Blessed

My heart swells with joy.  The days... hours... minutes... since Caleb was born have been incredible.  I am so thankful to be mommy to two beautiful boys.  The whole ordeal with the fluid on Caleb's lungs feels like a dream, a long lost memory.  It's so surreal.  It's nothing more than a miracle that he is sitting here in my arms at this very minute, a perfectly healthy baby boy.  I told Ryan that I feel like I am in a constant state of euphoria. I really can't explain it… I've never had this feeling before. Don't get me wrong, I had an enormous and beautiful connection with Jonah when he was a baby, but somehow this time it's different. I think everything we went through in the pregnancy has made me more raw, more real.  I look into the eyes of both my children, and see the work of God. These beautiful creatures that came from nothing are here... living, breathing.  I will never take that for granted.  One of my favorite movie quotes (and the inspiration to the title of my blog) is "I would rather have thirty minutes of wonderful, than a lifetime of nothing special."  This even has more meaning to me now that I am a mother. No matter what trials I may face in my lifetime, I know I am a blessed woman and saved by the Grace of God.  

Introducing Caleb James

We made the date for induction.  Ryan's mom got here in the knick of time for us to go into the hospital.  We are so thankful for her coming to take care of Jonah, who loves her dearly.  He didn't even care that mommy and daddy were leaving; he kept asking, "you going to hospital?  Bu bye!"  I was really hoping to go into labor on my own this time but the desire to see and hold my baby overpowered this.

They had us go in the night before for the Cervidil.  I had to do this with Jonah and slept through the night, didn't notice a thing.  This time the medicine was giving me light contractions every 5-7 minutes making it kind of difficult to sleep.  I went from being dilated to 1 cm and 30% effaced to 1-2 cm and 75% effaced overnight.  It seemed like it was going to be a long day but the doctor was happy with the progress and decided to start the Pitocin.  From 8 in the morning to 2 in the afternoon all this did was make the contractions I had been having during the night a little more intense and consistent.  However, I could still talk myself through them.  As I had said that I would probably want an epidural I got the feeling the staff wanted me to have it earlier than later but I kept telling them the contractions were not painful enough to justify not being able to get up and walk around!  After Ryan's third Starbuck's coffee, we were kind of wondering where everyone was.  Well, we found out later that that day was the busiest delivery day they had ever had.  I guess the laboring woman with light contractions was low priority over the emergency C sections.

The doctor finally came in at 2:30 and said I was dilated to 3-4 and 100% effaced.  He said Caleb was still high in my pelvis but decided to break my water to get things going and guess what came out?  Caleb's toy in the womb, the shunt he pulled out 18 weeks prior!  It is much larger, yet softer than I imagined.  Almost like a small, pliable straw.  After, almost exactly like with Jonah my contractions went from tolerable to unbearable in a matter of minutes.  I could no longer talk through them and they were coming every 2 minutes and lasting 60 seconds.  This went on for maybe 30-35 minutes before I decided it was time for the epidural.  I know I'm a wimp.  I honestly don't know how women go through contractions like that for hours on end... I know I could have done it but felt no need to torture myself :)  Ryan stayed through most of me getting my epidural but did have to excuse himself right at the end.  The thing he didn't realize is that I was in pain because of the contractions, NOT the epidural.  That was nothing comparatively.  It is so amazing how instant the pain relief is.  The remainder of my labor I rested and watched Sex and the City.  By 4:30 I was fully dilated but my nurse talked me into "laboring down" as long as my epidural was still working to get him further down into my pelvis and keep me from pushing for a long period of time.  The doctor came back at 6:15 and was ready to get going.  At this point I was getting excited and nervous.  I was reassured as the whole day Caleb's heart rate had been tolerating labor very well and had no concerns with him the whole time.  My doctor had me start pushing at 6:28 and he was out and born screaming by 6:33 pm on September 29, 2014.  That sound is the most beautiful one a mother will ever hear.  All I could do was cry tears of joy and tell him how much we loved and waited for him.  The NICU staff soon after took him away to do a thorough check.  We were initially told he weighed 8 lbs 13 oz (and believed this throughout the next week).  However, due to concern for his weight gain and inconsistency in his documented birth weight we got it confirmed that he only weighed 8 lbs 1 oz at birth, they had just converted the grams to pounds incorrectly the night he was born, geesh!

The rest of our stay at the hospital was kind of a frustrating experience.  First, they kept him in the NICU for four days because they were worried he was dehydrated (hence, the NG tube in his nose to get formula supplementation).  Honestly, aren't all newborns a little dehydrated??  They also wanted to monitor him to make sure the fluid did not reaccumulate after starting feedings.  By the grace of God, the fluid never came back.  We also confirmed that the second shunt is completely inside his chest cavity so he will have to have this surgically removed when he is about 6 months old.  The most amazing thing?  Caleb has no scars from the procedure.  I wish someone had told us that babies who have procedures in the womb don't scar, it would have saved me some angst.  It was also a frustrating experience because the labor and delivery floor was so busy (and had so many women who had C sections) that we had to move rooms.  We went from having a beautiful room with windows and comfy beds to a dingy closet with a very uncomfortable double bed and no windows.  In the end the most important thing was cuddling our little man so we didn't spend much time in there anyway.

