Hospital tours and MRI results

This past Tuesday Austin and I went to Salt Lake for an MRI of Little Guy's lung tissue, as well as take a tour the Labor/Delivery Ward at University Hospital and the NICU at Primary Children's Hospital. It was great talking with the doctors and nurses, and we each felt like we (and our son!) are in the best hands possible. Everyone we interacted with was extremely loving and compassionate, and kept reiterating that they want us to have a good experience. We also learned what exactly will happen right after Little Guy is born and how Austin can be involved in the process of getting him to the NICU. Thankfully, the NICU at Primary Children's is a really short walk over a sky bridge from the Labor/Delivery Ward at University Hospital. 

There's really so much I could say about our experience on Tuesday -- it was almost a day of information overload. The most intense part of our visit was seeing all the helpless, innocent babies in the NICU... it made everything so real. Modern medicine is a truly amazing thing, and I don't even want to begin to think what would have happened to our son if he was born a generation ago, but seeing all those babies hooked up to machines and IVs and breathing masks just broke my heart. There is such a special feeling in the NICU and I'm sure there are many, many angels tending to those sweet little babies.

This morning we received a call from my doctor at Maternal-Fetal Medicine with the results from the MRI. Everything we've seen thus far on the ultrasounds gave us a lot of confidence that things would be okay and the MRI would give us positive results -- prior to the MRI, even my doctor said she expected the results to give us pretty normal lung tissue volume measurements. Well, the MRI definitely threw us a curve ball. One of the first things my doctor saw from the results is that a significant amount of liver is in our son's chest, which is not at all what we were expecting. With left-sided hernias, the liver isn't an issue since that organ develops on the right side of the body. Since the liver is also taking up space in the chest, that means the hernia is much bigger than what we've been seeing on ultrasounds... probably spanning across the entire chest cavity. The liver isn't a very "forgiving" organ (in terms of squishy-ness), so it really prevents the lung from fighting back and growing. With the liver being in the chest, that greatly affects survival rate and lung growth. That being said, the MRI wasn't able to detect any lung tissue on the right side and very little on the left side. At this stage in development, the average healthy baby has 70 cm of lung tissue total (35 cm per lung), and our son has 10 cm total on just the left side.

After surgery, once everything that shouldn't be in the chest is back in the stomach, his lungs can grow to full size. Since MRIs aren't able to detect everything, my doctor is really hoping that a small amount of lung tissue has developed on his right side, so the lung can continue growing after he's born. The real worry now is if he has enough lung tissue to make it to surgery. With all this new information, we were told his chance of survival is about 10%.

Needless to say, its been a very emotional day. During this phone call with my doctor, she reminded me that one big blessing is that fact that Little Guy's heart is just fine. Yes, his heart is pushed all the way over to the right, but it has no holes or other defects. If he had a heart defect, then everything would be much, much more complicated. She also told me that in her fifteen years working in this profession she's seen many miracles -- even though this isn't at all what we were expecting, she reminded us that we shouldn't give up hope. One definite plus of living in a highly religious area is having doctors who believe in hope, faith, and miracles. I truly do believe in miracles -- I know they happen every day, whether great or small. Austin and I are just going to keep going with the mindset that everything will be okay. I know that if I give up my hope, my emotional (and mental) sanity is the next thing to go.

Throughout this experience of uncertainty and emotional roller-coasters, we're so grateful that we already have a sweet little girl in our family. Arlee adds so much joy to our lives each and every day! She's absolutely perfect and we cannot imagine our lives without her laughter, silliness, and love. I'm so glad we have her to hug and cherish, especially on days like today. After getting off the phone with my doctor and seeing me in tears, she ran over and said, "Mommy sad!", and then gave me a great big hug. I love Arlee so much and count my lucky stars that I get to be her Mommy.

I know the Lord hears my prayers and knows exactly what I am feeling at this time. And, I'm so grateful for the faith I have in my Savior and His Atonement. No matter what happens, I know everything happens for a reason. We're so thankful for our family and friends, and all the people who've been praying for us and checking up on how things are going. We feel so blessed to have such a wonderful network of support.

Bring on the good news!

Whew, I am THE WORST blogger! Sorry everybody, I know an update is long overdue.

