"I've Got Him"

It has been nearly 4 months since we said goodbye to our sweet Noah. Those 4 months have brought some healing along with the difficult days. Despite the pain we've went through, I've found ways to be thankful.

I was having a pretty hard day on Mother's Day this year. It just didn't feel right that I couldn't spend it with all 3 of my children. I was sitting in bed, looking at pictures of Noah, and crying... I started praying, asking God to heal my broken heart. I overwhelmingly felt him tell me, "I've got him." That's it. That is exactly what I needed. The Maker of the Universe.... He's got him. Noah is WITH him. In his presence, Forever. If I can't raise him up, there's no better place for him.

Last week, I received a call from one of Noah's main doctors and he spent 30 minutes going over the autopsy report. There were no big surprises.... and to me, it seemed like it was a miracle that he did have 27 days with us. They found that his lungs were underdeveloped and small, due to the lack of amniotic fluid early on in the pregnancy. His liver was 6-7X bigger than it should have been, and a portion of it had died due to everything going on. His kidneys were not formed properly and weren't working very efficiently. The fluid was likely coming in through a layer in the abdominal wall, but no for sure answers as to why... probably a combination of everything else going on. His bladder was very enlarged, as well as the ureters. Most of these things we already knew. But hearing and then reading it all in the report just made me realize how very sick he was. When we learned of the complications during the pregnancy, I thought that once he was born the doctors would fix everything and all would be well. I had a lot of hope for that. That obviously didn't pan out... it wasn't God's plan.

I remember a few years back hearing of a friend who had an early miscarriage, and I though to myself.... "What a terrible thing to have to go through, but wouldn't it be something to have a child waiting to meet you when you arrived in Heaven?" I felt kind of guilty for having that thought, but now I believe that God was preparing me.

Rejoice always, pray without ceasing, give thanks in all circumstances, for this is the will of God in Christ Jesus for you. 1 Thessalonians 5:16-18

Count it all joy, my brothers, when you meet trials of various kinds, for you know the testing of your faith produces steadfastness. James 1:2-3

It has taken awhile to learn to be thankful for what happened with Noah. Scripture tells me to be thankful and to count my trials as joy. That probably seems crazy to some... but it has truly brought me healing.

Things I'm Thankful For
-27 Days with Noah. God wanted us to know him.
-Full Healing. He doesn't have to live a life with numerous complications/pain.
-The Promise that we will be together again. This life is a vapor.
-The incredible amount of love and support from our family and friends. Truly grateful.
-Noah has helped others grow closer to Jesus. I have received several letters from people telling me the impact he has had on their lives... How it has made them stop and think about how short life is and to remember what is important. One person told me how it really helped their family who has gone through numerous miscarriages. Another wrote that she really stopped and refocused her life on Jesus.

If the pain we endured in losing Noah has brought others to God, then being separated for this short time will be worth it. God told me, "I've got him." That has brought me a tremendous amount of peace. The God who made us all, who made the earth and heavens, who made the light and dark and everything in between.... He's got him. And I'm thankful.

Saying Goodbye... For now.

I've been thinking about writing this all down for awhile now. It is really hard to go back and tell this, but I want to write while I still remember. So... here it goes.

Saying Goodbye to Noah....

The doctors in the NICU were having a very hard time figuring out what exactly was going on with Noah since the beginning. He would have a few stable days, and then have a bad day with low blood pressure that had to be corrected with multiple medications. This cycle happened for several weeks. A dye test was done on 3/11 to try to figure out where the fluid was moving, and it came back with no answers. Docs decided to let his belly fill up with fluid to see what would happen. They tested the fluid again, and knew it was not urine or lymphatic fluid. Still didn't answer what it was. When his blood pressure would drop, his urine output would go down... indicating his kidney's weren't getting enough blood to function properly. So they would increase meds and replacement fluids... and he would be stable for a few days. And then repeat.

On March 16th, I finally got to hold my sweet boy in my arms. My heart was so full. Ben got to hold him the next day, and had him for 6 hour straight! The doctors and nurses thought it might be a record :) He also received his first tube feed with my milk that day, on 3/17. Sadly, the milk started sitting in his stomach and not digesting after the first day, so they had to stop feeds.

I posted this on 3/19- Didn't get to hold Noah today because his blood pressure was acting up again... So we held hands instead😃
He got a good amount of extra fluid today to try to help his blood pressure, so the docs are going to be doing an EKG soon to make sure his heart isn't working too hard with the extra fluid. There was more fluid leaking from the omphaloce site yesterday and today, so the surgeons came by and added some more glue. It seems to be helping. His feeds were stopped last night when there was 16ml of residual milk sitting in his stomach undigested... So he got a suppository and had his first little poopy! Not sure when the feeds will start again... Hopefully soon. Overall, an ok day. Praying for more progress!

