It's Been a While..

I guess it's been a while since I've posted. Life has been a little crazy with work and doctors appointments, and when you throw in the other duties of everyday life...it doesn't leave much time left over.

I've been keeping busy with substituting, which is wonderful! And, for the past 3 weeks I've had at least 1 doctors appointment if not 2. Last week Anthony and I traveled to Egleston to meet with Dr. Kanter and one of his nurse practitioners. I say travel like it's hours away, but it really only took us about 40-45 min. to get there (granted it was in the middle of the day with barely any traffic). Parking was pretty crazy but once we made it into the hospital it was pretty easy to find our way to the outpatient cardiac services office.

Dr. Kanter does not perform surgeries on Wednesdays and instead schedules a few sessions to meet with parents of children who will be having surgery. Our appointment was towards the end of the "scheduled time period" for these meetings and there were a few "chatty" parents ahead of us according to one of the nurses, haha! We ended up waiting about 45 minutes before Margareth, a nurse practitioner, came to give us a tour of the CICU (cardiac intensive care unit). This is where Josiah will be before and after his surgery. The entire unit is open so there are no individual rooms, and the beds that the babies are in are called Ohio beds...my dad enjoyed the name ;). They are pretty neat, not the enclosed little beds that you would think of. They are actually square, open, and can be raised to an angle. Margareth took us to see a little baby girl who had just had similar heart surgery that day. I was kind of surprised they allowed us to see her but I am thankful they did. I don't think I can even remotely fully prepare myself for when that will be Josiah laying in that little bed, but it definitely allowed me to prepare for what all he will be hooked up to. It only took about 30 seconds before I started tearing up while margareth was explaining what everything was and why it was needed. Looking at a tiny little baby connected to a breathing tube, IVs, drainage tube, a tube down their nose, monitors on their forehead, etc. is so far one of the hardest things I think I have personally witnessed. I just had to keep telling myself that they keep these babies well medicated so that they don't feel any pain and also a little sedated so that they will sleep most of the time. Everything is taken in "baby" steps and Josiah will slowly be taken off of different things as he improves.

We found out that Josiah will probably be transported by helicopter to Egleston, and will then spend about 1-2 days in the CICU before actually having his surgery. They like to do all of their own tests, just to make sure everything looks ok and that he is healthy enough to have the surgery. The surgery itself will last between 6-8 hours...umm can we say LONG and STRESSFUL day?? He will then be taken back to the CICU and will spend about 7-10 days there, give or take, depending on how he is doing. Once Josiah is able to regulate his own body temperature and has passed all of his "tests" he will then be moved to the step-down unit. Here, he will more than likely still be on a feeding tube and possibly the drainage tube? I can't exaclty remember what the nurse said. Anyhow, we will actually have our own room in the step down unit and Anthony and I will both be able to spend the night. In the CICU we can stay 24 hours if we want, but there is no place to sleep. They do have sleeping rooms so I'm sure we will be getting some use out of those.

After our tour, we got to meet with Dr. Kanter. he seemed like a very nice man, and answered all of my "20" questions! I appologized when I drug out my little notebook, but he said he liked to see an organized mama, haha! Between Dr. Kanter and the other surgeon, they perform about 800-900 surgeries a year! I can't even imagine!! Since HLHS is pretty uncommon I asked how many Norwoods he performed each year. He estimated between 25-30 surgeries per year with babies from all over the southeast. He again mentioned the length of stay for Josiah and that it averages about a month, but he's had babies leave in 8 days or after 3 months. One of the questions I had been wondering was why there was such big gap in age for the last surgery (the Fontan) which happens between 18 months and 3 years. Dr. Kanter explained that it depends on several different things. How healthy the child is, how big they are, and also how the Fontan is performed. Dr. Kanter mentioned he has been doing the Fontan a little differently now and instead of using something from Josiah's body he has been using a tube (that will in the future hopefully keep his heart from working too hard) to improve circulation. In order to use the tube the child needs to be a little bigger to make sure their body does not grow out of the tube.