Well, we've been hearing lots and lots of good news -- its been such a relief! :)

I took a blood test long before we knew anything about Little Guy's development, which screened me for my chances of having a baby with a chromosomal disorder (i.e., Down's Syndrome, Trisomy 18, Spinabifida, etc.), and the results came back so positively that the doctors and genetic counselor are pretty certain that Little Guy's diaphragmatic hernia wasn't caused by a larger and more concerning problem. (Wow, long sentence.) This was just a screening, not a definite "yes or no" process, but with the results we were given, the chances are super super low. There's the option to take additional screening blood tests, but with the highly positive results we've already seen, both the doctors and genetic counselors said we'd probably see the same results. Additionally, we found out that since we've had one baby diagnosed with this hernia, our chances of having another baby with the same issue is about 2%, which is still super low and likely that it won't happen again. Since this isn't related to a chromosomal or genetic disorder, its just one of those things that happens for no apparent reason -- most a likely a weird combination of environmental factors meeting biological factors.

A few weeks ago I also had the opportunity to meet with a pediatric cardiologist, who did a thorough examination of Little Guy's heart. With any birth defect, and especially diaphragmatic hernias, since the heart is pushed to the side, there's the concern that the heart could be affected and not develop properly. Well, after a long ultrasound with a tech who wasn't saying much, we found out that his heart is developing just great! All the valves are present and working and there aren't any holes. Another huge sigh of relief! :) I know that the ultrasound techs/cardiologist techs are only allowed to say that the doctor will discuss the results after the exam, but the long periods of silence or avoiding question is really nerve-racking. The cardiologist mentioned that even though he only focuses on the heart and isn't certified to make diagnosis on other parts of the body, he did notice that there was space where the lungs should be. Yayyy for space!

After much deliberation and prayer, Austin and I have decided that we'd like to have a MRI done of Little Guy's lungs. The MRI will measure lung tissue volume and give us a much better understanding of his chance of survival. No matter how great ultrasound machines are these days, they can't detect everything -- like lung tissue growth, especially if the stomach or small intestines are blocking the view of the lungs during one of my routine exams. The MRI will also give the doctors and surgeons a much better understanding of how to proceed once Little Guy makes his debut. At my last ultrasound appoint a few weeks ago, the doctor was able to see part of the right lung but the view of the left lung was obscured by the stomach. Just hearing, "Ohh, I see part of the right lung!" was enough to lessen some of my fears. With all the positive news we've been hearing from our doctors so far, we're just hoping and praying that we hear more good news from this MRI in a few weeks.

Little Guy is continuing to grow really, really well. He's a little over a week ahead of where I am gestationally, so he's going to be a big boy. :) He's incredibly active and loves keeping me up at night. Last night he kicked me so hard that I thought he was going to kick a hole through my stomach. I see a little soccer player in my future. :) He hates any and all pressure put on my belly, whether its gently leaning against the counter, holding his sister, or even folding my arms, which he then makes known by karate-chopping me super hard wherever the pressure is currently focused. He definitely likes his space, which is growing ever smaller. Its crazy to imagine that he'll be here in about 7 weeks! Where has the time gone??

We've really started to feel at peace with this whole situation. The last eleven weeks have definitely been an emotional roller coaster, with more tears shed and more prayers said than I can remember in such a time period. But we've started to reach the point where we realize that worrying about him nonstop really won't fix anything...all we can do it pray for the best and prepare as much as we can. We have a bed and little dresser for him, and we're just going to keep preparing for his arrival as we would any other healthy baby. I'm so grateful for the peace that the gospel of Jesus Christ brings, and my knowledge that if something were to happen and he returned to his Heavenly Home, I know I'd see him again and will be able to raise him one day. I honestly don't know what I would do or how I would feel if it wasn't for my knowledge of the Plan of Salvation and my Heavenly Father's plan for all His children.

Once again, thank you for all your prayers and asking about him -- it means so much to us to have such wonderful and supportive family and friends. I'm also so grateful for all my many, many babysitters! With all the doctor appointments, sometimes 3-4 in one week, I'm so thankful that I have many kind friends who don't mind watching a busy and adorable toddler. I cannot even begin to imagine what it would be like to bring my curious little fireball to all these doctor appointments, especially the appointments where big machines are involved.

We love you all!

Isn't that the cutest little profile you've ever seen! We think so. :)