One week after Caleb's birth the fog has lifted.  I haven't felt like myself since April!  Ever since the day we heard Caleb had a large pleural effusion and a 50% chance of survival to birth our life has been consumed with worry, anxiety, and fear.  Fear of the unknown, especially when it comes to your children is crippling.  Ryan and I were talking the week before he was born about how this whole summer felt like we were constantly waiting for something, we just didn't know what it was.  With Jonah, we were able to get ourselves excited and prepare for him.  It wasn't until they laid this precious screaming baby boy in my arms that I embraced being a mommy for a second time.  My family knows all too well about the loss of a child.  I can't imagine anything more difficult.  Caleb is truly our little miracle.  I intend to spend the rest of my life being thankful to God for the time we have with him and his brother Jonah.

As the hospital had visitor restrictions due to the weird respiratory virus going around, Jonah was not able to come visit Caleb in the hospital.  I was kind of nervous to bring him home and in fact still get teary eyed thinking about my little Jonah.  I just want him to know that though we have this very new baby in our family, he still has a very important role in our family.  The minute we brought Caleb through our front door, Jonah was there waiting for him, wanting to give him hugs and kisses and kept saying "he's cute".  Caleb brought Jonah a car toy, which was a big hit.  I'm so proud of that little guy.  I think our problem so far has been that he wants to hug and kiss Caleb all the time but does not quite understand "gentle" yet.  I pray their relationship blossoms into something beautiful and strong over time.

So sorry for the really long blog.  If you have called and I have not returned your call it's just that I have been enjoying my boys and time with them.  Thank you all for the support and prayers.  We could not have made it through this without all of it.

Love,
Ryan, Raquel, Jonah and Caleb

Prayer requests:
1)  We continue to adjust to our life as a family of 4
2)  Caleb continues to thrive
3)  We can try to get back to some "normalcy" and be always thankful for our little miracle.

At the end - DUE DATE!

I have not been the best about updating, I know.  The thing is, things have been going very well for Caleb and mostly uneventful since the fluid resolved.  Last week we had a blood pressure scare on my end but it checked out OK after an hour of observation and I was just told to take it easy, but boy is that hard to do with a toddler, full time job, and husband who works full time and is taking business courses.  The discussion the past few weeks has been whether or not to induce me or not.  There has been much debate between the doctors.  My doctor has felt that as long as Caleb is doing OK that we can try to wait it out for him to come on his own.  However, after the appointment on Wednesday he feels we have given him all the "cooking" he needs and that the risks of waiting for him much longer to come on his own just aren't worth it.  I was checked and am currently "unfavorable" for induction.  I have been having quite a few Braxton-Hicks contractions so I was a little surprised by this, but what can you do?  We have decided to give him through the weekend to try to come on his own and give my body time to get better prepared for delivery.  The emotions have been piquing again for me this week.  I'm scared what happens once he is delivered.  He seems OK on ultrasound, but will the lung that was collapsed for a period be well developed?  What will the scars from having two shunts shoved into his chest look like?  What will this sweet precious little baby we have waited so long to meet look like?  I feel I have not been able to fully accept yet that I'm having another baby.  My grandma and mom got us some new newborn and 0-3 month sleepers for Caleb and I about broke down crying just putting them in the closet.  I realized I have not let myself get excited for him, I'm just so scared of losing him.  Even with him doing better it's still a fear I can't shake.  I have realized though that the worrying will never stop for any of my children, even when they are 30 years old.  The love you is all-encompassing and unconditional.  What has gotten me through is all the support from family and putting my complete trust and faith in our Creator.

I have to say that this has been a very relaxing summer overall, though.  Ryan, Jonah and I have spent a lot of quality time together.  We even managed to get him potty trained!  It was a long and somewhat painful process, but thank goodness we got it done.  I can't imagine trying to do that with a newborn.  We are so proud of him.  I am also nervous how the adjustment will be for Jonah once Caleb is here and I don't doubt there will be some jealousy issues.  We just have to make it a point to let Jonah know that he is still very much an important part of our family, even though his role may change a little bit, or a lot.  So hard being the oldest :)  It's also kind of a bummer because Jonah is not allowed in the hospital that I am delivering due to the summer virus going around.  So, their introduction will have to be once we get home from the hospital.

This is a belly photo of me from this week.  I am much larger than I was with Jonah!  Caleb was estimated to weigh 8 lbs 2 oz a few days ago by ultrasound so we will see how accurate that is.   I think he will be in the 8 lb range, but really don't think I have a 9 pounder in there.

