawl before his surgery but now feel perhaps it is a blessing in disguise that he hasn't yet. After all he will be stuck in a hospital bed recovering after surgery and it's probably best that he focus on that rather than wanting to get on the ground and crawl around.

Mike, Ethan and I leave tomorrow night for Los Angeles. Pre-op is set for early Tuesday morning and surgery for Wednesday. Please continue to pray for Ethan and for the best possible surgical outcome for him.

Much love and appreciation- Renee

The Fig Tree

Around the time Ethan was born my mom had brought home a small branch from a white fig tree. It was maybe twelve inches long and had only one leaf on it. She had done an exam on someone that had various fruit trees and he had given her some of the fruits from them. The white figs she brought home were spectacular, unlike any other fig I had ever tried. They were lightly sweet and almost aromatic in flavor.

When I saw the small branch I kind of laughed to myself. Surely this minuscule branch would die within weeks. Well, the branch didn't die and quite to my surprise it actually began to grow. About a month ago what was a twig in a pot with one leaf grew more leaves and another branch. Before I knew it a baby fig had grown on one of the branches!

What was once a twig (that I thought for sure would perish) had over the course of time not only grown but was able to produce fruit. As I sat on the patio this morning and stared at the tree I could not help but think of Ethan.

When Ethan was diagnosed in utero I was told he would have no quality of life and that the future for him would end up pretty grim. I now have a bright eyed, brilliant miracle baby that has surpassed all expectations thus far. Just like the tree that was planted around the time he was born.

I am hopeful that with continued love and care that not only will his heart have continued growth but that he will be "fruitful" and flourish and grow to be a strong young man.

Moving Forward

After a lot of discussion, going back and forth, and weighing out all of the pros and cons. (Not to mention asking God for guidance and clarity) We have decided to go forward with the operation in Los Angeles.We understand that going into the surgery it could go either way and at this point I am trying to accept the fact that I don't have any control- only God and Dr. Kallen (the surgeon) do.

We have said many prayers for our son and will continue to do so. I am hoping that the valve in question met will be at least 8mm in size so that they are able to do a complete heart repair for Ethan, but am anticipating that Ethan will have the single ventricle repair. The surgeon said he was 75% sure that it would go the single ventricle route and didn't want us to get our hopes up for the full heart repair. Ethan's surgery is scheduled for August 8th.Pre-op appointment will be the day before at Children's Los Angeles at 10:00 am and will last 2-3 hours.

We decided to stay with Children's Los Angeles for many reasons.

1.) Of course their is the convenience factor in that we will only be about 2 1/2 hours from where we live, but most importantly we feel that the surgeon was very candid in speaking with us and believe that he will do what is best for Ethan overall.

2.)We had tried contacting Boston on multiple occasions and neither the surgeon or the cardiologist would return our calls. The cardiologist there spoke to Ethan's cardiologist in San Diego and said that they would be able to do the full heart repair, but he wouldn't return any of our calls.(We left messages both with receptionists and on machines.)

3.) Insurance would not cover the surgery in Boston, so of course that was another factor.

4.) My dad and step mother live very close (about 20 minutes) from the hospital so we would have the emotional support of having family close by.

I feel that after weighing out all the pros and cons that God was guiding us in the direction of Los Angeles.

I am not going to lie and say that I'm not a wreck or having anxiety. I will probably always question if I'm making the right decisions for Ethan, but I think that I would feel that way no matter what decision was made. I try to be strong for my family, but the unknown of what to expect and the fact that my baby will be undergoing another open heart surgery truly scares me. It's difficult to hand over your child to someone that has his life in his hands. We are counting down the days....10 from today till surgery....

Please pray with us in asking for continued growth of Ethan's valve and for God's guidance over the surgeon's judgement. We truly appreciate the prayers and support of our friends and family.

Fork in the Road

Since Ethan was born our cardiologist(s) has gone back and forth on whether Ethan will need to have the single ventricle repair (which HLHS babies generally have) or have a full heart repair. Ethan's left ventricle is borderline in size but he has other heart defects as well. (SCIMTAR Syndrome, VSD, Coarctation of the Aorta). It seems like every time we are given hope for a full heart repair the doctors decide that it would be better to proceed with the single ventricle repair (Norwood/Glenn hybrid operation now and Fontan when Ethan is 2-3). Right when we accept the fact that he will have a single ventricle heart we are once again given hope.