On Friday 3/20, I received the worst news of my life. Ben had gone home, and was on his way back down. I headed to Noah's room first thing in the morning. The nurse had told me that the fluid leak was picking up. Dr. G came in and sat down next to me. I could tell from his face that he didn't have good news for me. He started telling me that there wasn't anything more they could do for Noah. I just couldn't believe it. I kept asking questions.... what about this? what about that? what changed? He basically said that the fluid leak was not stopping and they didn't know how to stop it. He told me they could try surgery again, but it would be risky. So I asked to talk to one of the surgeons. One came in soon after... and as she sat down, her eyes started filling with tears. And so did mine. She told me that since there was so much fluid in his abdomen, it would be difficult to go in and fix the patch that was leaking. She also told me that this wouldn't fix the problem... which was the continual accumulation of fluid that wasn't stopping. She was crying, and telling me how sorry she was that they couldn't help. At this point, I was a wreck. I called Ben... barely able to talk. He said he would be there soon. Not long after, Ben's mom Amy came with the kids. It was wonderful to see them, but I was still a mess. Ben arrived not long after. My parents were on their way to Florida, but canceled their trip and came. Most of our family was together.

We were able to let all of the Grandparents hold Noah, which was great. Pastor Chris and his wife, Doree, came down to visit us as well. We did a little Dedication ceremony which was really powerful, knowing that Noah was going to be with the Lord soon. There was also a photographer in the room that night taking photos of our family (they turned out great, such a treasure to have). After all of the family had their time, it was just Ben and I in the room. I was holding Noah... and he was wide awake and staring at us. We were crying out to God... asking him to tell us what to do. It just seemed so wrong to let him go.... So we didn't. We decided that we wanted a couple more days... to spend with him and to see if anything would change. Ben left to go get some air, and I was holding Noah in the room, just the two of us. One of the nurse practitioners came in and sat down next to me, and we talked for at least a half hour. She told me that she could see the light of Jesus shining through our family, and that we had made a major impact on many of the staff members there. She said that her Bible Study group had been praying for him, and that really touched my heart. She said, "Some people live to be 100 and don't have the same impact that little Noah has had in his short time with us." Wow. I'll never, ever forget that.

On Saturday, the weekend doctors came on. The attending physician said that his best guess to the fluid issue was that it was coming from the perineum layer in the abdomen that has a lot of capilaries, but he didn't know what would cause them to leak fluid. He did tons of research with the other doctors, and they only found 5 cases with babies with Beckwith-Wiedemann and Prune Belly... and of those, none had the fluid issue. He said that we could try lasix to see if that would do anything... it may have bought more time to see if the fluid leak would stop on it's own. The kidney specialist told us that lasix could damage his kidneys... but what option did we have? So they started them, and it didn't really do anything. His oxygen needs had been increasing as well, and one of his lungs collapsed. This was probably due to the tube moving down a little bit, so the respiratory therapist adjusted it. He was very heavily relying on the respirator though. The surgeon came in who did Noah's first surgery and sat down with us. She said that she could go in again and fix the patch... but again, it wouldn't fix the big problem. Plus, any surgery is risky. So, we spent the day enjoying every precious moment with Noah. On Sunday, we did the same thing. Took turns holding him, reading to him, and telling him how much we love him.

On Monday 3/23, our regular doctors were back on. It was nice to see them again... since they were the main ones taking care of Noah. They sat with us, and cried with us. On this day, we knew it was time to let Noah go home to Jesus. It was time for him to receive his full healing. They explained everything to us very thoroughly, and answered any questions we had. I was holding Noah, and Ben was right close with us. They slowly took his meds off, one at a time, and backed off on his vent settings. They removed the breathing tube, and our precious boy went from my arms to Jesus's arms. My heart was shattered into a million pieces. 

As we left the hospital a few hours later, I felt like I was just walking away from him. I was a complete mess the whole way from his room to the car. Sobbing.... I felt like I was just leaving my baby forever.... even though I knew he was in the most glorious place, and that I would see him again. 

