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

Where has the time gone?

I can't believe as I am writing this, my little boy is almost four months old! I am so smitten with our little man that I will choose playing with him in lieu of writing a blog every time. However, someday I will regret that I did not put these times into words at least periodically. Ryan and I watch J and know he's learning something, it's so miraculous. It's so funny but so true that everything your child does is cute, I just can't get enough! I think we take for granted all the skills acquired in our lifetime. J loves people talking to him and his bottles! He is becoming such a chunk (though I am not at all surprised about this). The caregivers at his daycare were telling me that though he is behind in the physical milestones (rolling over) he is one of the more interactive babies. I guess Ryan and I never expected to create a Michael Jordan, ha!

On that note, J started daycare at the beginning of this month and I feel like every day I have to hold in the tears leaving him there. It's like I'm leaving a piece of me behind and I don't get it back until we meet again in the evening. It has gotten a little easier as I have gotten to know the "teachers" better and see how much J likes them. However, I still can't help but feel a little guilty about it. I think it's ten times harder on me than J. I don't think I would ever want to quit working completely but having a lighter schedule would be nice. Unfortunately, that is not an option for me at this point. I am so thankful that I have my dream job but just have to find a better balance.

It's strange thinking back on my last blog and how much has changed even since then. The first few weeks postpartum were kind of difficult on me. I have never had any problems with feeling sad or depressed but that was the closest I've gotten to it. I was surprised as I never anticipated that happening. Literally everything made me want to cry. I was so in love with my little boy yet so exhausted and overwhelmed. I was celebrating the birth of my child but mourning the baby in my belly, the person who had lived within me for nine months. It is not logical and I am embarrassed to admit it, but that's honestly how I felt. My head understood that the baby that was inside me was J but my heart still felt like something had been ripped from it. Birth is such a traumatic separation that it's almost scary not feeling the baby move inside anymore. I was even having phantom baby movements. I can't explain it any better than that, it was just strange. However, that feeling soon subsided so maybe it was just the hormones. Now, I can't even imagine being anything but thankful for everything God has blessed us with. I am starting the most important role of my life, being a mommy, and wow is it a great ride! I can't wait to see what kind of little man J blossoms into. Nothing has ever felt more real or significant. 

Love, Raquel

J's Birth Story

My pregnancy had been going smooth and I had been feeling great. However, my doctor was concerned because of slow weight gain and that I was measuring three weeks behind where I should be at my 36-week appointment. Because of this, my doctor decided to get a growth scan to make sure baby was growing OK. R and I went to the ultrasound thinking everything would be fine and we’d go to work afterwards. During the ultrasound my heart began racing when I saw the baby's head measuring in the 40^th percentile and abdomen 15^th percentile, estimated to weigh only 5 pounds 3 ounces at this time. This is called asymmetric growth and typically means that the placenta is no longer functioning as well as it should. The ultrasound technician told us she didn’t want us to leave until she talked to a physician and I overheard the doctor say “bed rest”. How on earth am I going to go on bed rest?? I have to work! That is honestly the first thing that crossed my mind, I feel bad about that now. Since my doctor wasn’t at the clinic where my ultrasound was, R and I had to drive to go see my doctor and she confirmed what I thought, that she wanted me to quit working and go on bed rest to help the perfusion of the baby from the placenta. I agreed as she said this was the best thing for the baby, how could I argue with that? She told me she wanted me to get to 39 weeks so that the baby could grow a bit before he was born and so we scheduled an induction.

            R's mom, offered to come take care of me and help around the house while I was on bed rest. It didn’t even cross my mind at first that I may need more help but let me tell you, she made life much better once she came. I felt like my stomach was in knots those entire two and a half weeks. All I could think about was how much the baby was moving and praying that he was going to be OK. I was trying to stay positive but inside felt that at any moment I could break down. In my profession, I know all too well what things CAN happen. It is a curse to know too much sometimes. C and I spent a lot of time on our iPads playing Monopoly and Scrabble and just enjoying each other’s company, which was distracting (in a good way). I know I was not in my most fun mood and was very tired during that time. C, I love you so much for coming and taking care of Ryan, baby and me those weeks! I feel very fortunate to have such an amazing inherited family along with my own that supports us so much.

            Each day of bed rest passed uneventfully and baby boy passed every non-stress test and biophysical profile, which was reassuring. Though some of us thought I might go into labor on my own, it never happened. My induction date came and I was ready to go in to have the baby! I had to go in the night before the induction to get some medicine to prepare my body for labor, as this was my first baby. I slept well that night because they monitored the baby all night and as the nurses kept telling me he was “very happy” (good heart rate) which was reassuring.

Last pregnancy photo - 39 weeks

The next morning at 6 am after only four hours of sleep the nurses woke me up to start getting the medicine to start labor. My mom had driven to Kansas City the night before and got to the hospital about 9 that morning and I was SO thankful to have her there. You are never too old to need your mom. She even braided my hair! The morning passed slowly. I was having contractions but they were not painful, just uncomfortable, but they were not changing my cervix. My doctor came to check on me about 1:30 in the afternoon and decided it was time to break my water. I knew there was no turning back at that point so I was excited that this was actually going to happen. Holy cow did that get things moving very quickly after that!