Prayer requests:
1.  We have a smooth and relatively pain-free delivery.
2.  Caleb comes out screaming and requires no interventions.
3.  Jonah takes on his role as big brother with ease
4.  Peace and loads of love for my brother Joey

Love,
Ryan and Raquel

Waiting - 31 weeks

Sorry it has been so long since my last update.  Since the fluid has resolved, we have had weekly appointments with not many updates, the fluid has stayed away.  As my doctor says, I'm getting to be one of his boring patients.  Thank heavens!  Every week we have a general ultrasound to assess the lungs, other organ development, and blood flow through the placenta and umbilical cord.  Along with this we have also started getting weekly biophysical profiles (BPPs) which assess a baby's risk of stillbirth.  It is a ten-point scoring system, getting two points for each measure; a score of eight is passing.  The things measured by ultrasound are amniotic fluid levels, fetal tone, fetal movement, and fetal breathing.  The fifth component is a non-stress test where they look at the variability of the baby's heartbeat for 15-30 minutes.  However, if all the ultrasound measures are seen, you already have a score of eight and don't have to do the non-stress test.  So far, Caleb has been passing his BPPs without having to do the non-stress test.  His breathing movements take longer to get but my doctor said this is normal at this stage.  Once I get to 36 weeks, they will get more concerned if it takes too long to see the breathing movements.

We are hanging in there and overall doing much better.  The days still drag on slowly, though.  As my doctor says, we should be very happy the fluid is gone right now but we still don't have a good answer for "why" this happened in the first place.  We may not know until he is born and the doctors can take a closer look at him, or maybe we will never know!  Oddly, right now that is the least of my worries.  I just want to get through this pregnancy as close to term as possible.  Jonah prays every night that baby Caleb is "safe and keeps growing".  I don't think the growing is a problem, Caleb is 3 lbs 14 oz at 31 weeks (65th percentile)... much different than his big brother!  I have also been generally more fatigued and uncomfortable this pregnancy than with Jonah, and earlier.  I'm sure having a two year old to keep up with doesn't help either.  The most stressful part is my doctor told me to call him immediately if I don't feel ten movements in EVERY two hour period.  As a working mom, this is overwhelming as I am often busy and don't think about how many movements I've felt.  I'm lucky that Caleb remains very active so I haven't had any moments yet where I felt I needed to go in.   Once I get concerned, I usually will sit down and he goes nuts.

We also have done almost nothing to get ready for Caleb.  I'm not sure if its because we're more laid back this time or the worry of his health prevents us from preparing.  I have been singing and reading to Caleb and feel more attached as the days go on.  I'm sure we will start pulling out all of Jonah's baby clothes in the coming weeks.  We had thought about moving Jonah from his crib to a toddler bed but just aren't sure if we are ready to deal with him exploring at all hours of the night, yet anyway :)

Cindy just spent a week with us as Ryan was gone on business to help around the house and help with Jonah.  It was so nice to have her company around and have home cooked meals everyday!  This week Jonah is spending time with my family up in MN.  Ryan and I miss him dearly, but know it is really good for him to have this time.  It has also given us some time to get things done around the house that have been sitting for a while.

Love,
Ryan and Raquel

Prayer requests:
1)  The fluid remains to stay away and Caleb continues to thrive and grow
2)  Jonah has a wonderful time in MN and makes it home safe
3)  Ryan and I continue to grow in our relationship with each other and our role as parents during an uncertain time

Such a cute little face!

Family picture we took for Jonah's 2 year pics, I was 19 weeks here.  I will post a baby bump picture next time, we have not been good about this!  THANK YOU THANK YOU Sarah Maxey for taking such amazing photos for us!

Love him!

Caleb relaxing!

Hopeful - 25 weeks

I apologize for the late update. We had another ultrasound on Wednesday again. We had good news last week which actually made going to this appointment even more nerve-wracking, at least for me. To our amazement, the fluid around Caleb's lung is gone and his lung is now completely expanded. They weren't sure but there was maybe a small amount of fluid around his heart now. However, my doctor felt it wasn't real and it's just something we need to watch and not worry about right now. We also had an "integrated consult" where all the specialties that we may require services from come together and get the parents and medical team on the same page. We had a neonatal surgeon present as Caleb has one of the shunts in his chest cavity which will most likely have to be removed once he is born. This is an uncommon procedure, with only two cases ever reported. This surgeon was wonderful, calling our son by his name, and explained to us that in his opinion, the fluid most likely accumulated later on in the pregnancy (after 8 weeks) because his lung looked completely developed based on the most recent ultrasound. If the fluid stays away, he and the neonatologist feel that lung will suffer no ill-effects once Caleb is born and gets older. It was a much more positive visit than the initial one I had with the other neonatologist. He also discussed that if we decide to have it removed, the surgery wouldn't happen until he is 4-6 months old. My doctor again wanted to stress that though this is fantastic news, he has seen the fluid re-accumulate and we still need to monitor Caleb closely, most likely on a weekly basis until I deliver.

