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