Follow up appointment at UCSF - October 17 at 8:32pm

So do not fear, for I am with you; 

   do not be dismayed, for I am your God. 

I will strengthen you and help you; 

   I will uphold you with my righteous right hand 

Isaiah 41:10

We walked into our appointment with the hopes of having the tracheal occlusion procedure for Isaiah; however, we have ended up on a different path. 

Isaiah's growth isn't where it should be. In fact, as far as the growth process goes, at his 22 week check up, he was in the 19th percentile. Today at 24 weeks, he is in the 12th percentile. Because he is so small, they don't want to put him under the stress. Which we are on board with!

His heart is remaining strong and the placenta is working as it should. 

And there are no other concerns from the doctors at this time. No other organs are in his chest cavity, which is good. But we were told by the Dr. and a friend (who is going through the same thing as we are. She is set to delivery in a couple weeks so please keep Jessika and her baby girl Rowan in your prayers) that the organs can go in and out of the chest cavity so don't put too much stress on that. 

The plan now is to keep a close eye on his growth. So for the next 3.5 months I will be having an ultrasound every 2 weeks. 

Thankfully we won't have to travel to San Francisco for all of these appointments. I will be able to see one of my 3 doctors here in Reno. Which she is a high risk pregnancy OB, so we are still in great hands :)

We also found out that our due date is not the 28th of Jan, but the 2nd of Feb. Only a few days difference, but it does matter with regards to the growth of Isaiah and what percentile he is in. 

The Dr informed us that we will be induced at 38 weeks, which is the middle of January.

So for now...we pray that Isaiah grows and gains strength. I asked the Dr if I could start giving him steroids and giving him some muscle milk (LOL) he said UHHH NO!!! All in jokes, but seriously, this is a whole new battle that we are facing. 

PLEASE...any prayer list that you can add us to, PLEASE DO! The next 3.5 months are going to be extremely crucial in the progression of his growth. 

Our first apt at UCSF - October 1 at 9:23pm

22 weeks pregnant: We had our first appointment at UCSF Friday the 30th 2011. It was our first consult with the Pediatric Surgeons, Perinatologist, Social Worker, Radiologist, a Cardiac Sonographer, and some others I am failing to remember at this moment.

We walked in thinking our son had a bilateral CDH and walked out knowing that he has a severe right sided CDH and left waiting for more answers.

Isaiah’s stomach, intestines and liver are up in his chest cavity and neither lung is forming at the moment. His heart is strong but the ventricles are small as is to be expected with his condition (The ventricles are the tubes that come off the top of the heart. One supports the body the other the lungs). At the moment there are no other anomalies that the Dr’s are worried about, so it is just the CDH. Which we are fortunate because a lot of the cases have additional anomalies that affect the overall care and survival of the baby! However, the Dr’s don’t have enough data to give us an accurate prognosis of survival with a right sided CDH in his current condition which is still considered to be severe!

At this point we are unsure of what to expect next. The Dr’s will have a meeting on Tuesday the 4th to discuss our case to see if Isaiah is a candidate for the tracheal occlusion procedure in utero. Fetuses on the most severe end of the spectrum with liver up and LHR (lung to head ratio) less than 1.0 (Isaiah is at .5) are candidates for prenatal intervention.

While in the uterus, the fetal lung constantly makes fluid that escapes through its mouth and into the amniotic fluid. When the trachea is blocked, this fluid stays in the lungs. As it builds up, the lung fluid expands the lungs, stimulates their growth, and pushes the abdominal contents (liver, intestine) out of the chest and into the abdomen. The goal of this treatment is to have a baby born with lungs that are big enough that the child can breathe and provide itself enough oxygen to breathe on his own.

So we are praying that Isaiah made a convincing enough story that the Dr’s believe he is a candidate for this procedure. If he isn’t, then our next step is to go continue with a “normal” pregnancy and pray that we go full term. We will deliver in San Francisco, so most likely we will have to go there a couple weeks before my due date. Then, it’s a whole other ball park. We are praying that Isaiah is a candidate for the tracheal occlusion. And being that he doesn’t have any other anomalies, it looks good. Plus they took me off the Lovenox shots, which was a check mark against us.

We do have to go back on the 17th of October when we are 24 weeks to get additional measurements of Isaiah’s lungs and further testing. Because the tracheal occlusion procedure was designed for LCDH (left sided) there aren’t many case studies that the Dr’s can compare our case to. However, all of the case studies have been done at 24 weeks.

So for now, we wait to see what our plan of action is. We walked away knowing a little more than what we did walking in. Plus we go to take a tour of the NICU. To see all of those little babies really put a new light on everything.

We remain as positive as we can be and continue to pray for a miracle! We know that whatever happens; it is God’s will!

Thank you all for being so supportive and remain to keep us in your prayers!

From the start - September 24 at 8:59pm

Joseph and I wanted to start this group so that we can keep everyone updated on the status of our fighting Isaiah. This is going to be a long journey, but we trust with Gods will and all of your support, love, and prayers, we will make it through this together. And come out with a strong healthy boy that will lead a long and full life.  

Please don't hesitate to ask any questions during these next few months. We will do our best to keep this page updated every step of the way.

On Thursday, September 8th 2011 we went into the Dr to find out the gender of the baby. We soon found out that we were having a baby boy. Of course Joseph and I were thrilled with this news, but either way it went, we just prayed for a healthy baby. Our little guy was being very active, so it was hard for the ultrasound tech to get a good image of his chest and other vital organs. We were told to come back on Thursday September 15th for better images. So I told Joseph not to worry about coming, since he likes to make it to all appointments.

Thursday the 15th came around and I was beside myself to get to see our little guy again. He has always been so active whenever he is on the big screen! Little did I know that the Dr was really looking for the signs of RCDH (Right-Sided Congenital Diaphragmatic Hernia).  Almost 2 hours later, she diagnosed him with this and 10 minutes later I was up on the table getting an amniocentesis. 

I was so overwhelmed and an emotional wreck that what the Dr was saying was going way over my head, until she mentioned termination of the fetus. My heart sunk.

I got home that night, called Joseph home from work, and we immediately started doing research, reading forums, posts, and trying to educate ourselves as best as possible.  We both agreed that termination was absolutely out of the question. 

We found out that RCDH is only 2% of the 2500 cases a year, the other being left sided of course. CDH is as common as spinal bifida and cystic fibrosis yet there is minimal information or tests to detail what the cause for CDH is. For more information on CDH please go to: http://fetus.ucsfmedicalcenter.org/cdh/

This link will take you to UCSF (University of California, San Francisco). This is the hospital that we are going to be visiting in the next couple of weeks for a day full of testing.

At the present time we know that Isaiah's small intestine and liver are forming in his chest cavity and his heart is pushed all the way to his left side. The Dr. was unable to see the diaphragm so was unsure of whether the stomach was in his chest but could determine that is was below the heart.

At this time we are unsure of all of our options or what plan of action we have, so please keep us in your prayers and we will keep you all updated. We did find out today the chromosome test came back normal so there’s one small victory in a war with many more battles.

Starting this blog

I have been keeping facebook updated as much as possible, but figured this would be an easy way to keep every update in order and a better way for me to make a scrap book for Isaiah so he knows all of the love and prayers he has even before he is born! So I am going to copy what I have written so far then keep moving forward!