Monday, September 23, 2013

1 month old!

silas today is your 1 month old birthday!  i can't believe a month has already passed.  you are chunking up now and looking so cute!  your brothers still seriously love you and can make me and you a little crazy with their overbearing love.  we are finally enjoying time with each other in the absence of doctor appointments.  you are communicating more and more with us.  your favorite place is the changing pad and you "talk" to us the most there.  you love to look at our faces and you always find the ceiling fan in each room we are in.  you are still breastfeeding like a champ and i am so happy that breastfeeding worked out with you (but man it is not for the faint of heart!).  your peeling skin is just about all gone and your hair is getting a little longer.  i am soaking up every detail of you because i know just how fleeting this time is!

Friday, September 20, 2013

another silas medical update

the last medical update on silas was about his appointment with the cardiologist and i think i mentioned there that we also had an appointment scheduled with a pediatric surgeon.  we were also referred there because of the risk of bowel malrotation that you so often see with situs inversus.

so we met with the surgeon last thursday.  john went with me and while we were waiting for the doctor to come in to the exam room, silas was getting hungry.  i breastfed him and because we are also supplementing with a little formula, john offered to feed silas a bottle.  well, while he was trying to burp him, silas had a HUGE blowout that went all over john's shorts.  and right then, the surgeon walked in!  john was amazing and had a great attitude about it and we were all laughing that silas definitely does not have a problem with making dirty diapers!

the surgeon was really sweet and thorough and went over all the different scenarios we might face with a child with situs inversus.  he first recommended that we have an upper GI test done to absolutely confirm what the abdominal ultrasound showed...that there truly is no malrotation.  the issue seemed to be that the small bowel was clearly on one side and the larger bowel on the other side.  if there was malrotation, he would need surgery.  the surgery would most likely be laprascopic and would involve a hospital stay for a day or two.  if there was no malrotation, he would err on the conservative side and not pursue surgery until a problem perhaps arose later in life.

so we scheduled the upper GI test for the following morning.  poor little guy had to drink a bottle of barium while they watched how it went through his bowels.  then they took three additional x-rays to make sure they had good pictures for the surgeon.  silas couldn't have anything to eat/drink for three hours prior to the test so that was a challenge to time his feeding in the night to make the last one as close to the three hour window as possible.  then he refused to drink the barium out of their bottle.  fortunately i had one of our bottles with us, so they transferred the barium to that and thankfully after some coaxing, he drank what was needed to get the x-rays.  it was tortuous for me to hear him scream as they held him down and still while doing the x-rays.

then the waiting game began.  i've always felt that silas was going to be okay, even though we needed to complete all these tests to make sure.  the cardiologist appointment was exactly what i expected and i just felt the same about this one too.

finally, on wednesday the surgeon called and gave me the news i was hoping to hear...he does NOT need surgery!  in fact, his bowels are in the position that the surgeon would put them in if he had needed surgery!  he went over again the importance of telling any medical professional that silas sees about his situs inversus because everything will be flipped.  this is particularly important before any test is performed of if he were to have appendicitis (since his appendix is on the left instead of the right).  he still runs a risk of a volvulus (a volvulus is a twisting of the intestine that can occur in childhood. it causes a blockage, and may cut off blood flow and damage part of the intestine).  the signs of this would be green vomit and/or a distended abdomen.  we know to take him immediately to the ER of the children's hospital if he has either of these symptoms.

the surgeon sounded confident that we are now educated enough to know if there is a real problem so he doesn't need to see us back until silas is a year old.  i think he just wants to follow up and check on things again when he is a little older.

we are so relieved and so thankful to have this part of the journey behind us.  i *think* from this point forward we will just have our regular baby checkup appointments, hooray!  he's been such a little trooper about it all but we are both ready to just hang out at home and rest and eat whenever we want and not worry about the timing of those things with appointments!

thanks for following his health issues and praying for us!  the Lord is good and we are thankful for His protection over silas' life!

happy birthday to my beloved (2 days late)

considering my sleep deprivation and life clearly not being about me, being 2 days late with this blog post doesn't seem that bad! my sweet husband didn't seem to mind one bit that the best i could do this year was a store-bought cheesecake and us singing happy birthday to him after dinner.

now next year...next year will be a different story...next year is a really BIG birthday that we must celebrate no matter the circumstances! can you guess how old he will be?

i shared "our story" on our old blog several years ago and thought it would be fun to repost it here on the new blog.  sharing our story and listening to the stories of others is one of my most favorite things!

so here's the story of john and jenn:

I met John through my college roommate Julie. John and Julie grew up together in their youth group. When we (Julie and I) would come home for a weekend, Julie would gather all of her friends from home too. So inevitably, I came to know several people that belonged to Julie's circle, John included. So we would see each other periodically, maybe 2-3 times a year for a couple of years, even when Julie moved to Tyler to attend a college there.