When Ethan had his cardiac cathertization in May the cardiologists in Los Angeles told us that he would need to have the single ventricle repair. They said that although a full repair was possible their would be higher risk of brain damage and future operations down the road in addition to the unknown function of his mitral valve. We were again saddened as our hopes were high that he would be able to have a fully functioning heart. We understood that the single ventricle repair would be best for Ethan and had come to terms with the decision made by the doctor's in L.A.

Prior to hearing the news from L.A. we had our cardiologist in San Diego forward Ethan's images, test results, echo, cath, etc to Children Boston's. For those of you that are unfamiliar, Children's Boston is the #1 hospital in the country in regards to pediatric cardiology (don't get me wrong L.A. is #11 which is still very high) and they are literally cutting edge when it comes to HLHS babies. They are even doing in utero procedures to balloon the left side of the heart! Anyways, we heard from the cardiologist/surgeon there, Dr. Wayne Torestky and Dr. Pedro Del Nido, and they believe that the best long term option for Ethan was to do the whole heart repair!

Again we were given hope but had so many questions. Why didn't L.A. feel the same way? Would insurance pay for his operation away if we decided on Boston? What would his quality of life be?

First call I made was to our insurance company. We have a high deductible plan through Kaiser and they indicated that they would not pay for Ethan's surgery in Boston and the only time they would pay for a hospital that is not contracted through them would be in an emergency circumstance.

We then met with the surgeon in L.A. July 13th. He indicated that he felt that Children's Boston was giving us false hope and not disclosing what the full heart repair would entail and the risks associated with it. He feels that depending on the size of Ethan's ascending aorta that he may not even be a candidate for the operation and that we would make a trip out there for nothing. He told us that he would order an echo cardiogram and if the measurements were 8mm or more (should be 8.5-9mm) then he would attempt to do the full heart repair but it would also be dependent on how things look when he goes in. He let us know that either way there would be more surgeries down the road and that he was more in favor of the single ventricle repair as it would be more "predictable". We had the echo cardiogram last Monday, the 16th, and Ethan's cardiologist was extremely optimistic he said that he was getting a measurement of about 7.5-8mm and he felt the whole heart repair would be the best option.

On Thursday I finally heard again from the surgeon in L.A. He felt that our cardiologist was overly optimistic and that he was getting measurements between 6-7mm. He said that he didn't want to give us hope and that he was 75% sure that he would be performing the Norwood/Glenn hybrid procedure, but he wouldn't know for sure until he opens Ethan's up and measures the pressures and sees the anatomy of his heart.

Either way we are at a fork in the road and there is no going back. Do we continue to pursue Boston even though it would not be covered by insurance and put us in the poor house? What if we do and it is all in vain and Ethan has the single ventricle repair anyway? Do we trust that the surgeon in L.A. will make every attempt to do the whole heart repair? Many people have asked why they don't just try the whole heart repair and if it doesn't work as expected then do the single ventricle repair. I have asked the doctor's this very question and they have told us that once they pick one road there is no going back at this point. We are truly faced with the most difficult decision of our lives, of Ethan's life. Prayers for Ethan, for the surgeon, and for us are greatly appreciated along with support, advice and a friendly comment.

Facebook posts after Open Heart Surgery

11/4/2011

Ethan is recovering extremely well from his heart surgery. His color is back, he has been extubated, and his chest tube and catheter have been removed. He will be on CPAP for a few days as a precaution for his right lung, but hopefully I'll get to hold him again later this weekend or Monday. His eyes are full of life and for now he is happy being able to hold my hand. :)

11/5/2011

Ethan got his snorkel gear off today...aka CPAP. He is very happy! Four days after open heart surgery. He is up to 2 ounces of milk through his NG tube. He will have a swallow test Monday and start bottle feeding! Praise God for his speedy recovery!

11/8/2011
I can't believe that a week ago today Ethan had his open heart surgery. He is officially off all IV's, and any type of breathing assistance. He looks fantastic and is quite the flirt with all the nurses. Next step is to work on his bottle feeds and he can come home. The occupational therapist will meet with him tomorrow for his first bottle feed and she will develop a plan for him. I'm seeing the light at the end of the tunnel. Thanks again for the prayers, support and messages- they mean so much to Mike and I.