After some more chit chat it was finally time to head home. Anthony and I talked about what life will be like in just a few short months and how we can't wait for Josiah to get here. It will be a bumpy road for a while, but I know we will get through it. I've sad this again and again, but the amount of support and prayers is just overwhelming. I just received a card in the mail yesterday from a church care team in North Carolina that said we are in their prayers.

Speaking of North Carolina, last week Anthony caught a little documentary on ESPN about Greg Olsen, who plays football for the NC Panthers. Greg and his wife just gave birth to twins, a boy and a girl last Tuesday. Are you ready for this...their little boy was diagnosed with HLHS before he was born. Greg and his wife flew to Boston to see if they were candidates for the same surgery were iquired about and they were denied as well. There little boy TJ had his first surgery about 5 days ago and is doing well. Here is a link to a video of their story HERE I would encourage you to watch it, as there are a few parts I left out. Greg has also started a charity for children who have a congenital heart defect, you can visit that site HERE.

I also had my glucose test last Thursday and I did NOT test positive for gestational diabetes. And speaking of doctors appointments, I have another one today with the perinatologist, not really sure why I have to continue to see this doctor since we know what the problem is, I think I'll ask them today =)

Bring The Rain and Update

Tonight I decided to tag along with Anthony to the gym. I used to go all the time, but between working, and getting stuff done around the house, I've been slacking! I grabbed my iPod, towel, and water and we were off. Anthony and I share the same iTunes account, and there are good and bad things about that. He is what you could call a connoisseur of all types of music....I...am not. Needless to say, about half of the time I was on the elliptical, I had my finger on my iPod skipping to the next song. I finally came across a song I thought I recognized. It was actually one of my favorite songs, but I hadn't listened to it in a while. I thought I'd post the youtube video to share. It is such a great song that just has such meaning to it right now...enjoy =)

**Update on Josiah:
I had my second appointment with Dr. V (the pediatric cardiologist) today. This time I was only there an hour, I'll take that over 2 1/2! Everything looked the same which is alright, it's better than looking worse! Dr. V mentioned the right side of Josiah's heart looks very strong, PRAISE THE LORD! This is a wonderful thing, seeing as how it will be doing the work of both sides...that is unless the Lord decides to heal him before he joins us in this world. Which I have no doubt He can do, we will just wait and see what path He chooses to lead us down.

I don't believe I mentioned this in any of my other posts, but last week Dr. V asked if he could send our ultrasound up to Boston Children's Medical. Boston Children's is considered the #1 hospital for the type of surgery Josiah will be having and right now they have been doing some experimental surgery for part of Josiah's condition. The twist to this surgery is that it is performed while he is still in my womb! It is SO crazy to me that they can do that! The surgery would basically attempt to expand the narrowing of his aortic valve by inflating a small balloon. Anthony and I had already decided we would not persue this route, but we allowed Dr. V to send the ultrasound video anyway. We heard last week that I was not a candidate for this experimental surgery, but they did confirm Dr. V's diagnosis. It was kind of nice to have a second opinion from the top children's hospital in the nation as far as cardiac issues are concerned.

**I also wanted to thank all of you who have told us that we are in your prayers/church's prayer lists. You have no idea how overwhelmed and grateful we are for each and everyone of you! Thank you all so much for keeping the 3 of us in your prayers, what a blessing it is!!**

Josiah's Prayer Quilt

Over the Labor day weekend we had family come into town, my Uncle Mike and Aunt Debbie. Growing up we spent a lot of time with them along with my cousin Jason, who is a year older than I am. They are the closest family we have since it's only about a 3-3 1/2 hour drive to where they live in North Carolina. I enjoy the time we get to spend together, and I wish we could do it more often!!

Now that I'm married it's a little different when we have family in town. They usually stay with my parents and I plan a lunch at my house at some point during their stay. We planned for the family to have Saturday lunch at my house and enjoy spending a little time over this way. Towards the end of our get together, Aunt Deb went to the car and brought in 2 gift bags for Anthony and I to open. I quickly reminded her that that was completely unnecessary!

**One thing I've learned, is people love to buy baby stuff! Especially my mother, who has decided that Josiah needs a little something every 29th day (his due date is Jan. 29th) of each month until he is born...I guess we need to hurry up and get baby furniture so we will have somewhere to put everything!!