The ONLY thing that has pulled me through this is the incredible, steadfast love of Jesus. He has given me more strength than I knew was possible. When I felt like my whole world was crashing down, he was right there holding me up the whole time. His Word promises me over and over that I will see Noah again, as long as I have Jesus in my heart. His Word also tells us about Heaven and how perfect it is. Noah experiences no pain, no sorrow, no tears... in a place more beautiful than we could ever imagine. He has changed me. I now can share my faith with others so much easier. It is really easy for me to talk about Noah and where he is. Before, I would sometimes feel like a hypocrite who wasn't all that worthy when I was trying to share the gospel. Sure, I'm still a hypocrite at times, but who isn't? That's why we need a savior. I also have a more eternal perspective on life. I've always believed that our lives here on Earth are short in the scope of eternity. Things on this Earth don't matter all that much... what matters here is how we love God and love People. After that, eternity is a pretty long time. 

Noah has taught me a lot about God's will. While I prayed and begged God to heal Noah here on Earth, I always had a hard time adding, "if it's in your will." I wanted God's will to match mine. But obviously that didn't happen... which pointed me straight to Jesus praying before he was crucified. In Luke 22, Jesus prays, "Father, if you are willing, remove this cup from me. Nevertheless, not my will, but yours, be done." The next verse says- "And there appeared an angel from Heaven, strengthening him." God knew what had to be done. Jesus had to die on the cross, in order to save you and me from our sins, so that we may have eternal life in Heaven. This HAD to happen. It was God's will. We don't always understand why things happen to us... but when we fully rely on him, he will give us what we need. God DID give us 27 days with Noah before taking him to Heaven, and I am so thankful for that.

I know so many people who have grieved with us through all of this, and many have been deeply impacted. Our friends and family who stepped up to help us and love us have been beyond incredible. That's God's love pouring out through his people. My prayer is that everyone can draw closer to God through Noah's life. Noah is WITH God! Right now. Rejoicing, praising, and fully living. I greatly look forward to the day when I too will be doing those things. For now, God has me right here... and he has a plan for me and every one. I strongly feel that God wants to use Noah to bring more people to him. Life is short, friends. Live for the one who loves us more than we could ever imagine or deserve. 

Thank you, Noah.... you've changed me forever. One glorious day, we will be together again <3

Welcome Noah Lee Yost!

Our sweet baby boy arrived on Wednesday February 25, 2015. Here's the story...


On Sunday, February 22, we decided to head to Munson after I had a sleepless night. I felt "off" and my blood pressure readings had been high. I debated about going in, but after talking to my mother-in-law who is a retired nurse, I decided to play it safe and go get checked out. Once I got to Munson, they found that my blood pressure was high and protein was +3. Dr. Wright told me that I now had preeclampsia and they would be transferring me to U of M. At first we thought it would be via ambulance. Then he mentioned helicopter, and the final decision was private jet. So U of M flew their jet up. They started me on Magnesium Sulfate (I had no idea what I was in for with this!) and fluids (plus a lovely catheter), and a steroid shot to help develop his lungs, and they loaded me up on the stretcher. Took an ambulance from Munson to the airport. They drove right on the runway and unloaded me (it was freezing cold and super windy!) and we got onto the jet. The door was quite narrow and my shoulders touched both sides of the doorway. I asked how they got big people on this plane, and they said they don't! The plane was pretty small. We had 2 pilots and 2 in-flight nurses who were great. We landed in Howell and had another ambulance ride to U of M. Everyone was so helpful and kind.

Arrived at U of M, and Ben's parents were here already. The docs came in and evaluated me and hooked me up to blood pressure, heart rate, oxygen, contraction, and baby heart rate monitors. I was told I'd be on the Magnesium Sulfate for 24 hours from when they started it. This was making me feel quite hot and I couldn't eat or drink anything, or get out of bed. Other than that, I handled this first round of it ok. The docs decided that they wanted to keep him in for as long as possible since the medication had slowed my contractions (that I didn't know I was having) and my preeclampsia wasn't at a dangerous level. I didn't sleep much at all that night being on the medication. I kept getting really hot and was quite uncomfortable. The next day, they turned off the mag sulfate. I tried to get up about an hour later, and I about fell to the floor! My legs felt like they weighed 900 lbs. The mag sulfate is a muscle relaxant that prevents seizures along with slowing contractions.. It also protects baby's brain from cerebal paulsy. So it was very important... just had to deal with some rough side effects. I also received another steroid shot, but the mag sulfate made me swell up so I was pretty numb, and barely felt it :) Monday and Tuesday were pretty quiet days, with more monitoring and testing. My preeclampsia had stabilized. We started discussing delivery plans, and the docs mentioned removing fluid from his belly before he was born, otherwise he wouldn't fit and we would need to do a vertical C-section in order for him to fit. I definitely wanted to avoid that. They decided to wait until I went into labor to do the fluid removal, otherwise it would have a chance to re-accumulate. On Monday, the U of M Flight Crew stopped by with 3 U of M teddy bears for the kids and Wings for me. So thoughtful of them!!