11/13/2011
Looks like we MAY be taking home baby Ethan tomorrow! Yay! Ok, so what do I need for a baby at home??? I'm making a walmart run tonight for diapers, wipes and Tylenol. What am I forgetting that I will need?? Help!

11/14/2011
Looks like baby E won't be coming home till tomorrow:( at least I'll get in another full night if sleep and maybe another run to the store right?? #tryingtobepositiveandnotsad

11/15/2011
Looks like Ethan will not be coming home tonight. ;( he didn't take his full feeding this morning (36 out of 60 mls) and didn't gain any weight from yesterday. They want to monitor him to make sure it's not a trend. :( Its been a long five weeks and I'm ready to take my baby home....

11/17/2011
On our way home!!

12/07/2011
Ethan update- We saw the cardiologist again yesterday. Ethan is doing so well that we won't need to go back for a month!! We're still not sure what the next operation will be as his heart is borderline for hlhs. We are praying that the left ventricle is large enough to be useful but the doctors are divided. We are hopeful that the next surgery will just be to close his VSD and fix the coarctation of the aorta. Please pray for this for us. The cardiologists in Los Angeles are reviewing his case now and we hope to hear from them sometime in the coming week about what operation he will need and the timing of it all. We will keep everyone posted as we learn more.

1/1/2012 12:22am
Got home from taking Ethan from urgent care just in time to say happy new year to the rest of the kids and guess where I'll be going tomorrow at 9:00am??? That's right- a follow up appointment for Ethan at urgent care. Happy New Year to all!
Tomorrow is my first day back to work since Ethan's arrival. Wish me luck on getting through the day without having a breakdown. :)

2/14/2012
Headed to the hospital with little Ethan. He got sick over the weekend and it's progressively gotten worse. Took him to urgent care yesterday and they did X-rays and put him on antibiotics. Mike called his cardiologist to have him also review the X-rays. He called this morning and wants Ethan to have antibiotics through an iv for a day or two. Happy heart day to us.

2/15/2012
Hospital stay for one night- $2,000 (out of pocket, WITH insurance)
Having my baby home again- $priceless$
Thanks again for the kind words and prayers!!

3/5/2012
Took Ethan to the cardiologist today and got good news. Don't want to say to much now as we need to get the results from his cardiac catheterization, but things are looking up!

3/28/2012
Ethan had a terrible night last night. He was up coughing and throwing up pretty much all night. When we got up this morning he threw up and looked blue. Mike took him to the doctor this morning and the doctor gave him a nebulizer and put him on oxygen. Oxygen saturation levels are lower than they should be. The emergency transport team from Rady's came to our doctors office and we are in route to San Diego for an overnight stay. Ethan's procedure in L.A. for tomorrow has been canceled (again). Please keep our little one in your prayers.
Update- 5:27 pm
Baby E is finally asleep and his coloring is looking better. Thank you all for your kind words and prayers.

4/10/2012

My miracle baby Ethan Matthew Poochie Cheeks Juarez is a half year old today! How time flies when your having fun (or visiting doctors and hospitals in our case!) Love my little man!

5/2/2012
Driving up to L.A. for Poochie's cardiac catheterization which is scheduled for tomorrow at 9:00am. He is finally well enough to go through the procedure! They say timing is everything and I think baby E knew that he wanted his procedure to end up on the international day of prayer. It suits me just fine, please keep mr Ethan Matthew Poochie Cheeks Juarez in your prayers tomorrow. (since you'll be praying anyhow...)

5/4/2012
Sorry no update for a while. I'm still processing everything from yesterday. Everything went okay with the cath a little excess bleeding in recovery but a smooth procedure overall. Results were not quite what we wanted but I have faith that the cardiology team in L.A. will come up with a good plan for Ethan. The team will meet on the 18th to discuss Ethan's case. Ethan is feeling better and his appetite is finally coming back. Thank you all for the prayers, kind words and support!

5/25/2012
Ethan's finally getting use to his nebulizer!

5/30/2012
Ethan has been sweating more and more lately, especially when feeding. Weird thing is its only on the left side of his head. I realize that it is time for his next surgery, did any other heart mama's out there notice this with your babies??