Before I opened the first bag, Aunt Deb had me read something on a piece of paper. As soon as I read the first sentence I realized that the gift was a quilt. Each sentence explained certain parts of the quilt and what they each meant. It almost brought me to tears. Aunt Deb mentioned that she had begun working on it sometime around March/April I believe. She had decided she wanted to make us one after she found out about our miscarriage in January. It is by far one of the best gifts we have ever gotten! Mostly because of the thought put into it and the meaning behind it. She also told me that the edging around it was hand stitched by not only her, but also my biological grandmother and great grandmother. How special!!! And what an awesome thing we will be able to pass down. The other bag contained a matching little pillow she had made along with a book filled with little prayers that you can begin to pray for your child.

Here is a copy of the explaination of the prayer quilt (you should be able to click on it to see it better):

 

 

 

One of the corners. The back of the quilt is made
out of the striped material as well

Cute little pillow to match!

They're a little difficult to see in the picture, but there are little pieces of green thread all over the quilt. They are for making prayer knots. Anytime you pray about something you make a little knot...we have made plenty since receiving this beautiful quilt!

Thank you Aunt Debbie!!

We Have a Name!!

When we found out we were pregnant, Anthony and I had agreed that if the baby was a boy then we would use his middle name, Truitt, as either the first or middle name. We had said we didn't really want to use any other family names, but after going through sooo many names nothing sounded right except for one. My dad's middle name is Kent...Truitt Kent sounded perfect! For a while we had said that the name would be Truitt Kent for a boy, and everyone liked it. However, as time went on it just didn't sit as well with me..kind of hard to explain.

Once we found out Baby B had a heart condition, we knew we had to pick a name with a strong meaning. I began going through books and googling different things, but still nothing. Finally I decided I would just pray about it...duh...I should have done that from the start! So I began asking the Lord to give us the perfect name. About a week after praying, Anthony's cousin sent me a message letting me know that she was praying for us, and that when she prayed she was calling Baby B Josiah which means God heals/Jehovah saves. As soon as I read that she was calling him Josiah I instantly began to cry. The Lord had answered my prayer through Katie...I knew in my heart that this was the name for our baby boy! I immediatly called Katie to tell her (even though she had said she completely didn't expect us to name him that). Anthony was at the gym at the time..and I couldn't wait for him to get home so I could tell him! He loved the name as well as the meaning.

And, so there you have it....Josiah Truitt Barfield!!
If you haven't ever read about Josiah in the Bible, I encourage you to do so. He was actually the King of Judah, and what a godly man he was! It is so nice to finally have a name, and in a way makes it more real. January 29th can't get here fast enough, we are ready to meet you Josiah!!

"Neither before nor after Josiah was there a king like him who turned to the Lord as he did,

with all his heart and with all his soul and with all his strength..."

~2 Kings 23:25

Hypoplastic Left Heart Syndrome

Hypoplastic Left Heart Syndrome...after about 2 hours of a combination of waiting in the lobby and trying to get a good scan of Baby B, this was our diagnosis. I go back next Wednesday to rescan (they could not get a good picture of his mitral valve..he has learned to be a stinker about cooperating...). Dr. Videlefsky...or Dr. V for good reason, is pretty confident that this is what Baby B has and I feel pretty good about him being right as well. After all he is a pediatric cardiologist and focuses only on the heart and not the specialist who has to know a little bit about every part of the baby. So, I guess our diagnosis technically could change..but we will wait and see.

Let me first say how impressed Anthony and I were with Dr. V. He, along with his ultrasound tech were so incredibly patient with Baby B. They ended up alternating twice trying to get the pictures that they needed to make a diagnosis. Once Dr. V finished his second scan he told us he was going to go visit another patient, but after that he wanted to spend a lot of time with us in his office explaining everything that he had found.