Wednesday was quite a day. My preeclampsia levels stated to rise even more, and the docs decided to go in and drain some of the excess fluid in his abdomen via paracentisis. They also put me back on the horrible Magnesium Sulfate. They were able to remove over 500ml of urine that had collected in his belly. It was a pretty incredible thing to see. They put a huge needle through my belly (ouch) and had an ultrasound to guide. Dr. Berman performed this, and she is pretty amazing. There was another doctor holding a tube that connected to the needle, and she was pulling the syringes to drain his urine. There were also 3 or 4 med students/fellows helping out. Soon after they were done, my contractions continued to get stronger and the docs came in and decided that it was time to break my water. We wheeled back to the OR and delivered. It was nothing like a normal delivery. I was fully dilated, but had no urge to push... I just had to do my best. He came pretty quick (Dr. Berman did quite a bit of pulling too). I got to hold his head for about 5 seconds until they took him to NICU stabilization area. I had a large amount of blood loss (over 1.5 liters) and was right on the verge of needing a transfusion and possibly a D&C. Things quickly turned into severe preeclampsia. Dr. Berman had a difficult time with the placenta because it was so thick and sticky. My blood pressure started to drop pretty low, and they sent Ben out of the room. Thankfully, she got the placenta out and the bleeding came under control and I was sent to recovery. Did not need anestesia or a D&C.


I honestly felt horrible... So sick (puking a lot) and emotional. I was so worried for Noah. Lots of praying. After 2-3 hours in recovery, they sent me back to my room. Ben went back and forth between seeing me and Noah, and all of our parents were here as well. We didn't have much info, except that he was put on breathing tubes and was doing ok. I later found out that it had taken 6 tries to get his breathing tube in due to his enlarged tongue. 

On Thursday, I still felt pretty awful. I was still on the mag sulfate. They said 24 hours after delivery, so I was on it most of the day. That plus the preeclampsia made me pretty miserable. My mom said that she would be talking to me and my eyes would just close and I was totally out of it. I also said some things that I have no recollection of... crazy drugs! I was given limited info on how Noah was doing... They were just doing a lot of testing and monitoring and they weren't sure how he was going to do.

Friday morning, I tried to get to the wheelchair to go see him. 2 nurses helped me stand up, and after about 2 seconds, my blood pressure dropped really low and I felt like I was going to pass out. The docs came in and said I needed a blood transfusion, so they hooked me up and I got 2 new units of blood. Kind of crazy, but I felt a lot better after that. That evening, I was finally able to go down to see Noah in the NICU. 

It broke my heart to see how big his belly was. I knew from all of the ultrasounds that it would be very enlarged, but seeing it in person was not easy. He had a small breathing tube in, and a PIC line that wasn't in the totally right spot yet (a few days later they got a new one in that worked much better). He also had a catheter put in to bypass the obstruction that started all of the problems. They also sent in genetic testing for Beckwith-Weidemann Syndrome. 2 of the main markers are an enlarged tongue and omphalocele, which he has both. The omphalocele ruptured at birth (Ben saw it... so glad I didn't). They were able to get the protruding intestines put back in and closed the hole with some stitches and surgical glue. Another marker of the syndrome is overgrowth, which they also believe he has. He was 6 lbs 15 oz at birth, and 16". A lot of that weight was extra fluid, but they also think he is big for his gestational age. Still waiting to receive those results. Noah also has a small hole in his heart which is very common with premature babies. They usually resolve themselves and close on their own, so they'll be watching for that later. The docs believe that both of his kidneys ruptured after looking at an ultrasound. They also started healing quickly after that. They closed up and there hasn't been any urine leaks that they could tell. So that was wonderful news... his kidneys are one of our biggest concerns. They turned Bili lights on for him after a couple of days to help with jaundice. They were on for 3-4 days and then they came off. They always had a little eye mask on him to protect him while the lights were on. He had quite a bit of fluid escaping from the omphalocele, which is when they decided to do a surgery.