To Ryan and I, this has been the most amazing blessing and we cannot praise God enough. We were so worried about doing the procedure when Caleb was so little and would not do very well outside the womb had it put me into labor or broken my water. Once babies reach 27 weeks, they do much better if/when they are born. I don't know if it's a result of our recent news or part of the acceptance process but I'm at a new place. Instead of worrying about all the what ifs, I am now focused on today. Every little kick and moment I get with this precious little boy is a gift, and I plan to cherish every one of them. I have also noticed I have been much more patient with Jonah and been more present with him, and he has been better behaved because of it. Ryan and I put our phones away, we have dinner at the table every night and talk, and make time for daily family prayer. It's a very peaceful place.

We cannot thank everyone enough for all the prayers, love and support. We are sad we have not seen many of you in so long. Originally, the plan was to go up north this summer to spend time with everyone but in our current state, traveling that far is just not the best idea. We are doing our best to enjoy the summer here in Kansas City (albeit much hotter than up north)!

 Love,
 Ryan and Raquel

 Prayer requests
 1) Caleb continues to thrive and the fluid stays away!
 2) We continue to be patient with Jonah, each other, and this whole process in general.
 3) We will not require any more procedures!

Rollercoaster

It has been roughly five weeks since we discovered this thing with Caleb, and the whole thing has felt like a giant rollercoaster, a rollercoaster of emotions and events.  

Going in this past Monday, as my doctor had been gone the week before, we weren't sure what to prepare for.  I came in knowing it was possible they would do another procedure.  Again, the fluid was stable.  My doctor said he wanted to go ahead and schedule another shunt procedure as the other one had already fell out.  However, now that Caleb is considered "viable", meaning he has some chance of surviving outside the womb (although not the best odds at this point), my doctor wanted me to do a series of steroid shots prior to this to help develop his lungs better in the event the procedure broke my water or put me into labor.  He also wanted me to consult with neonatology and get another fetal echocardiogram to make sure his heart was still functioning well.  

The visit with neonatology was overwhelming to say the least.  I was so incredibly frustrated with this doctor.  I know he was just trying to give me the spectrum of what could happen once Caleb is born, but he was not helping.  Essentially, because this condition is so rare, they don't know how Caleb will do once he is born.  He started talking about some rare conditions I hadn't even heard of before that could be causing this and if that were the case we would probably have to put Caleb on comfort measures only once he is born.  It was hard to hear this as right now all we've been thinking about is getting through the pregnancy without much thought to what happens after he is born.  But on the other hand, he said he could be born completely healthy.  I'm not sure why this doctor started spewing out rare conditions that Caleb could have so early on.  It's difficult to grapple with such unknown outcomes.  Right now, Ryan and I are trying to take it one day at a time to give our little boy the best chance he has and not worry about the worst-case scenarios until we are faced with them.    The fetal cardiologist visit was hopeful in that she felt his heart function has remained stable the past four weeks and besides being shifted over was very healthy.  I also got the steroid shots, a glucose tolerance test as the steroids can mess this test up, and hemoglobin check.  

We went in Wednesday morning again preparing to have the shunt put in again.  They always bring me for an ultrasound prior to see if baby is positioned correctly.  Honestly we couldn't believe what we saw.  The fluid had dramatically improved!  The heart was almost in the correct position, a mere 5 degrees off kilter.  I think my doctor looked at the chest cavity from 15 different angles because I don't think he believed it, but there was no denying that the fluid was much better.  In fact, there was very little fluid there at all.  My doctor is unsure of why this happened but some of his hypotheses are that the shunt in Caleb's chest cavity navigated out and started draining, a fistula has formed from the initial procedure (physiologic "hole" from the needle), it is resolving on its own, or somehow the steroids are doing something to improve the fluid.  We also cannot discount all the prayers we have had going out for our baby Caleb.  Some things cannot be explained by science.  We may never know what exactly is going on but for now we are so very thankful!  With that little amount of fluid there was no reason to do any procedure that day and my doctor wants to see me back in a week.  He wanted us to be happy/excited but we could tell he wanted us to be cautiously so as we don't know what could happen next, it is just so unpredictable.  He said the fluid could still come back and we need to be prepared for that.  Regardless, we got another week without having to do interventions with both of Caleb's lungs expanded, allowing them to develop.  At this point in my pregnancy (24 weeks), a week is a big deal.

We are so very thankful for all the prayers and hope they keep going out for our little guy.   I think Caleb was just as happy about the news as we were, a little smile.