I remember the first time I met John. He was teaching at a Christian school where Julie's mom worked and so we went to see him in his classroom on a visit to Julie's mom. I found it quite comical. There were 3 girls in his room and he seemed totally uncomfortable and maybe intimidated by all of these women. I knew a little about John at this point. Julie valued his friendship and theology. He seemed very internal, maybe a little quiet, and definitely a thinker. I love boys like that. And he played guitar, a huge plus in my book.

I remember on another visit, we went to a baseball game and my other roommate Kendra made the comment that she could see John and I getting married. A totally off the cuff comment, especially since Kendra didn't really know John enough to make such a prediction. Nonetheless, I will admit it made John all the more attractive and mysterious to me.

One weekend, Heather C and I went to visit Julie in Tyler, along with Julie's friends Daniel, Heather and of course, John. We all crashed in Julie's one bedroom apartment and had a great time. Julie told me later that Heather told her on the way back home that John kept talking about me. Hmmmmm....

My dad and Julie had a funny relationship. They were bound to one another by their love for cut-off shorts and Dad sort of adopted Julie as his 3rd daughter. So when it came time for Julie to graduate college, my dad and I traveled to Tyler to see Julie graduate and attend a little celebration back at her apartment. This visit to Tyler confirmed my suspicions that John was interested in me. He had traveled there too and back at Julie's apartment, he would not leave me alone, totally giving me a hard time about everything, a true sign of love. Right in front of my dad!

So things went along like this for awhile. Julie moved back to the area and the 3 of us would meet at a coffee shop once a month maybe for a deep theological discussion (or should I say argument?) and some coffee. It was great! Oh, how I miss those days. Well, Julie had the nerve to go off and get engaged to a guy in Boston (Julie if you are reading this, I am just kidding!) so she quickly ditched us and it became just a John/Jennifer theological debate. Basically, John would beat me up with the Bible and I would take it! :) These were the best of times and the worst of times because John was leaving in January to attend Westminster Seminary in Philadelphia and I knew our days were numbered.

Now, let me take a break and make mention of this. I was a fiercely independent single girl and was content, for the most part, with that role in life. I was working full time, going to Seminary full time and leading worship for the youth group at my church. I lived out of my car. I had bags packed for each thing I did. I was super busy and loved every second of it. I had been wounded by a previous relationship and in many ways, was damaged goods. I had been so hurt emotionally (and this was 4 years prior) that I really struggled with trusting another person with my heart. John and I talked about this even in our coffee meetings.

So with that said, I didn't know what to think about John or about him leaving. I remember him calling on Christmas Day to see if I wanted to go see Lord of the Rings at the movies with him that night. Umm, duh, yes I wanted to go. We went to the 10pm show and I remember making my hand easily available to him in the movies so that if he wanted to hold my hand, he could do so. He didn't take the bait. We laugh about this now.

So, the time came for him to leave. 3 days before he was set to drive to Philly, we had a coffee date. After much consternation, I had written him a letter describing to the best of my ability how I felt about him. I also bought him a phone card so that if he wanted to call me, he could. But I was a chicken and only gave it to him at the end of our time together that night, with the explicit instructions to not open it until he got home. I was scared.

Well, the next day goes by and I don't hear from him. Not a good sign. The Lord was good to me though. He protected my heart. I was not in despair.

The next night, the night before he leaves town, my phone rings. It's him. Lord, help me. After some small talk, he gets right to the point. He drops the bomb. We are too much alike. It would never work. What??? In the same sentence he would say "I think about you all the time and want to call you" and "We are too much alike and it would never work." What was a girl to say? He just stomped my heart, my vulnerable heart into the ground, but I liked him too much to get mad. I don't remember how the conversation ended, but it did and I wondered if our friendship would ever be the same.

