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

Ethan's Arrival- Old Blog Posts

Baby Ethan Miracle Baby

Posted Oct 13, 2011 1:54am

Ethan Matthew Juarez was born on Monday, October 10th at 11:24pm. He weighed in at 6 lbs 10 oz and measured in at 21 inches. The NICU staff was in the delivery room when he was born and there was a section in the delivery room with equipment for Ethan. Right after he was born and the ambilical cord was cut the doctor handed Ethan to the NICU team to be assessed. They cleaned him and put a suction tube in his nose then let me hold him. I was able to hold him for a couple minutes and then he was whisked away to the NICU.
Ethan underwent tests immediately and the cardiologist was called in to do an echocardiogram. At about 1:00 in the morning Mike and I went over to the NICU to check on Ethan. Dr. Levy, the cardiologist was in with him conducting the echocardiogram and he had news for us that we were not expecting. It seems that the left ventricle grew more and was fully functioning!! He took away the diagnosis he had given Ethan of hypoplastic left heart syndrome and said that Ethan just had the VSD netween the two chambers and that he was having difficulty finding the valve that takes blood from the left side of the heart to the organs which he suspects is a narrowing of the valve.
He said that Ethan would be fine to undergo his stomach surgery the following day and wasnt sure what the xray showed on that end just that the information had been sent to Dr. Vasquez who would be performing the operation and should be contacting us the next morning. We heard from Dr. Vasquez around 11:00 and he had good news for us as well. He said that based on the xrays that he believed he could complete the actual surgery that day. He believed the gap was only the size of a vertebrae and he would be able to stitch the esophagus back together. Ethan went into surgery at about 2:45 pm and we were told it would last about 3 hours. My Dad and Stepmom came in time to meet Ethan prior to the surgery and stayed till it ended around 6:30. Dr. Vasquez told us that the surgery had gone well but that the disconnect was a little larger then he had anticipated and he was just barely able to connect the two ends together. He said that if Ethan moved to much or was moved to much that the connection could be easily severed so he placed Ethan in a medically induced coma and paralyzed him. He is going to keep Ethan like this till Saturday or Sunday. Ethan is currently intubated for his breathing, and has a PICC line in his head, but he still looks absolutely amazingly adorable to me.
Today they took him off the medication they had been giving him to keep the ductus in his heart open and they want to see how his geart functions on its own or if he'll need surgery on the valve to widden it or a graft. We should know more about his sweeet little heart in the next week or so.
Already God has worked wonders in this little man's life. I can say that my prayers have truly been answered and I am so grateful for the prayers and support of all of my friends, family and especially of my mom and Mike. Miracles really do happen and anything is possible with the power of prayer. Please keep little Ethan in your prayers. I will continue to post updates as we receive them.
XOXO-Renee

Old Pregnancy Blog Posts in Date Order

Posted Jul 25, 2011 1:20am

I had my bi-monthly Ob/Gyn appointment on Friday. Little Ethan now wieghs about 2 lbs 10 oz and I am measuring two weeks bigger than I should. It seems that my belly has popped significantly in the last two weeks. Ethan's cheeks are looking nice and chunky- I can't wait to kiss them when he arrives! No updates on Ethan's heart, everything is the same for now. We meet with the cardiologist on Thursday and will know more about the birth plan, surgeries, and what to expect at that time. I'll keep everyone posted as we learn more. Thank you all for your continued prayers and support. I can not express how much it means to my family and I.