7/4/2012
Happy 4th of July all! Daddy let me celebrate my independence by letting me go in a swimming pool for the first time!! I loved it!! (from Ethan Matthew aka Pooch)

Facebook Posts

During Ethan's hospital stay it was difficult to find the time and the strength to sign on to a computer to update the care pages blog so I began posting updates on facebook.  Below I will simply copy and paste the facebook updates and pictures.  I will not re-edit based on information we know now.

10/15/2011

Thank you to everyone that has messaged me asking about Ethan. I figured it would be easier to do a post rather than respond to each individual message and hope you all understand and don't think I'm ignoring you.
Ethan is doing extremely well considering he had a major surgery on Tuesday. He has developed a little rash on his chest but the nurses assured us they are monitoring it. When we went to visit yesterday he was moving his fingers and toes, trying to open his eyes and starting to breath on his own through the machine. The nurses said that they had noticed that and spoke to the surgeon. It seems that he had built up a tolerance to the paralytic and they either needed to increase the dosage or with the surgeons approval remove it all together. The surgeon decided to take him off of it since he seems to be doing so well. (YAY!) He will still be sedated but should be weening him off of that either today or tomorrow.
The surgeon said that he had planned on doing the dye study on Tuesday to make sure that the surgery took well and their is no leakage in Ethan's esophagus. This study might be moved up to Monday depending on how well Ethan is doing. After the dye study we will begin to discuss how to begin Ethan's feedings. I know initially it won't be by bottle but I'm interested to see if they will go through his nose or mouth. It all depends on when they feel that he is ready for extubation. They don't want to take him off too early as the surgeon doesn't want to have to put him back on and mess up his handy work if they miss the trachea.
That's all I really have for now. Again thank you all for your concern and prayers. I can't tell you how much it means to my family and I.

 

10/17/2011

Ethan was extubated today!! It looks like his heart surgery will be sometime next week.

 

10/18/2011
Ethan started off the day doing extremely well. He had his dye study for the esophagus surgery at 11:00 and there were no leaks! Dr said we could begin feeding him by bottle around 4 or 5. Unfortunately that never happened because his blood pressure and sat's started to decrease rapidly, he began to have difficulty breathing and he turned pale. Long story short he had to be reintubated. Cardiologist is on the way now to do an echocardiogram. They have put him back on the prostaglandin to try to re-open the ductus. Looks like he might need his heart surgery sooner than we thought. Prayers needed!!

10/18/2011
Well it appears that Ethan's heart is functioning well and that he has somehow gotten an infection the doctors don't know how or what kind of infection so they have put him on three different antibiotics. He is stable now but the next twelve hours are critical. Once he has been stable for a while they want to transfer him to rady's childrens hospital. Hopefully tomorrow or the next day.

10/20/2011
Ethan was transported to Rady's Childrens hospital. They are in the process of checking him in now. His stomach is still swollen and ascended and heart function has decreased. We are happy to be at children's and hope that Ethan will improve here. The past couple days have been really tough and we are ready for the tides to change.

10/23/2011
Ethan was placed in another medicated coma when we got to children's on Thursday. They started weening him off the paralytic yesterday and is stating to wake up again today. His organ function is returning, but he still needs to be on the ventilator. Not sure when he will have his heart surgery he needs to recover more from his infection.

10/28/2011

Guess who got extubated today?! Finally got to hold baby Ethan after 2 1/2 long weeks. Heart surgery looks like it will be happening Wednesday of next week.

10/31/2011
Ethan had to be reintubated this morning because his right lung collapsed. Please keep him in your prayers.
7:30 pm update:Ethan's lung was starting to expand again by the time I left the hospital today. His heart surgery will be tomorrow around noon and should last 5-6 hours. I will update everyone as we know more. Thanks again for all your prayers.

11/1/2011
Our surgeon was just called to an emergency operation which will push back Ethan's surgery. We will keep everyone posted on when he is able to go in as soon as we know. In the meantime I'll just continue to stare at my precious boy.

Baby boy was just taken to the operating room. Let the prayers begin....

· November 1, 2011 at 4:13pm near San Diego

Ethan is out of surgery! Everything went well and he is back in the NICU. They are going to keep him pretty well sedated tonight and slowly wake him up again tomorrow. We are with him now and he looks good just a little pale. Thank you so much for your prayers, support and words of encouragement. It means so much to Mike and I. — with Michael Juarez.

November 1, 2011 at 8:41pm near San Diego