On Tuesday March 4, Noah had his first trip to the operating room for surgery. They were able to successfully use a surgical mesh to cover the hole and stitch around it to attach it. They also removed his small breathing tube and placed a new one that would be more efficient and leak much less. When the surgery team came to get him, I felt like I was going to pass out... They were unhooking everything and tons of alarms were going off. Then they wheeled him away... took a bit for my heart rate to come down! Did a lot of praying during this time. Amy was with me, as Ben had went to take the kids home for a couple of nights. We didn't know about the surgery until the night before, and he was already home. So, they gave me a buzzer that paged me to come down to talk with the surgeon after they were done. I think it took about 2 hours... When we went in for the meeting, the surgeon said that Noah did GREAT! They were able to successfully do everything they wanted, and he did great on anesthesia. She also told us that she believes God picks special families to go through situations like this with special children. So nice to hear her say that :)

I thought I was finally going to get discharged on Thursday March 5th. I took a shower and then they came to check my blood pressure and it was super high again. They decided to double my Enalapril and add a second medication. On Friday March 6th, I officially got released :) My heart rate went up to 157 first... so they did an EKG which came back normal. They told me to just take it easy and rest when I started to feel my heart racing. So far, Ive been feeling pretty good. We are staying at the Med Inn Hotel right inside the hospital. It is quite a hike to Noah's room from here, so Ben has been pushing me in the wheelchair :) Feeling better today and walking around a little more. Trying to take it easy so I don't overdo it. I've been pumping and I'm not getting near the amount of milk I had with the first two... but it's improving. The lactation consultants said that preeclampsia can really delay milk production. I sure wish I could be nursing him instead... but it will be quite awhile before he is ready for food. He is receiving nutrition (TPN) through IV's right now until he is ready for food. I've had several talks about my blood pressure medication passing into the milk, and the nephrologist (kidney doctor) and neonatalogists will decide when it's time. So I'm marking it on the labels and the super-convenient milk room on the NICU floor is handling everything. So nice to just drop off my milk and they freeze and store everything!

Things are calming down a little bit with me getting discharged... starting to get used to my new "normal". One of the hardest things is not having my kids with me all of the time, but they have been visiting and staying 1-2 nights at a time. I pray that the day comes soon when we can go home with all 3 of our children. It will likely be awhile... but the Lord is getting us through this, one day at a time. We have amazing family and friends that have been supporting us. I can't thank everyone enough... it has truly been overwhelming.

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight. Proverbs 3:5-6

27 Weeks

Went to U of M on Monday 2/9, and baby boy is still stable and doing pretty well. Nothing much has changed since our last appointment, besides that his bladder went down to 48 ml. My amniotic fluid also went up from 26 to 28cm. I mentioned to the doc (a new doc we haven't met yet who was very nice) that I was having some major swelling in my legs and feet and she called in the nurse to get my blood pressure checked. It was 139/99 which is pretty high for this point in pregnancy. She said that after my appt with the pediatric urologist, she wanted me to go to triage for testing.

Met with Dr. Park who is one of the pediatric urologists at U of M, and he was wonderful. We've been explained what is going on with him by about 4 different docs, but he has done the best job making sense of everything. He drew diagrams for us and showed us exactly where the blockage likely is. He also said that he believes the bladder ruptured at some point, and it might just be a pinhole rupture, and that is why his abdomen has a lot of fluid pockets (ascites). He said it is a good thing that the pressure was taken off the kidneys and chest cavity, but the abdomen being full of fluid isn't great either. Better of the 2 though... so he said it's best we keep him in and growing as long as we can, and the pediatric team will be ready at birth with a plan. He said the first thing they will do is drain the urine with a catheter and do some testing on it. Next, they'll fill the bladder with a dyed fluid and watch on the ultrasound where exactly the fluid is traveling. If it is escaping the bladder and going into the abdomen, then they'll need to do surgery to repair that area. They'll also likely need to do surgery to remove the blockage, but that is a fairly simple procedure (does require anesthesia). The ureters might need some work too since they are so enlarged. He said most everything is repairable, except for kidney function. He does believe there is some degree of damage, but we won't know how much until he's born. He may have bladder issues down the road as well... but again, we won't know that for awhile. It was great to talk to him, He's one of the best in the world!

After that meeting, I was sent to triage where I got to wear an awesome hospital gown and get hooked up to monitors. They had one for blood pressure, my pulse, and baby's heart rate (non-stress test). They had me give a urine sample to test for protein and they took blood. My blood pressure was still high, so they had me lay on my left side which helped bring it down. I felt totally fine the whole time. After 2 hours, the labs came back and everything was normal. There is a chance preeclampsia could develop, so they'll be checking my blood pressure at every appointment. A lady from church has a blood pressure cuff she's going to let me borrow too so I can check it home. I'm trying to take it easy and take breaks throughout the day to rest. I definitely don't want to place any unnecessary stress on our little guy.

Next appointment is Tuesday in TC, then we'll be back to U of M the following week on Friday 2/27. Have been seeing the chiropractor 2 times a week and my back is feeling so much better. Very thankful for that... About 2.5 months left!!