I also want to wish my husband Ryan a very happy Father's Day.  We love you so much and you have kept us together through this whole thing.  You are such a wonderful man and are so lucky to have you!  Also happy father's day to my dad, Patrick, step-dad, Tony, father-in-law, Tim, grandpa's, Jim, Curt, Manuel, and Danny and Ryan's grandpa, Norman!  We miss you all very much.

In unrelated news, we got to participate in the dragon boat races this Saturday with my residency group as well.  Ryan took my place on the boat and we actually got 3rd place, it was a fun time and got our minds off everything (Ryan is the second rower on the left).  We also decided to hire a house cleaner and came home to an immaculate house on Friday, I don't think I'll ever go back.  Cleaning is so overrated!  In all seriousness with everything going on, the last thing we wanted to spend our free time doing is cleaning the house so its nice to have one less thing on our plates.

Love always,

Ryan and Raquel

Prayer requests:

1)  The fluid has remained stable the past week and we don't have to pursue interventions.

2)  Caleb continues to grow strong and healthy

3)  We can continue to take each day at a time and continue to put our faith in the One who strengthens us

Disappointed

We waited a whole week to see how the shunt was working.  We were so happy that we had gotten through it without any complications and had the ultrasound on Tuesday to see the progress.  One of the shunts was still in the same place (most of it in the chest cavity, the one we knew was not working) and the other one was unfortunately floating around in the fluid.  We watched as Caleb slowly moved his hand towards it and pick it up and wave it at us.  He was literally playing with the other shunt.  Now we don't know for sure, but we are assuming he pulled it out himself.  I didn't know whether to laugh or cry.  It's so nice to see such an active little guy but so disappointing that the shunt didn't stay in.  Also the fluid was almost exactly what it had been before, so we don't know if there was ANY benefit.

The good thing is that, again, the fluid is stable and is not progressing.  I had another ultrasound today and again, things are stable.  My doctor is out of town this week so we had his partner seeing us.  This doctor told us that most babies with this condition are more sick, less curious, less active, and are less likely to "play" with the shunt; however, Caleb is very healthy otherwise.  We are so incredibly thankful that he is doing so well, but do wish he would just leave the shunt alone.  Every day the fluid is there is another day his lung is not developing properly.  The next step is to attempt to put the shunt in one more time... I can get through it!  If Caleb pulls it out again, the doctor said the benefits of doing the procedure no longer outweigh the risks and we have to move to plan B.  Plan B probably being serial drainages of the fluid with a smaller needle, maybe even twice a week.  The purpose of having the shunt in is continuous drainage of the fluid.  However, if the shunt only stays in for days (or even hours) there is no benefit.  If we could get it to stay in place for a few weeks, the doctor said that it would start to scar down and it would be much more difficult for Caleb to pull out at that point.  We have another appointment on Monday morning with the potential of placing the shunt again, depending on positioning.

This has been one of the most mentally exhausting things I have ever went through.  The past four weeks have drug by.  I am constantly waiting for something, but I honestly don't know what I'm waiting for.  It is very strange.  Ryan and I make a concerted effort to take our minds off of everything, but it is almost impossible.  We are so sad that the shunt did not work as this gives our little man the best chance.

Jonah has kept us sane.  I love that little boy so incredibly much.  He knows Mommy has "Baby Caleb" in her tummy and to be gentle with Mommy.  He has even started to sing "Jesus Loves Me" to my tummy, it's so moving how aware he is.  We are planning to bring him to the Thomas the train exhibit this weekend.

Thank you all again for your support.




















Another picture of Caleb, this was right after he took his foot out of his mouth.  What are we going to do with this wild man?


















Jonah and Ryan in Branson for Ryan's 30th birthday.   It was very nice and relaxing.  We even got to see a production of "Jonah", the bible story.  Jonah liked it right up until Jonah gets swallowed by the whale and then it was too scary and wanted nothing to do with it afterwards :)

Love,
Ryan and Raquel

Prayer requests:
1)  If we have another shunt placed next week that Caleb can let it be!
2)  Give us the strength to get through this time together as a family and be stronger because of it.
3)  Put all our trust in Him, who lifts us up.
4)  Caleb stays strong, active, and otherwise healthy

Shunt placement

Well after much waiting we finally got the shunt placed, though not without lots of anxiety.  We went in yesterday (Tuesday morning) thinking we were going to have it put in then.  However, baby Caleb was in the absolute worst positioning, even after hours of trying to get him to move, the doctor did not want to risk injuring other parts to get to his chest wall, which I completely agreed with.   So we went in again this morning and low and behold he was in the perfect spot.  Honestly, I had prepared myself to go to work this morning thinking he wouldn't be in the right position again, so I was taken a bit off guard.  I had to get prepped for the operating room, get an IV placed, etc to decrease the risk of infection and other things.  Caleb was very active this morning before we went to the OR and every time I felt him move I would feel like I was about to start crying.  I just feel so bad to be putting my 1 pound baby through such a traumatic experience.  Ryan saw me off and as they were wheeling me to the OR I was crying uncontrollably.  I have had surgery before but it is a completely different experience knowing it is being done on your child and even more weird when that child is in your belly.  I was so scared of all the dreaded "complications" they discussed with this procedure.  I got to the OR and the anesthesiologist gave me some medicine and suddenly I was relaxed and instead of crying said the "Our Father" over and over again until it was over.