We sat down and Dr. V drug his chair over to the same side of his desk that we were sitting. He took out a piece of paper and a pen, and then proceeded to tell us he wanted to draw us a picture of what exactly was going on with Baby B's heart. He began by telling us that Baby B has (from what he sees) a very serious heart condition known as Hypoplastic Left Heart Syndrome. He then started drawing a picture of a normal heart and how it functions, including the lungs and body. He then explained to us how blood travels through the different chambers, arteries...basically the complete function of the heart. Next he began to point out what he saw to be wrong with B.

B has a hypoplastic left ventricle (hypoplastic just means small). This would explain why Dr. Pohl's ultrasound tech had trouble getting a good picture of all 4 heart chambers. He also has critical aortic valve stenosis (which means his aortic valve is very narrow). Dr. V also mentioned he could see where B's left ventricle tried to enlarge in order to push more blood through his aortic valve but was unsuccessful and has in turn caused some damage to the walls of his left ventricle.

The typical treatment for this is called the Norwood Operation and is broken up into 3 surgies. It has been around since the 1980s and has an 80%+ success rate.

Stage 1- will be at birth
Stage 2 - between 4-6 months
Stage 3 - between 18 months and 5 years

I never thought I would say I was greatful for taking that awful biology class my freshman year of college..and I can clearly remember staying up almost all night before a test we had, trying to memorize the entire heart because we were expected to redraw it. I am now thankful for that class! It made it a little easier to understand what Dr. V was explaining to us and what each surgery would consist of. I do not want to overload your brain with all kinds of medical terms or even try to explain what each surgery will do. But with each surgery Baby B's blood flow/circulation will greatly improve.

Now let me be completely honest and share with you what Dr. V has told us. There is (as of now) no cure for what Baby B has. The Norwood Operation only eliminates Baby B's use of his left ventricle and essentially reroutes how blood will flow through his heart. All of the work that the left ventricle normally does will be done by his right ventricle. Praise the Lord that doctors have been able discover that this is even possible and will give our baby a chance at life!! But, with the good comes the bad sometimes. Because Baby B's right side of his heart will be pulling double duty this means that his heart will more than likely tire out faster. Dr. V mentioned that many children by the time they are somewhere in their 20s usually require a heart transplant.

Right now my mind is not even focused that far in the future, and who knows what advances science will have made by that time anyhow. For now all of my attention is focused on keeping B put and allowing him to grow inside of me so that he will big and strong for what he will have to face when he is born. He has a strong heartbeat that was at 140 yesterday and from what every doctor has told me, there is no reason why I shouldn't be able to deliver B naturally. Unless of course "normal" emergencies arise and there would be a need for an emergency c-section. Some have asked what will happen after he is born. If all goes as planned, they will take him straight to the NICU and begin an IV of prostoglandin (a medicine that willl keep a certain part of is heart open that normally closes after birth). He will remain there for 2 days and then they will transport him to Egleston. By this time I should be alright to leave the hospital and be able to go with Anthony to be with B.

Many have asked how we are doing emotionally, and I can honestly say we have an over abundant sense of peace and comfort about this entire situation. Now I would be lying and we wouldn't be human if I said we didn't have our moments from time to time. It's hard to think about the life threatening situation your baby is going to have to face as soon as he is born. We have chosen to look at the many blessings the Lord has given us so far. The blessing of knowing about B's heart before hand rather than after he is born. The blessing of having the Norwood Operation to help B's blood circulate through his heart in a different manner. The comfort of knowing that Christ knew exactly how B would be formed before he was even conceived and that none of this information is knew to Him. The privilege to go the the Lord in prayer and ask for specific healing of B's condition and knowing that if He so chooses, He can perform a miracle and completely heal B before he even gets here. Let me say we know that Baby B WILL be healed one way or another, whether it be from a miraculous healing from our Lord, through the surgery performed by the doctors, or when He meets Jesus and is given a new body. Baby B wins no matter what...

As I have said many times before, the Lord places trials in our path for a good reason. We don't know what the Lord has in store and I look forward to the day when I can look back and say "So...this is what you had in mind..."

"Before I formed you in the womb I knew you,

before you were born I set you apart..."

