Week 34

We had our last visit to UCSF on 12-19-11 before our big move. The results were AMAZING! Isaiah now weighs 3 pounds and 12 ounces. This is at 34 weeks. Per the growth chart he is only 1 pound 3 ounces  down. Our little guy sure is a fighter!

We were also told that he is and has been practicing his breathing even though his lungs aren't developing. This gives us such hope. We were told that babies with CDH have difficulty breathing when they are born because they don't practice their breathing in the womb, this is of course along with the development of their lungs or lack there of. Babies with CDH also have issues with their eating after they are born. The Dr.'s keep saying that Isaiah is doing wonderful when it comes to his eating. They are always measuring the amniotic fluid and it always measures normal. Just means that Isaiah is doing what his mommy and daddy tell him to and that is to gain weight and gain strength!

We were given a move date, which is the 19th of January and they plan to birth Isaiah into this world on the 26th of January. Permitting everything goes good from now until then that is! I personally got a huge rush of anxiety knowing the exact date that our son will be here. But we are excited to meet him.

After exhausting every option, we have came to the decision that we will be staying in hotels until we are able to get into the Ronald McDonald house. We can't even be put on the list until our little guy arrives. So it looks as though we will be calling the wonderful world of hotels our "home" for a couple of months. But as long as we are close to UCSF in the event that we are called for an emergency, I am A Ok with whatever and wherever we will be laying our head. It is a long road ahead of us, but we will do whatever it is that we have to for our little guy!

I came across these great website that has more details about CDH and what is waiting for us:
http://www.chw.org/display/PPF/DocID/34373/Nav/1/router.asp

This is a great site that goes over what Isaiah will have to under go when he is released from the hospital:
http://www.breathofhopeinc.com/bringing-home-a-cdh-baby.html

32 weeks and counting

WOW…32 weeks pregnant already! I feel like time has flown by and now we are 53 days away from our due date and I am praying for time to stand still. I am not exactly sure what emotion fits right now…I am experiencing them all. Mainly I am anxious to meet our little guy, but I am also scared and nervous for what is waiting for him

However, Joseph and I started taking Hypnobirthing classes so it has taught me how to channel my emotions and turn them into positive thoughts. Please check out this website for further details. http://hypnosisbenefits.com/hypnobabies.html  This class is amazing! I recommend it to any expecting mom!

I have got to see and hear Isaiah 2 times since our last visit to San Fran. We had our baby shower in San Diego November 26^th. He was 2 pounds 11 ounces then and showing off on the big screen. Then I had another ultrasound with my Dr here in Reno on the 5^th of December. Isaiah weighed 2 pounds and 14 ounces which is 31 weeks gestation. As you can see by the chart, he is considerably small from what he is supposed to be:

27 weeks	14.41 inches	1.93 pound
28 weeks	14.80 inches	2.22 pounds
29 weeks	15.2 inches	2.54 pounds
30 weeks	15.71 inches	2.91 pounds
31 weeks	16.18 inches	3.31 pounds
32 weeks	16.69 inches	3.75 pounds
33 weeks	17.20 inches	4.23 pounds
34 weeks	17.72 inches	4.73 pounds
35 weeks	18.19 inches	5.25 pounds
36 weeks	18.66 inches	5.78 pounds
37 weeks	19.13 inches	6.30 pounds
38 weeks	19.61 inches	6.80 pounds
39 weeks	19.96 inches	7.25 pounds
40 weeks	20.16 inches	7.63 pounds
41 weeks	20.35 inches	7.93 pounds
42 weeks	20.28 inches	8.12 pounds

But his heart is still extremely strong and the Dr’s have no other concerns at the moment.

Our last follow up visit to San Francisco is the 19^th of December. We will be setting a date then to move there. They want us to move there around Jan 9^th-13^th but we will set a definite date on the 19^th. This is extremely nerve racking for us since we aren’t sure what the military has planned. We have recently been told that we will not get housing allowance for San Francisco. So we are supposed to live in San Francisco on 1 income and only receiving housing allowance that is $916 a month. We have searched thousands of places in the San Francisco area and the cheapest thing we have found is $1600 a month.

We have been told that we could stay at the Ronald McDonald house. However, we aren’t even able to be put on the list to stay there until after Isaiah is born. So we would have to live in San Fran for about 3 weeks or so in hotels and even then we aren’t guaranteed a room there.