The pain of the procedure was nothing for me.  Unfortunately, the first attempt of putting the shunt in did not work.  Apparently they have to "pigtail" the catheter on each side once they get it in so it doesn't come out and this part of the procedure didn't work the first time.  This may or may not have to be removed after Caleb is born, depending on where it ends up.  They then attempted to put in another shunt, this time with success and great positioning.  We will not know for a while whether the shunt is actually doing any good or not.  My next appointment isn't until Tuesday next week so a whole lot more waiting.   In the meantime, as they put a large needle into the amniotic sac, I am at risk of preterm rupture of membranes, probably for about the next five days or so, so will be taking it easy and was advised to not travel or do any heavy lifting.  Our doctor said the reason they are not seeing me earlier is there is nothing they would do in the meantime to intervene at this point.  Starting week 23/24 is when the plan kind of changes as Caleb would technically be big enough to potentially survive outside the womb.   After they put the shunt in Caleb was doing well and has been very active since.

Thank you everyone for all the well wishes, texts, messages, prayers, and phone calls letting us know you are pulling for our little man.

Love,
Ryan and Raquel

I also want to give a big shout out to my little sister Peyton who is graduating from high school this weekend.  We are devastated we cannot make it there to celebrate all your amazing accomplishments with you.  We are so very proud of you and love you to pieces.  Congratulations, my sweet Peyton.

Prayer requests:
1)  The shunt works and Caleb keeps growing strong
2)  No other complications happen (water breaking, infection, etc)
3)  Ryan and I can relax this weekend and reflect on the past three weeks

Caleb James

If you are reading this for the first time, you may want to start at the beginning.

We have decided on baby boy Jahnke #2's name, Caleb James.  This time we didn't have a list of 20 names to go through.  We saw the name Caleb and learned it's meaning and we knew it was the one.  In the bible, Caleb was one of the ones chosen by God to spy on the promised land, and he was forever faithful.  No matter what obstacles or "giants" he faced, he wholeheartedly followed God.  He followed God for 40 years before God "gave him the mountain".  The name spoke to us as we have to wholeheartedly put our faith in God at such a difficult and scary point in our lives, for our family and our unborn baby boy's sake.  We have to have faith that our precious Caleb is in the hands of the Lord and that He will not leave us.  If anyone has a better knowledge of Caleb, please share, I'd love to hear it.  James is in honor of both of my grandfathers, who I admire, respect, and love dearly.

Another good 3D image of baby Caleb's face, he is so cute!

Our appointment on Monday went as it had before.  The fluid has fully re-accumulated to what it was in the beginning, with no signs of hydrops (heart failure) or other problems.  Caleb is so active he had actually flipped himself from head down to breech in a matter of four days!  Our doctor discussed with us that we are at a very sensitive time point right now.  Essentially we want to have the shunt placed two weeks before hydrops develops (if it ever does), which is unpredictable.  He decided to hold off on draining the fluid again as Caleb is doing well otherwise and to reduce the amount of times they have to put needles into the amniotic sac (risk of infection and preterm labor).  He is worried about doing the procedure at this point in my pregnancy because if there were complications, though only a 2% risk, there is nothing they could do to save the baby.  If we waited a few more weeks, we would have more options if things go awry but we also don't want to risk developing hydrops before then.  Our doctor is planning to consult with the expert on this disease via Skype who is in Denver to discuss my case and get his ideas on the next steps.  I have told Ryan, I do not want to be a doctor in this situation.  The only perk is I feel like I understand what is going on.  Whatever decision they make we have to trust they are making it in Caleb and my best interest.  I just don't want this decision burden on Ryan and I.  We have a great respect already for our doctor and trust the decisions he makes.  Tentatively, we are scheduled to have the shunt placed on Monday morning, depending on what this doctor in Denver thinks.  They will place a needle into the amniotic sac and "thread" the catheter through and place it in the side of the baby's chest with the hope that the fluid will go into the amniotic fluid instead (thoracoamniotic shunt).  I will be sedated for the procedure which I am actually glad, it's way too scary to watch the whole thing.

You may be wondering, how are we doing?  We are generally more somber but are trying to keep our normalcy for Jonah's sake.  We have had a few moments full of sadness and fear, but I don't think it would be normal if we didn't.  We just love Caleb so much already and want him to be healthy and not suffer and it's difficult knowing that it may not end up that way.  In the end, thinking about all the "what if's" and buts doesn't do any of us any good.  Regardless of the statistics, we have to have hope that things will be OK and trust in God, there is no other way for us.