Posted Jul 29, 2011 2:02am

We had our appointment with the cardiologist today and received both good and bad news. First the bad to get it out of the way- Ethan has started to develop fluid in his heart which basically means that his little heart is working extra hard. The cardiologist has changed our once a month fetal echiograms to an every week occurance to make sure that the fluid does not continue to increase and little Ethan does not go into heart failure in utero. This means that i get to travel down to San Diego every week now to be monitored by either the cardiologist or my Ob/Gyn specialist. :(
Now for the good news- it seems that in Ethan's case the power of prayer has worked miracles and his left ventricle has actually grown! Initially when we had seen the cardiologist at our 20 week appointment he had indicated that it was highly unlikely for the left ventricle to grow at all and that probably it would get smaller. The cardiologist attributed the growth to the VSD's (or holes) between Ethan's right and left chamber allowing blood to flow from the right chamber to the left ventricle. We asked if it were likely for the left ventricle to continue to grw and he thought not but said there was maybe a 20% chance it could. What does this mean for Ethan??? It means that the surgery he will require shortly after birth will be slightly less risky since he does have more of a presence of the left ventricle. His survival after surgery has increased because of this. Praise God!
Please continue to keep Ethan in your prayers. We know now that miracles can happen and we are hoping that his smaller left ventricle will continue to grow. Blessings and heart hugs to all!

Posted Aug 6, 2011 8:31pm

Hi everyone, this is Mike giving you a update on baby Ethan Matthew's progress. Renee has been experiencing contractions, enough to be concerned and bring it to the attention of the OBGYN Friday. The doctor did another ultrasound and found that their is a little more amniotic fluid than normal. She also had difficulty finding Ethan's stomach. When she found it she mentioned that it was smaller than normal. The doctor put in a order for bi-weekly visits. There will be 45 minute stress test to monitor Ethan's heart. She also placed Renee on modified bed rest to alleviate pre-term labor. Fortunately the appointments are in San Marcos rather than in San Diego. The baby will be born in Los Angeles so the best heart surgeons will be available. I am very thankful for everyone's prayers for our son. A special thanks to Renee for being strong through all the ups and downs physically and emotionally. She is an amazing woman.

Six appointments later....

Posted Aug 22, 2011 12:55am

Sorry I haven't posted lately. I've been in a bedrest "funk" the past two weeks. My doctor put me on bed rest due to the contractions I have been having in combination with her diagnosing me with polyhydramnios (too much amniotic fluid). Normal amnniotic fluid levels are between 12-22 centimeters and I have been measuring as high as 31 centimeters of fluid. A side effect of the polyhydramnios can be preterm labor, hence the bedrest.
I do non-stress tests two times a week now where they monitor the baby, check my amniotic fluid levels, monitor the baby's heart and monitor contractions. These appointments are usually 45 minutes to an hour and a half depending on how well Ethan cooperates. He likes to move around a lot and he has a pool of fluid to swim in so it's easy to lose him on the heart monitor.
This last week we had a cardiologist appointment on Thursday. Mike and I went down to see Dr. Levy in San Diego for another fetal echiogram. We had some really good news. The VSD's (holes in Ethan's heart) have both closed up on their own and his left ventricle grew a little more. Ethan is turning into my little miracle baby and I just know it's from all the prayers from friends, family and church members. Dr. Levy indicated that if the left ventricle continues to grow then he may just have to have a cardiac catherization performed to balloon his aortic valve. We won't really know till after Ethan is born but this was the best news I have in months. I'm trying to not get my hopes up to much for this but it would literally be a miracle.
On Friday I had an appointment with my perinatal specialist. Actually my perinatal specialist was on vacation and I saw another doctor in the practice. Half way through the ultra sound I asked if she was able to see Ethan's stomach as our normal doctor had trouble finding it at the last two ultrasounds. She said that she couldn't locate the stomach at all. Near the end of the appointment she asked if I had any additional questions and I asked what kind of repair would need to be done to fix his stomach issues. She said that he might have tracheal esophageal fistlua or esophgeal atrsia. Best case scenerio he just has a blockage in his esophagus which they can insert a tube down his throat after he is born and that will clear out the blockage. She said that the worse case scenerio would be no airway passage and that the doctor's would not be able to ventilate after birth and he would pass away.
It's crazy how this pregnancy is going and how one day I'm feeling on top of the world and the next I just want to crawl in a hole. My mission now is to continue to rest. Keep positive and keep Ethan in for four more weeks so he can continue to grow and get strong. Other than that I give it all to God.