Be still and know that I am God. Psalm 46:10

26 Week Update

Had our 26 week check on Friday down at U of M. Good news is that the bladder is continuing to decrease in volume and is now down to 92 ml. Questionable news is that the amniotic fluid is TOO high... it is at 26cm and the top end of the normal range is 25. So it's not super high, but something that needs to be watched. Also, the ureters were slightly more dialated that before. Again, the doc did not know why. We had Dr Chames again, who we saw the first time. He was only in with us for a short time, and basically said that he's stable, but he still couldn't determine what is going on. He seemed to think there is something else big going on causing everything to happen... but he didn't know what.

After that, we met with the Neonatologist and she was great. She had a resident with her who we have met before and she is also very helpful and nice. They explained what will happen when he's born. We'll likely induce at 38 weeks so everyone who is needed will be there. I will deliver in the operating room so they have all of the equipment needed for him as well. If he is breathing right away, which they believe he won't have a problem with, then I'll be able to hold him for a few minutes before they take him and do a quick evaluation. Soon after, they'll start to do an ultrasound, some blood work, and kidney testing. The results of those tests will determine what comes next. They told us to expect to stay in the NICU for at least a week. Worst case senario is that his kidneys do not function and he needs to be on dialysis until he's big enough for a transplant (20-25 lbs)... dialysis would be about 12 hours every day. Really praying that isn't necessary and that his kidneys are functioning well at birth!

Pregnancy symptoms are full blown at this point for me. Seeing a chiropractor for my back pain, because I definitely don't want to get as bad as I did during the last pregnancy. It is much better now, but still achy. My ribs are super sore, and my feet and ankles (totally cankles) are very swollen. Sleeping is quite difficult... I wake up about every 1-2 hours and have to get up because my ribs/back can't take it. Crazy that we still have 12 weeks left! It's all ok though.... I will take all of this for our little guy!

Continuing to pray for complete healing!!!

26 Weeks

24 1/2 Week Update

Received a great report from the doctor today!! Bladder volume has decreased to 120 ml! It was at 244, then 187, now 120. Amazing. This took a lot of pressure off of the chest cavity and it means that there is good muscle tone around his bladder. There are pockets of fluid (ascites) in the abdomen, but that is expected with this. At first, the ultrasound tech and Dr. Kurtz were talking and thought it might be pulmonary... which about gave me an anxiety attack. Fluid around the heart is the first sign of heart failure. They started looking at different angles and found that it was below the diaphragm... huge relief!

The next thing they'll be looking at is lung function, along with continuing to monitor fluid levels and bladder/kidneys. They'll want to see him inhaling and exhaling the amniotic fluid, which they can start to see I believe at around 28-32 weeks. Won't know 100% about lung function until he's born, but seeing this will definitely be a great sign. Kidney's were about the same. Our next appointment is down at U of M and after the ultrasound, we will be meeting with Neonatologists to go over what to expect when he arrives!

Great news today... Thanking Jesus for his continued healing for our little boy!

24/25 Weeks

23 Week Update

We had our 23 week ultrasound check at U of M yesterday (Tues 1/12). It went great!!

The ultrasound showed right away the blood vessels coming out of his heart that couldn't be seen the week before. Huge relief. Still no fluid around the heart, and normal amniotic fluid levels, which is great. More amazing news... the bladder volume went DOWN!! At U of M they have the ability to calculate the fluid volume inside of the bladder. 2 weeks ago, it was at 244 cc's. That is the size of a normal adult bladder. This week, it went down to 187 cc's. Pretty significant decrease! Dr. Treadwell said she thought that the obstruction may have blown out (miracle!) or it could be a partial obstruction that releases when the pressure builds up. Either way... great news. The smaller volume also decreases the pressure on the entire chest cavity which gives those organs more room to grow. Dr. Treadwell was very pleased with everything she saw!

I brought up the fact that just 3 weeks ago, we were told down there by a different doctor that he didn't think our baby had a very good chance at surviving, and he asked if we wanted to end our pregnancy. She got a surprised look on her face, and she told us that she thinks our baby has a great chance. She said there are certainly still some big concerns. The major ones being probable kidney damage and the possibility of lung damage... But with what we can see, she thinks chances are really high of a great outcome. What a relief it was to hear that.

We will most likely be delivering at U of M and be staying in the NICU for awhile. The plan will probably be to be induced right around 38 weeks, and we'll have the right doctors there when needed. One of the neonatologists were in the room with us during the ultrasound and visit with the doctor. She briefly went over what to expect right after delivery. They will have a team of pediatric specialists there at birth to immediately evaluate him and figure out what the best treatment will be. There will possibly be bladder surgery and maybe one to remove an obstruction if necessary. They'll be watching the lungs closely to make sure they're working well. She threw a ton of information out, and it's hard to remember everything she said... but we are sitting down for a neonatologist appointment at our next visit to go over everything in detail. We will also be meeting with a social worker to discuss our stay down there. The following visit, we will be meeting with a pediatric urologist as well. I really feel like we are in the best hands down there.