I also want to wish Ryan a very happy 30th birthday.  I feel bad that this momentous time was not as special as it should have been because of what has been going on.  However, Ryan is a wonderful man and was not bothered by this at all (he went to bed at 8:30 the last night of his 20's, I don't think he was too concerned).  All he wanted for his birthday was to spend it with Jonah and me relaxing with a steak dinner on the grill.  I can definitely handle that.  We are also going to Branson this weekend to celebrate which we have had planned for several months.  We figure since there's nothing we can do to change the circumstances or do from home, we may as well get away.  Ryan's parents are joining us so we are really looking forward to spending time with them.

We wish everyone a happy and blessed Memorial Day.

With love,
Ryan and Raquel

Prayer requests:
1)  That we can wholeheartedly trust in God during this time as a family
2)  Baby Caleb continues to thrive
3)  If we have the shunt placed, that the procedure goes well without complications

Quick update

We just wanted to post a quick update of the appointment today.

Fetal echocardiogram:  The baby's heart is anatomically normal and has strong cardiac output meaning it is not showing signs of heart failure at this point, praise the Lord!

Follow up appointment with the maternal fetal medicine (MFM) doctor:  The fluid has returned, almost completely to what it was prior to the thoracentesis.  :( We were hopeful that the fluid wouldn't re-accumulate so fast but were prepared to hear these results.  For some good news, the baby's chromosomes look normal, no viral infection was found, and the fluid building up is for sure lymphatic fluid (chyle); all of which are good things.

Again, what do we do now?  The MFM doctor wants us to try the thoracentesis again next Monday as in some cases the fluid will not re-accumulate after the second try.  The reason we did not do it today was to give baby boy some time to recover from having the procedure on Monday.  He said that having that pressure/fluid shift in such a rapid amount of time can put strain on someone and best give him time to recover before we put him through that again.  One thing he mentioned about looking ahead is if the fluid re-accumulates after the second procedure we may have to consider moving to putting in a shunt.  However, he is cautious to rush attempting this procedure given the fact that baby boy has one perfectly healthy lung and though his heart is pushed to the side, it is functioning very well.  The shunt will fall/come out or even get pulled out by the baby 30% of the time so often this has to be repeated as well.  Currently I am only 20/21 weeks along.  The doctor said if anything were to progress or get worse prior to 28 weeks there is not much they could do aside from placing a shunt, so we are in for a very long 7 weeks.  Please pray our little boy continues to stay strong and active over this time.

We are thankful that our baby boy has stayed healthy up until this point.  We even got to see him sucking on his hand during the ultrasound.  Though I would prefer it the other way, it is nice to see him on a regular basis; it's almost like he knows we are looking at him and is communicating back to us.  So far he is not very photogenic, though.

Sorry again if we did not call all of you personally.  Ryan and I have found we have spent so much time calling and explaining all of this to everyone else that we have barely had any time (the two of us) to sit down and discuss it ourselves.  We are trying to stay patient with each other and keep peace around the house for Jonah's sake.

Again, we will update as things happen.

Sincerely,
Ryan and Raquel

Good thoracentesis results

We went in for our second consultation with a perinatologist at the Children's hospital today.   Overall, the vibe Ryan and I felt with this doctor was a complete difference from the last one.  Even though I am a physician myself, I do not want to be talked to as a physician, but a mother.  The doctor today talked to Ryan and I about our baby, not "the fetus", he held my hand and told us he was going to do everything in his power to help our baby, and he did not sugar coat the facts and risks.  Plus, he threw in some much needed and appropriate humor from time to time which in my book can never be a bad thing.  He explained in further detail that pleural effusions in the neonate can either be primary or secondary, with primary causes having a much better prognosis.  Right now all signs are pointing to the fact that this is a primary cause; however, in order to rule out the other entities (infection, genetic disorder, etc), testing has to be done.  The doctor today felt that the thoracentesis (drawing fluid off the chest) was not an emergent procedure, but that it did need to be done fairly soon.  So we decided today was as good as any.  I was so scared going into the procedure thinking of all the things that could go wrong, but more scared of what could happen if we don't do anything.

Ryan decided that he did not want to be present during the procedure as he has a bit of a needle phobia and did not want the concern to be on him during such a delicate procedure.  Luckily, I was able to have Savannah there with me holding my hand the entire time.  As happy as I am that baby boy is very active, it made it a bit difficult to stick the needle into his chest in the right spot when he is just under one pound which made mommy so nervous she had to close her eyes.  However, the doctor was able to get the needle in and drew off around 20 mL of fluid from the baby's chest (which is quite a bit in such a small baby).  When they were done the ultrasound technician quickly went to image his heart and it was beating strongly and I broke down in tears (so did Savannah).  The heart had immediately shifted back to a more normal position (not completely but much better) and the lung inflated.  Though they were not able to get all of the fluid off it was much improved.  Medicine is so amazing.  The doctor said that poor baby boy was a bit shocked right away but went right back to his normal activities immediately after.  