Well, I went on with life. I thought about him a lot, but I was so busy (the Lord's providence) that I just didn't have time to throw a pity party. 2 weeks go by and on a Sunday afternoon, the phone rings and it's him. We talked about Seminary and Philly and what life was like there. We talked for over an hour. He accused me of avoiding him and I explained that I was just extremely busy, in fact, I really needed to let him go so that I could finish reading for school before church that night. But he wouldn't get off the phone. And then finally, he worked up enough nerve....he was wrong. What!?!? He had dinner with a buddy there who was engaged and he was telling John how much he and this girl were alike and how things were great, etc. and suddenly John realized his "theology" was wrong. It was good to be alike, not bad.

So, he wanted to date.
From Philly.
Could this work?

That was in February 2002. Well, there were a few bumps along the road. He foolishly thought we should just talk 2 times a week on the phone. Silly boy! And then when I suggested he fly home for a weekend to see me, this was such a revelation to him. He had a lot to learn! This was actually the first time he had ever met my parents. Though by this point, unbeknownst to our parents, we had already talked marriage and when and what then.

So he met my parents in March and I scheduled a flight to Philly in April. Unbeknownst to me, John called and spoke with my dad while I was in class at Seminary one night to ask his permission to ask me to marry him. My dad's response: "Are you sure you want her?"

So in April, I flew to Philly, my first visit there. It was beautiful. My flight, of course, was delayed and I got in very late that Friday night. John came and picked me up the next morning and took me to this arboretum nearby. I didn't know it, but this was a planned visit. He was going to propose. He had his roommates, David and Tom, plant this little bag with the ring at the base of this huge tree and then from a distance watch to make sure no one came along to take it. As we walked up to this tree, they were instructed to leave so that we would have our private moment. Well, just getting into Philly the night before, I had no idea that John was about to propose. I knew he was going to propose (or at least I was pretty sure) that weekend but not so quickly. So as we come up on this little gift bag, the conversation went like this:

John: "Oh, look. I wonder what is in that bag?"
Jennifer: "John, that is not our bag, do not mess with it!"
John: "I just want to see what is inside." And as he opens it, he rips the little sticker that was holding it closed.
Jennifer: "Well, great! Now they (the rightful owner) will know you messed with it."

So CLUELESS!!! Well, once I see him pull out a ring box, John says my eyes got really big and sparkly and he asked me to marry him. It was magical.

Oh and I forgot to mention that it had been raining all morning and stopped just as we pulled up to park. It was April 18, a Saturday. Then, we did what most people do who just became engaged. We went to eat a philly cheese steak sandwich! Ha! And the funny thing....the guy sitting next to us at the bar of the deli turned to us and said, "I can tell you two are really in love." Isn't that crazy!?!?! We confessed that we had just gotten engaged. We did go out for a romantic dinner that night and then to NYC the next day. We met Julie (of all people!) at Redeemer Presbyterian Church. It was a great time there, mixed with some sadness, as we knew we would spend the majority of our engagement in different time zones.

But God was faithful and upheld us until our wedding day, January 11, 2003, just eleven months after John made that phone call to me from Philly.

John, you are the greatest gift outside of Jesus that the Lord has given me. And through you, the gift of our three sons. Thank you for changing your mind and calling me and loving me from that moment on.

I love you baby!

Monday, September 16, 2013

3 weeks old and baptism

silas you are 3 weeks old now.  you are looking around more and more and you love staring up at the ceiling fan.  you are just starting to coo some which totally melts my heart!  you are awake more and more and just when we think we have you figured out, you throw us for a loop and we are scratching our heads about eating, sleeping and burping.  you've been a real trooper through all your doctors appointments and your mama is SO ready to have that behind us!

yesterday you became a covenant child of our church as the rest of the family took our membership vows.  you were baptized by pastor kyle and spoken to by elder phil.  we were wondering how you would do and you did great!  you were awake and looking around at all the lights.  pastor kyle walked you around the congregation (which we love!) so that everyone who were vowing to pray for you would see your cute little face.  you weren't a huge fan of the water when it came to the actual baptizing but you didn't complain too loudly.

phil having us take our membership and baptism vows

pastor kyle walking silas around the congregation
going to get baptized

we are so thankful for our new church and the love of our Heavenly Father!

Saturday, September 7, 2013

communing members

i happen to think that these two guys are the cutest communing members at our church!  they met with the elders last sunday and answered some questions about Jesus and the Bible.  they were part nervous and part super excited to do it.  we had arranged for all of us to meet to join the church as members and also for burrito and noodle to become communing members not knowing then that silas would be born 2 days before.  the church graciously allowed me to stay home and interview via facetime on john's phone while he and the boys met at church with the elders.  so this past sunday was their first communion and they were beside themselves excited the night before.  it was so cute!  when we went forward to take communion for the first time as an official family of 5 i was holding back tears watching them take the bread and wine (in their case grape juice) with huge smiles on their faces.  i am so proud of the Godly little men they are growing up to be.  Praise God!