Seriously relieved after this visit... I know this is still a serious situation for our little guy, but I now feel the most hope for a great outcome than I have since we found out about this. We truly appreciate all of the prayers... and I believe that God has begun healing our little guy! If the obstruction didn't release, this could be much, much worse. So, thank you Jesus!

"Now faith is the assurance of things hoped for, the conviction of things not seen." Hebrews 11:1

22 Week Update

Just got home from our 5th Ultrasound for our little guy here in TC. Not much change, which is good! No fluid around the heart and it still looks normal. Amniotic fluid levels are good. The one thing our doc did not see was the blood vessels coming out of the heart that connect to the lungs. If those didn't form correctly, then there could be some sort of heart defect... but because they didn't see them doesn't mean they're not there. She said once he grows a little bigger in the next few weeks, they'll be able to get a better look. So... not going to worry about that right now. Kidneys are still functioning well at this point. If they weren't, there wouldn't be any amniotic fluid. Dr. Kurtz was very happy that they didn't see any fluid around the heart. She said she was very pleasantly surprised at that, since there has been a lot of compression. Fluid around the heart is a sign of heart failure, so we're going to keep praying for a strong, healthy heart. And kidneys. And lungs. :)

Next appointment is down in Ann Arbor on Monday, and we're praying for another great report! Hopefully they can get a good look at those blood vessels.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
—Ephesians 3:20–21

Hi Everyone!! He's hiding. And waving :)

22 Weeks

Baby Yost #3's Journey- First (long) post

Baby Yost #3 is a BOY!!!

We had our 20 week Ultrasound scan on Dec 23rd, and received some tough news. I knew something wasn't right during the ultrasound, because the tech stopped talking about after 5 minutes into it. After a few measurements, she told us that we weren't going to be able to find out the gender today and that we would be having another ultrasound soon. Ben and the kids were in the room with us, so he took them to the car while I waited to see Dr. Kurtz. They don't sit too still in the office.

I kept trying to keep calm while waiting for the doctor to come in, but my heart was racing. When the nurse took me to check my weight, I saw the ultrasound tech and my doctor having a serious conversation. It was the longest 15 minute wait ever. Dr. Kurtz came in, and told me that we have a problem with our little one. She told me there is likely a bladder outlet obstruction which is causing a very enlarged bladder and kidneys that were pressing up onto the heart and lungs. In addition, they found that the amniotic fluid level was low. She told me I needed to see a perinatologist to see what they could do, if anything. She said the best case scenario is that they would go in and place a shunt into the baby's bladder to release the urine, but she was unsure. I asked her what the worst case scenario was, and she said that our baby might not make it. Hardest news I've ever heard.

That appt was on Tuesday morning, and they said the soonest I could get in to see a perinatogist was the following Monday in Grand Rapids and set an appointment for me. When we left, we headed down to Harrison... and I was quite emotional. I decided to call my doctor back and see if we could get in somewhere else sooner. They made some calls and made an appointment for the next morning (Christmas Eve) at 9 AM at U of M.

When we got to Ben's parent's house, we did a lot of praying. Jim and Amy and their friends who are elders in their church came over and we all prayed together. I started to find some peace feeling that God was in control of this. I later found out that over 500 people were praying, including 2 churches during their Christmas Eve Services. There is serious power in prayer.

I slept maybe 3-4 hours total that night, and we woke up early to head to Ann Arbor. The ultrasound tech took us back and did a full anatomy scan that was an hour long! She was able to explain things as she went, which was very nice. She showed me the kidneys, and the normal size of them. They were about twice the size they should have been. She told us that she was looking for cysts which are signs of kidney damage, and she couldn't see any which was good. The bladder was about 4-5 times normal size. She checked the amniotic fluid, and it was normal!! I was shocked at that, because we were told it was very low the day before. Power of prayer?! She also said she was pretty sure we were having a boy :) After she was done, Dr. Chames came in and did some scanning as well. He pointed out the same things the tech told us. In addition, he said one of his feet was mildly clubbed, which could be due to several things. He also said the placenta was thick, which also could be due to several things. Also, he was measuring a little bit small. After talking for a few minutes, he asked us.... "Is ending your pregnancy an option?" Most heartbreaking question I've ever heard in my life. Almost lost it. Ben immediately said, NO... and the doc said, alright, well that changes how we go about this. I had to take a few minutes and pull it together before I could speak again.