The contractions got closer together and progressively more painful. I would describe the pain as a violent twisting of the lower abdomen that radiates to your back and literally stops you from breathing or thinking about anything else but getting through the pain. It was different than I thought, though. I’m not sure why but I was trying to hold off on getting the epidural for a while. I told my mom I wanted to know what it felt like to be in real labor, stupid I know. However, I only lasted 1.5 hours of what I thought was “real” labor before I decided to get the epidural. I had gone from 2 cm to 5 cm in those 1.5 hours of time so things were moving quickly. I was amazed at how incredibly supportive Ryan was through the whole thing. He is not a medical person so I thought he would be less involved than he was. He even stayed in the room and supported me when I was getting my epidural. I have to admit that was probably traumatizing to him, I was getting the labor shakes, having contractions every minute and a half, and getting a large needle into my spine. After that he looked pale and excused himself for some fresh air! Poor guy, I was feeling SO much better at that point though.

Things were much calmer after that, I felt my mom and Ryan relax and I was able to rest. Unfortunately, around 6:00 pm I slowly started feeling contractions on my left side again, the epidural was wearing out. They brought the anesthesiologist back to give me more medicine but that did no good. Wow, did those contractions hurt! When my nurse told me that I was probably going to push this baby out without a working epidural I was terrified. The pain was so bad and I couldn’t imagine trying to push at the same time. However, I somehow garnered the strength to push through the contractions with the sole goal of seeing and holding my baby boy. Things were moving so quickly once I started pushing that the nurses were concerned my doctor wasn’t going to make it for the delivery. I think my mom and Ryan were concerned my nurse was going to deliver the baby. I didn’t care at that point who delivered the baby as long as he came soon! Surprisingly, pushing eased the pain of the contractions. At our birthing class, our instructor told us that for each contraction, the first and second pushes get the baby moving but the third push gets the baby OUT! For my fellow high school basketball teammates, guess what I was thinking about? Running Streaks!! These were sprints we used to run during basketball practice and the third streak was always the most difficult but we all ran the hardest during that one, hence why it came to my mind. 

Apparently it worked because I pushed only 17 minutes and at 7:22 pm, J R came screaming into this World a healthy 6 pounds 8 ounces, 19 inches long, with Apgar scores of 8 and 9. I cannot describe the flood of emotions the moment I saw him for the first time. All I could think about was how he was handsome like his Daddy. My heart was exploding with love for my little boy and my husband. I could not stop crying tears of joy. The anxiety and relief was pouring out of me! I think I knew how much I would love J but I did not know how overwhelming that love would be. It is definitely a moment I will never forget. He is the most beautiful baby (of course I think that)! Even looking at him now at two weeks old I cannot help but get choked up about how beautiful and what an amazing miracle he is. I don’t know how we got so lucky to be blessed with such a wonderful Gift, but I am forever grateful. God is good! 

J R, after his 1st bath

33 weeks

I wanted to share some pictures of my baby shower that Tessa took. She did such an awesome job. I don't have the jpeg's yet so I'll share the link to the Shutterfly site she posted them to. Thank you for taking pictures, Tessa! My mom and sister threw me an absolutely beautiful baby shower a few weeks ago in Minneapolis. It meant so much that so many people came, I felt so loved! The baby got so many wonderful things and will be very well dressed. Savannah, you are one of the most amazing people in my life and love you so much for doing something so special for me and your future nephew. We read the book you gave him and I know he's going to adore you as much as I do. We are so lucky to have you, you are the best twin sister in the whole World! I can't thank everyone for all the gifts! The link to the pictures:

http://raquelsbabyshower.shutterfly.com/

We have been having such a beautiful Spring, so spoiled! Ryan and I have been spending lots of time spring cleaning and preparing for baby. We are only seven weeks away (or so) from the arrival of our little bundle. I am already kind of panicking that everything will not be ready. My mom was telling me that I may have to let go of my particularities once this baby comes. I know it's true but I've just gotten so used to things be a certain way that I get anxiety thinking things won't be exactly how I plan them to be. I've gotten a bit anal retentive with age... I blame Kacie!! She increased my standard of living when we lived together in college and now I like things as neat as she kept them :) It's a blessing and a curse at the same time that I am that way. However, I do realize I have to let some things go... but what? Clean dishes? Organization? TV? That's it! I want to fully enjoy and soak in every moment with my little one so I intend to have as much prepared beforehand so I can soak them all in. Naive of me??

We are also getting worried that we have not picked out a name for our little guy. We like a lot of names, but love none. We had a name for a little girl, of course. We don't want a common name yet want it to be classic and not too weird. Those criteria make it difficult! I'm sure we will settle on something soon??