So what's next?  We are getting a fetal echocardiogram (imaging of the baby's heart by a pediatric cardiologist) to completely rule out heart abnormalities on Wednesday as well as a follow up ultrasound to see if the fluid is re-accumulating, decreasing, or staying the same.  While the doctor was doing the procedure he also pulled off some amniotic fluid to do chromosome and viral testing on so we should have those preliminary results as well.

Overall, today I am relieved.  I realized too how important it is to me that this baby growing in my belly be considered my baby, because he is and always will be.  Seeing his little fingers and toes and face makes me love him even more.  I am so thankful he is strong (80th percentile in size).  I am most thankful and overwhelmed by all the support we have received from everyone. 

Thank you Mom and Savannah for being here the past few days and helping take care of Jonah and everything around the house.  It has been a very peaceful and thoughtful time and I love you both so much.  We are just sad you have to leave tomorrow.

Love,

Ryan and Raquel

Here is a 3D picture the ultrasound tech took of the baby for us.  You can see his face and ears and his hand is covering his mouth.

Prayer requests:
1)  The fluid accumulation in the chest decreases further or stays the same by the next appointment
2)  No heart or chromosome abnormalities are detected

Baby Jahnke #2

This Wednesday at my 20 week routine ultrasound and appointment Ryan and I learned we were having another precious baby boy.  We are so excited that Jonah is going to have a little brother.  Jonah had told us that from the beginning, guess he knew something we didn't.  About 40 minutes later my OB (who has never been late to an appointment) came into the exam room shaking and said, "I'm so sorry to tell you this, but something is very wrong with your baby."  She began to explain that he has a large pleural effusion (fluid around the lung space) that has collapsed his lung and displaced his heart so much they couldn't even get a good image of the heart anatomy.  She referred us to a perinatology appointment for the next morning who confirmed the same thing my OB told us the day before.  They were able to image the heart that they believe looked completely normal.  They did note a small mitral valve abnormality, but thought it may be because of the pressure on the heart and not a true defect.  The doctor believes that because everything else looks healthy that this is not due to a genetic/chromosomal disorder but probably due to a maldevelopment of the thoracic duct causing chyle (lymph fluid) to leak and accumulate in the lung space, though we can't be 100% sure (and may never be).  Some good news is that the effusion is isolated to only one lung and he has not developed hydrops (fluid around other portions of the body), both of these things increase mortality significantly.  Some bad things are that I'm so early in my pregnancy that he couldn't survive outside the womb, he could develop hydrops if we don't intervene soon, and the effusion is so large it is displacing the heart and could cause him to go into heart failure.  What does all this mean?  The perinatologist told us to hope for the best but prepare for the worst.  The statistics?  Babies diagnosed with this condition prior to 32 weeks have a 40-45% survival rate.  If treated, the chances can increase but the treatments aren't without their own risk.  This is a rare condition with only 1 in 10,000 to 15,000 babies diagnosed per year.  In my mind this means not many physicians are familiar with the best way of treating it.  

The next steps?  We are getting a second opinion from another perinatologist at the large children's hospital in Kansas City on Monday morning.  We believe we will have to have a procedure (intrauterine thoracentesis) to remove the fluid within the next week to allow baby's lungs to develop and prevent heart failure/hydrops, it's more of a matter who will be doing the procedure and when.  The problem is 90% of the time, the fluid re-accumulates within days after this procedure.  If this is the case we may have to consider placing a shunt in the chest that will remain there through the remainder to the pregnancy, but this is a more high risk procedure.  

It took me a while to process what was going on, I'm still not sure if I've processed it yet.  Though I knew going into the appointment there was a chance of bad news, nothing can ever prepare you to hear it.   We are just so scared for our precious baby boy.  Right now he is getting oxygen from me, so this is not bothering him whatsoever, which is a comfort.  However, if that lung does not develop there could be severe consequences once he is born.   Baby boy is very active at this point which his mommy is very thankful for!  I appreciate the support of everyone.  If we have not told you in person, it's not that we don't want to talk about it or for you to know.  It is simply too difficult to talk about over and over again.  We will keep you updated on the appointment on Monday.

Above is the sonogram of our precious baby boy.  We think he looks a lot like Jonah already.  The large black space to the left of the picture is the effusion (fluid) around the lung and white ball at the top is his poor little collapsed lung.  We are working on his name and may share once we decide.  Below is a picture of our sweet little Jonah.  Thank God for him.  I think he has picked up on the sadness through the house as he has been very polite and is giving extra long hugs.  

Prayer requests:

1) At the appointment on Monday they do not find any further fluid accumulations or hydrops.

2) We can determine the best course of action and get the procedure done as soon as possible.

With love, 

Ryan and Raquel