~Jeremiah 1:5



Not IF You Face Trials, But WHEN

***UPDATE: I wrote this post on Friday after we had our appointment with the specialist. Please note that Baby B's diagnosis has changed, but from Friday-Tuesday morning this is what we believed he had. I felt I should still post this because it is a part of our journey. Unfortunately his new diagnosis is not better. In fact, not that I wish he had a heart problem, but since he does I kind of wish it would have been this rather than the news we received yesterday (9/25/12)...I will post soon about what we have found out)***

Today we had our appointment with Maternal Fetal Specialists. Dr. Pohl referred us to the specialist after we had our 20 week anatomy scan because they were unable to get a clear picture of the 4 chambers of Baby B's heart. Our appointment was at 9:30 (really 10 but I had to fill out a huge packet of papers).  Shortly after 10 I was called back to check my vitals and leave a urine sample (what's new? haha). I was then sent back to the waiting room and Anthony and I proceeded to wait 45 minutes....yes, I was actually starting to get a little annoyed. Finally they called us back and we were taken to room one, the perfect place to take a nap! Dim light and no noise =) The ultrasound tech was very nice! Baby B was actually in a good position to check his heart so she went ahead and did that first. **his head was on the right side as well...every other time we've seen him he's been on the left, guess it was time for a change!**

We could definitely tell that this scan was more in depth as you could see the baby's blood flow in the heart (and other parts like the umbilical cord) with different colors on the screen. The entire week I had had such a peace about what we were going to find out at this appointment. I expected the tech to say "alright, I don't see any problems, baby boy is perfectly fine". However, as the scan continued and the tech remained pretty quite I felt in my heart that something probably wasn't right. I could tell Anthony felt the same way as he will usually talk to me and say "oh look at that", etc. She proceeded to cheack other parts of the baby (measuring the head, looking at the brain, etc) pretty much what my doctor's office had done last week. She also reaffirmed Baby B was definitely a boy! After the scan we waited for the doctor to come in and tell us the results. After about 10 minutes of waiting Dr. Read finally knocked on the door and walked in. He introduced himself and and asked why we believed we were here. I told him what Dr. Pohl had told us (about the 4 chambers and movement of the wall). He then proceeded to tell us that the baby did have something wrong with his heart. The next several minutes, we received what seemed like a whirlwind of information...

Dr. Read explained to us what he believed to be the 2 defects of Baby B's heart (this diagnosis will be confirmed at my appointment next Tuesday with Dr. Videlefsky, the Pediatric Cardiologist). 1) Transposition of the two great vessels and 2) Ventricular Septal Defect. So...what does that mean? Let me explain to the best of my knowledge, and I'm sure I'll learn more as we have more doctor's appointments:

1) Tranposistion - this basically means that the 2 main arteries leaving the heart are switched which does not allow adequate mixing of oxygenated and unoxygenated blood to mix.

2) Ventricular Septal Defect (VSD) - this is a hole in the heart. And, according to Dr. Read this is actually an ok/good thing right now as it is allowing some of his blood to mix.

The only way to fix transposition is with surgery, actually 3 surgeries from what Dr. Read explained. But, at least it IS fixable! What will more than likely take place (keep in mind this could change I guess, we will find out more next Tuesday and at another appointment that we will have with a pediatric cardiac surgeon). is after Baby B is born he will be given some medication (from what I've read it might be prostaglandin) and will then have to be stabalized. Once he is stabalized he will be transported to Elgeston Children's Hospital where he will undergo his first heart surgery. Now, I'm not exactly sure when the next 2 surgeries will take place, there was a ton of information to take in at the time, but I believe Dr. Read said all 3 surgeries would be completed by the age of 6 months. SHEW...what a lot to comprehend!!

It's kind of difficult to breakdown all the emotions and thoughts that were running through my mind while in the ultrasound room. Part of me wanted to breakdown and have a good cry, but the other part of me wanted to hold it all together so that I could understand everything Dr. Read was explaining to us. You could classify me as the "worrier" type, I am definitely the emotional one in the marriage...that's alright I'm a girl! Today I was not the normal "me"...I have no doubt the Lord held me together as we received the news about Baby B and all the things we learned we are going to experience after he is born. You know, you usually tend to say to yourself or to someone who is going through something big like this, "I have no clue how I would feel or how I would handle that! I don't think I would be able to...". But, you know what...you alone are not getting yourself through whatever trial you may be expriencing, it is none other than our Lord Jesus Christ! He gives us exactly what we need, He sustains us and holds us together when we want to fall apart. I have no doubt He was right there with us when we received this news, He had to be...because it is an unexplainable feeling of comfort and a clear mind that I had as Dr. Read was explaining everything to us.