Our little guy has been moving a ton lately! I have felt these rhythmic pulses at times and have now realized he's hiccuping, so cute. We almost have his bedroom completely prepared, just a few finishing touches left. Ryan is refinishing a dresser for him we bought off Craigslist so we'll have a place to put all his cute clothes. I will share pictures on my next blog. Until then here is a teaser. Notice the painting on the wall? My little sister Peyton made that for us. It is so perfect, she is such a talented young lady. We love it Peyton, thank you! My mom and Peyton also made those blocks. They are made up of different pictures I drew when I was little, signatures of grandparents from old birthday cards, and even a picture of Ryan as a baby that says, "my daddy, my hero". They are so precious and fit perfectly in the room. My drawings are not nearly as well done as Peyton's though :)

The baby has turned head down which means he's getting ready (I guess), ahh! I can't wait to meet him. Everything is going perfectly according to my doctor. I pray everyday the delivery goes well and he comes out healthy, my biggest concern of all. I'm sure everyone is sick of hearing it but I still feel great! My doctor was surprised when she felt my feet and I have absolutely no swelling yet. I still have a little trouble sleeping but by no means am I sleep deprived. I count my blessings.

33 weeks

Love ♥

Raquel

3rd Trimester!

We have made it to the third trimester! I can't even believe it. I am getting excited/nervous/anxious all at the same time. I just can't wait to meet our new little bundle of joy. He has a personality already. He loves Daddy reading him books and doesn't like Mommy vacuuming! So far I haven't experienced the dreaded third trimester symptoms of pregnancy. I feel awesome (truly), though I do move a bit slower :) I had an appointment yesterday and baby is measuring perfectly, though apparently I am not gaining enough weight. My doctor told me to tell Ryan that he needs to start feeding me more, never thought I would hear that in my lifetime!! She did say that as long as I'm measuring on track though she's not overly concerned about it yet. I told her I have 12 weeks to catch up! I also had my glucose test and all I have to say about that is people are good at complaining, I thought the juice was actually pretty good! Don't know the results yet though...

I was also going to update you on the level II ultrasound we had. They still saw the spot on baby's heart but he had no other markers for Downs syndrome and the perinatologist said she is not concerned. She said either Ryan or I could have had the same thing as babies but it went unnoticed because they didn't do ultrasounds then. It eased our minds a lot! She said it will have no effect on his future heart functioning. We have a healthy (little) guy, he's in the 40th percentile for height and weight according to the ultrasound measurements. God is good!

I haven't meant to turn my blog into a pregnancy update blog but we really haven't been doing anything too exciting lately. Ryan started taking MBA classes two nights a week and I've been keeping really busy at work so we have been pretty boring. He is enjoying it so far but I think he's realizing how big of a commitment it is going to be! I'm proud of him for setting his mind on something and doing it, even though it means I see him two fewer nights a week :(

We are getting pretty excited to head up to Minnesota in a few weeks for Joey's Jawas Type I diabetes walk at the Mall of America and my baby shower. Hope everyone is surviving the frigid winter, wait a minute, has winter even come yet??

27 weeks

Love ♥
Raquel

Dear baby,

Dear baby J,

My task for this week was to write you a letter. It may seem early for me to write you, but I already have such strong feelings I want to share. Every time I feel you move inside my love for you grows, I cannot explain the feeling. You are already becoming your own person and I cannot wait to meet you. I have dreamed of you for a long time and I am so thankful God felt your dad and I were worthy of such an amazing gift. Speaking of your daddy, you are one lucky little guy! He is so excited to show you the World and will love you to pieces. As our love grows for you, so does our love for each other.

My hopes and dreams for you are simple. All I want for you is to be a healthy, respectful man and do whatever makes you happy. I will do whatever I can to make all your dreams come true and support you no matter what. No matter how old you are, you will always be my baby. We will have a lot to learn together as I have never done this before. I know I will make mistakes but promise to give you my all. You have me for life.

Love,

Your Mommy

Week 22

I cannot believe we are already at 22 weeks! Up until this point I have had a pretty good pregnancy. I can't say I love being pregnant but I can't complain either. If it weren't for the heartburn, fatigue, nausea, achy back, and general discomfort I would feel like normal! Now that I have started to feel those kicks and bumps it has become more real to me. The past week I've begun to experience the joy of "tossing and turing" at night. I have never experienced this before, usually I sleep like a baby all night long. When I got up this morning I was trying to negotiate with the baby, telling him I know he is running out of space but if we could just compromise it would be great :) I don't think that's going to work... poor thing is already low on space the way it is! I also thought I would share the obligatory pregnancy photos... I tried to give you a before and after. You should be thankful I'm sharing a frumpy photo of myself :)

12 weeks

22 weeks

We had our 20 week ultrasound before Christmas and found out we are having a (but you can't tell my dad!!)....

BOY!!

We are very excited about a little boy, hopefully we are able to keep up with him. Ryan is already talking about bringing him home in a Packer jersey. I shot that one down pretty quickly. Not to worry everyone but we also found out at the ultrasound that our little one has a white spot in his left ventricle. Apparently it isn't anything to stress over but we have to take a closer look at a level II ultrasound in a week or so. I am a bit nervous but it sounds like a common finding that they just need to look into further to make sure everything is 100% OK. Apparently it typically resolves by the third trimester. Everything else, including the rest of the heart, looked normal otherwise but keep us in your prayers until then. We'll love him no matter what. I will make sure to keep you updated. Hope everyone had a wonderful holiday and New year.

♥,

Raquel