Recent appointment in Los Angeles

Posted Sep 4, 2011 2:24pm

The recent visit to Kaiser in Los Angeles brought more bad news. It seems that prior to Ethan having his open heart surgery he will need to have his stomach/esphagus surgery first at Kaiser. He will need to recover from this surgery and then will be transfered over to children's L.A. This means potentially another month of being in Los Angeles away from our other children.
At this point we are second guessing our decision to have Ethan in Los Angeles. If we had him there it would be three to four months of time away where if we have him in San Diego I would be able to visit Ethan during the day and drive home to be with the other children in the evening. I understand that it is important for Ethan to have the best care possible but the surgeon's at Children's L.A. and Rady's are ranked pretty much equally, it's just the post care in L.A. is ranked so much higher as they have their own cardiac post care unit. I have been praying all week for clarity and guidance and would appreciate any feedback from family and friends. I need to make up my mind by the 12th of September as that is when the doctor's would want me to go to L.A.
My perinatologist in San Diego thinks we should stay down here to deliver. She is a mother and is looking at the over all picture for the family plus being that I will be postpartum with a sick baby away from the majority of my support system. Our cardiologist from San Diego still recommends Los Angeles as so much can happen after surgery and post care is so important to combating infection and other potential post surgery risks.
Please continue to keep us in your prayers and any words of advise are definitely welcomed from all.
Much Love and Appreciation,
Renee

Hello All!

Posted Sep 23, 2011 6:48pm

Thought I would give one last update before Ethan arrives.
First of all I wanted to thank all of our friends, family and friends of friends that attended the fundraiser for Ethan. We have been so overwhelmed by the support of everyone. I was especially surprised by the donations from local business owners that don't even know us.
As far as our birth plan we have changed things up a bit because of the prenatal diagnoses of TEF/EA. We have decided to have Ethan down here at Kaiser in San Diego. He will be taken to the NICU there and then will undergo tests, fetal echo, MRI, etc. Once the exact prognosis is given on his stomach issues he will have surgery to have a gtube put directly into his stomach and depending on the extent of the possible diconnect of the esophogus may have that either connected to the stomach or tied off so the stomach is able to grow. After he is stabilized from that operation he will be transfered by ambulance up to children's L.A. for his first heart surgery. He will be in the CICU up there until he is strong enough to be transfered back down to San Diego where he will await his second surgery to connect the esophogus to his stomach which might not be until he is six to eight months old from what the stomach surgeon has told us.
Hopefully things are better than what the doctors are anticipating but as of now they tell us he will need to stay in the hospital for the duration which is why we will be having him transfered back down to San Diego.
Good news is that he is now over 7 pounds which was my goal weight for him. I have been having contractions and am now 2 centimeters dilated so I'm hoping to have him sometime next week. If not they have scheduled an induction for October 6th.
Again, we thank you all for your support and words of encouragement. I don't know how I would've made it tis far without knowing I have so many people sending prayers and positive thoughts our way. Much love to you all. I will post an update again as soon as baby boy has arrived.

Pregnancy Post #1 from old blog

At my routine 20 week diagnostic ultrasound, the ultrasound showed that  baby Ethan would have several heart defects.  After a fetal echocardiogram was performed with the pediatric cardiologist it was discovered that the primary diagnosis was Hypoplastic Left Heart Syndrome, a very serious condition where the left side of the heart is severely underdeveloped.  In addition to that, my baby has aortic valve stenosis, small ascending aorta, coarctation of aorta, and venticricular spectal defect (VSD).   Ethan Matthew will need surgery within 5 days after he is born. A second surgery will be performed at 3-6 months to continue the repair on his little heart.  He will need 1 more surgery to rebuild his heart when he is 3-5 years old.  If the 3 procedure process to rebuild and redirect the blood flow in his heart are not successful, Ethan may need a pediatric heart transplant.  Even if the surgeries are very successful, Ethan will be a heart patient needing care for the rest of his life.

New Blog

I am creating a new blog that I'm hoping will be more user friendly than my last.  I'm not really computer savvy and I'm trying my best to not have anything else in my life that overwhelms or stresses me out.  I do feel that it is good to have a centralized location where people can be updated on Ethan's condition and hopefully we can be used as a resource to other families that have children with a CHD or TEF/EA.  I think I'm getting a little ahead of myself for now though.   For now, I just want to thank everyone for following our story.