As we were waiting for the nurse to come back in to let us know when our appointment would be, the song "If You Want Me To" by Ginny Owens popped into my mind... you can listen to it HERE. I have no idea what the Lord has in store for us and others during this trial. And, keep in mind He never said if you experience trials, but WHEN you experience trials. I do know He uses all things for His glory. I will just continue to pray for His will to be done and that some day I will understand why He allowed us to go through this. Maybe it is to draw us closer to Him, maybe it's so someone will come to Christ, I'm not sure what all the Lord will do from this trial, but I know it will be something! I will choose to accept it now and understand it later...

"If You Want Me To" -Ginny Owens

 

The pathway is broken
And The signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley
If You want me to

Chorus:
Cause I'm not who I was
When I took my first step
And I'm clinging to the promise You're not through with me yet
so if all of these trials bring me closer to you
Then I will walk through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone

 

So When the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley If You want me to


Gender Reveal Party!

We decided we wanted to throw a gender reveal party once we found out we were pregnant...since they're all the rage right now =) After telling them family mom said she and dad wanted to help...I think she was hoping I would tell her early what we were having! The hardest part was determining who we would invite..even just limiting to family could have potentially made for a huge party! All of Anthony's family lives here while all of my family either in North Carolina, Ohio, or California. We came to the conclusion to only have the grandparents-to-be and great grandparents-to-be come for the family and then we also invited a few close friends. I hated having to limit family, but there is just no cut-off point and we would have ended up having to book the fellowship hall at church!

The party was scheduled for Sunday the 16th at 2:30 in the afternoon. That gave Anthony and I 4 whole days to keep the secret between just the 2 of us =) it was nice, but hard at the same time!Everyone kept trying to get us to slip up and say "he" or "she" and it was actually much harder than I thought to keep from spilling the beans!! I kept saying "trust me,  it's just as hard to know and not say anything as it is for you not to know".

We originally wanted to have the party at our house, but once we started figuring up who all would there, we realized there was no way our little house would comfortably fit everyone. The party ended up being at my mom and dads and it worked out pretty well. Mom and dad rearranged some of the furniture so that everyone would have a place to sit, and I attempted to decorate a little. There was also WAY too much food..but that's alright we had leftovers for the next few days =) Rather then revealing with cake or cupcakes, we decided to reveal the gender with a box of balloons.

**A note to those of you who might plan on doing the balloon reveal or just need a large box: we asked a bunch of stores and dad ended up getting Academy Sports to save him 2 from one of their shipments. Anthony and I found out when we went to Party City to get balloons that they have a big cardboard dumpster that they throw tons of boxes (of all sizes) away in. The lady blowing up our balloons mentioned that the dollar store had a cardboard dumpster as well.**

Once everyone was finished eating and we fellowshiped for a bit, I shared the prayer quilt my Aunt Debbie had made for the baby and brought down during her and Uncle Mike's Labor Day weekend visit (I'll post a separate blog about that). Then of course mom shared a few things and made everyone cry, thanks mom! After that we all headed outside for the big reveal.

We gathered at the end of the driveway so mom and dad's big oak trees wouldn't get in the way and then proceeded to cut open the box....as soon as we opened it all of the BLUE balloons flew out and everyone cheered!! It was so fun to see everyone's reaction!! Pretty much everyone, minus a few friends and family, decided to head back home. The rest of us went back inside since it was hot and we shared the outfit we had bought to bring Baby B home in. We all just kind of hung out for a but and then decided it was time to clean up. I'm glad we ended up throwing the reveal party. I'm not sure I would do it with every child as it took some planning and getting ready for, but I'm glad we did it.

 

 

 

 

...Now, if we could just decide on a name!