After the ultrasound, we headed into a room with a genetic counselor. She told us some things all of this could be caused by... and honestly, I wasn't sure what any of it really meant at the time. If these things are being caused by a genetic defect, it wouldn't change a thing we did. After about 5 minutes of listening to her, the doctor came in again. I went and grabbed my parents who were in the waiting room. He went over everything again, and he said he was pretty skeptical about our baby's chance at survival. I didn't know what to say.... didn't know what to ask. He said we could do the bladder shunt, but the main reason they do that is to increase the amniotic fluid around the baby which wasn't a problem. He said our case is unique, and he suggested we come back the following week and see if anything changes. So we set another appointment for the following Tuesday, Dec. 30.

On Tuesday, we headed down to Ann Arbor with Jim and Amy. Had the ultrasound, and it was much shorter this time. She checked the amniotic fluid levels, which were normal. Nothing changed with the kidneys or bladder. The heart was still functioning well. A different doctor came in this time, Dr. Treadwell, and she was fantastic. She did a little bit of scanning, and then we headed in to a room to talk.

She explained to us 4 different things that could be causing the enlarged bladder and kidneys. The most likely cause is posterior urethral valves which occur in boys and it is a developmental obstruction that forms... or a small extra fold of tissue. That's it... and it blocks the flow of urine near the end of the urethra. The second thing could be Prune Belly, and then there were 2 more options that I can't remember the names of. They had to do with the bowel and urinary tract developing improperly. She said it is very likely the posterior urethral valves. She thought that there is probably a pinhole-sized opening somewhere in the blockage that is allowing some urine to pass once the pressure builds up enough. That is why there is fluid around him. She said there may have been a period where there was very little fluid, which is dangerous for lung development... but we don't know when or if that happened. 17-23 weeks is critical to lung development, so if it happened during that time, then we may have lung issues to worry about. The club foot could have been caused during a time of low amniotic fluid when he might have been constricted space-wise. Could be something else too. The thicker placenta could be a sign of distress for the baby, but also could be something else too.

She said the kidneys did not have cysts, which is good... but they were reflecting back some brightness in a certain area which usually indicates some degree of kidney damage. We don't know how much. She said many kids function just fine with some damage, and there are things that can be done if there is more severe damage, like dilation or a transplant down the road. Also, kidney damage typically happens before 20 weeks, so it likely won't get much worse during the rest of the pregnancy. She said after birth, they would asses the degree of damage. They would also likely do surgery right away to remove the obstruction and possibly repair the bladder if needed. The club foot is a minor issue, and can be fixed with casting and/or bracing. She said weekly ultrasounds will be necessary to monitor the amniotic fluid and make sure the compression on the heart and lungs isn't too much. If fluid starts to form around the heart, that is a sign of heart failure... and then we would likely opt for the shunt to relieve that pressure. So far, the heart is doing well, so that isn't necessary right now. I asked about possibly early delivery to get the problems fixed sooner.... and she said that if there was any lung damage due to low fluid at any point, then the baby would not do well if born too early. So the goal will be to get as close to full-term as we can.

We decided to do ultrasounds every week, back and forth between Traverse City and Ann Arbor. The next one will be in TC, and they will be checking the same things. Definitely helps with not having to make the 4 hour each way drive every week. I felt so much better after this appointment than the last. I know nothing changed, but I felt that we were really explained our options and I had a lot more hope.

There are still a lot of question marks... like, was there any lung damage? How severe is the kidney damage? What about the bladder? Could there be something genetic causing all of this that might be more serious than all of the other things? We just don't know. Sure, we could go in and do amnio testing, but there are always risks with that. Water could break, I could go in to early labor, risk of infection.... and it really wouldn't change anything. I have been reading so many medical websites about this, and I feel that I have a really good understanding about the condition and possibilities. I've read stories about kids who have had this and have been ok, and others who have not. Because we never saw a point with no amniotic fluid, my hopes are very high. My biggest concern is pressure on the heart at the moment... and what labor/delivery is going to be like. We will most likely be delivering in Ann Arbor (possibly Grand Rapids). Like I said, there are still many unknowns. We will continue the weekly ultrasounds and most importantly, PRAYER!

I know God's got this. He is the ultimate healer and he is in complete control. There's nothing I can do to change anything, and I have to often remind myself of that. God loves this little boy even more than I do, and he has a plan for him. Trust in the LORD with all your heart and lean not on your own understanding. Prov. 3:5. We are fully relying on the Lord!

18 Weeks

20 Weeks