So at the moment we are playing the waiting game. I just hope the military tells us soon where we will be living because this isn’t something that we need to have added to our plates right now.

We are doing everything we can to stay positive and live our lives as normal as possible. But to be honest, it is getting harder and harder. I pray that God gives us the strength to handle everything that is being handed to us and that something comes through financially. Please continue to pray for our baby Isaiah’s strength, growth and will to fight!

We love you all and thank you for your continued support and prayers. Joseph and I couldn’t get through this without you all and are blessed to have you all in our lives!

Isaiah on the big screen! (a 30 minute 4-d video from the baby shower ultrasound)

28 week follow up

Had a follow up at UCSF on Monday the 14th. We had the usual ultrasound followed by the doctor consult. 

Isaiah is growing!!! YEAH...he is now weighing in a little over 2 pounds and is now in the 20th percentile. We didn't really go into any details about what organs are or are not in his chest cavity. However, his heart is still ticking strong and the placenta is still giving  him the nutrients he needs. 

They talked to us about making the transition to live in San Francisco. We will be moving there around the 37th or 38th week. Which lands us in the middle of January. He said we would for sure be delivering within 7 days of the 2nd of February, which is my due date. We went to the Ronald McDonald house downtown San Fran and was able to take a tour. It is a nice place but we will continue to look for a place across the bridge. The parking was horrible and we want a place that we can have family and friends stay while visiting.

We are doing everything we can to stay positive and not get drawn up in the details of what remains ahead of us. We will do whatever it takes to make sure Isaiah has what he needs and to be where his chance of survival is greater!

We are living one day at a time and dreaming of his future!

Please keep the prayers going...God is hearing them!

Letter to Isaiah from mommy

To my son Isaiah,

There are so many things that I want to say to you right now. But I will start with these few things. I first off want you to know that when I first found out that I was pregnant with you, I have never felt so complete in my life. I was beyond happy and couldn’t wait to tell your daddy all about our little miracle. You truly are our little miracle since the doctors told us we couldn’t have children. But then there you were our miracle!

I know you are probably scared right now being in this big room with other crying babies, tubes connected to you all over the place, and several different faces that you keep seeing. But everything that is happening to you is to make you feel better and to help you grow and be a big healthy boy. I promise you that me and daddy will never stop fighting for you and will be by your side every step of the way.

There are so many people that have prayed for you to get healthy and that love you even before you blessed us with your presence. They are all still praying and can’t wait to meet you! There are so many things in this world that your daddy and I want to show you. We will NEVER give up on you no matter what!

I know you will fight as long and as hard as you can but I want you to know that if you feel you can’t fight anymore, it is ok to go with Jesus. But your daddy and I will keep fighting until you tell us its time. It will be so hard to say goodbye to you and you will leave a void that will never be replaced. But we all pray that you stay strong and fight this battle with us. We love you so much Isaiah and I promise you that I will be the best mommy that I know how to be and will always be here for you!

I love you my precious son. Your daddy and I can’t wait to bring you home!

Update at 26 weeks - November 2 at 10:36pm

I had a 26 week ultrasound today here in Reno!

Isaiah is 1.7 pounds and is now in the 13.9th percentile. YEAH...he is growing!

Currenlty his stomach is below his diaphragm (liver and intestines still up) but it is allowing his lungs to grow a little. I was actually able to see the lungs in the ultrasound. The Dr. told me to not hold to much hope on this because with CDH babies, the organs will go in and out throughout the pregnancy. But I say, "hey if an organ is out for a few days, that is a few more days the lungs have to develop without being restricted"

They took some measurements of the amniotic fluid, which they are measuring good. This means that he is drinking the fluid. It sounded weird to me at first but she said that there tends to be alot more fluid surrounding babies with CDH. So it is a really good sign that he is getting the nutrients he needs, he is just on the smaller side! 

He is kicking alot more now and I don't mind at all. I say kick away little man...get strong. 

So today was a wonderful day! 

I thank God every day and continue to pray that our little Isaiah will keep fighting and keep growing! I pray for strength for not only Isaiah but for us as well. 

No matter how big or small our battles may be, with God on our side, we can overcome anything! I will remain positive and keep faith in God and know that no matter what we do, Isaiah's destiny is in his hands! 

Please keep up the prayers! God is hearing them!

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!