Friday, September 6, 2013

2 weeks old

so how did we celebrate silas' 2 weeks old birthday you ask?  with another doctor appointment!  this was just to our sweet pediatrician and i was curious to see how much he weighed now.  7 pounds 5 ounces!  hooray!  we're finally getting this little guy to gain some weight!

we also celebrated by giving him a bath tonight.  look at his sweet little face!

this was a huge improvement over his first bath, which was this past saturday.  this is what he thought of that!
totally not a fan and he let us know by pooping all over the place at the very end.  so much for getting clean, ha!  we figure this will make for a great story when he is older. :)

silas at 2 weeks you are still stealing our hearts.  your skin is still peeling but getting better.  we've settled into a feeding groove which makes your mom so happy.  you are a laid back baby and i think we are more laid back parents this time around.  you are more aware of your surroundings and you are staying awake for longer periods of time.  i swear you can see the ceiling fan because you are mesmerized by it.  your older brothers are ready for you to be awake more and eat less so they can play with you more...it is super sweet to see the love they have for you.  in fact, when noodle realized he missed going to a birthday party this past weekend, burrito said to him, "would you rather go to a party or have a baby brother?"  they both clearly felt like a baby brother was way better! :)  you are not a fan of the carseat and neither am i because you look way to tiny to be strapped all in there.  you love to sleep in your swing but we are going to work on sleeping in other places this week too.

we love you silas!

Thursday, September 5, 2013

cardiologist

so i thought i would write about our cardiologist appointment yesterday mainly because this helps me remember everything and also, there is so little on the web about situs inversus with levocardia (flipped organs except the heart is on the left) maybe some of this will help someone else.

so i've learned not to assume that medical people know what situs inversus means.  you would think if they are looking at the order from the pediatrician to perform an ekg and echocardiogram due to situs inversus and you didn't know what that term meant, you would look it up.  yea, don't assume that.  i've learned my lesson and will verbalize that from now on at every appointment.

so, first the nurse did an ekg on little man.  he did not like this part because she put a million little sticky things all over him and then had to rip them off when she was done.  she also took his blood pressure, temperature, weight and length.  because he was getting fussy and hungry, i fed him before they did the echocardiogram.  the tech doing this was clearly in the wrong profession or having a really bad day and i had to pray myself through her attitude towards my squirmy baby.  i mean, he is just 12 days old, what do you expect, for him to be perfectly still the entire time???  this took about 45 minutes then we were back in the patient room waiting for the cardiologist to take a look at those pictures.

i loved the cardiologist.  he was an older gentleman and very sweet and thorough.  he brought the above picture in to explain exactly what he saw on the echocardiogram.  i am a visual learner so this helped me SO much!

so the diagnosis was what i expected from the research i've been able to do online.  the main issue has to do with the inferior vena cava.  they call it an "interruption of the vena cava."  if you look at the bottom left of the picture, you can see where this vein enters the right atrium from the lower parts of the body.  this did not form in silas so instead that blood comes up through a vein that runs behind the liver (which is on his left because things are flipped) and behind the heart and enters the right atrium at the top instead of the bottom (azygous vein to the superior vena cava).  so the blood gets to where it is meant to go, just in a different way.

he also has a ventricular septal defect (VSD) that is about 2mm.  this is the circle noted in the middle of the picture.  lots of babies have this and because the heart still has a lot of growing to do, it usually closes on its own.  he could not hear it with his stethoscope and he said even if it doesn't close, which it may not, it is so small that it will not cause any problems.

he has a similar hole between the right and left atriums (patent foramen ovale) that will also likely close as his heart grows bigger.  again, this is something that should not cause any problems.

so we talked about the rarity of situs inversus and how he has only had one other patient similar to silas.  it is likely a genetic thing but there is still a lot they don't know about what causes it.  he said if we were to have more children our odds of seeing this again in another child are about 2% more than anyone else.  also, silas' kids may be more predisposed to having this as well but the odds for that are just about 5% more.  it is such a mystery to me how all of this happens and really makes me appreciate the extreme intricacies that the Lord has established in the human body.

so his long term heart prognosis is great.  the cardiologist recommended that we come back in 6 months for a follow up to check on the status of the defects and to see if they have closed.  we are SO thankful for a good heart report!