Update on Judah


Here is a very in depth update on Judah, as well as ways to be praying and other ways to show support. This is VERY long. We're sorry. But a lot of details to catch everyone up on. Future updates will not be as long. (You can download a PDF of our letter here in case it's easier to read that way)

Dear family and friends,

We wanted to send out an email that would serve 3 purposes: 1st to update everyone on Judah. For most of y'all, you have at least some vague idea of what's been going on with Judah and his health problems. But I'm also sure there's a few of y'all who haven't a clue. So we want to give a chance for everyone to get on the same page. 2nd, to provide y'all with specific prayer requests, as well as praise. Praying for Judah's health is absolutely at the top, but there are also other more specific ways y'all can be praying, and also praising the Lord along with us. And 3rd, provide y'all with practical ways y'all might could help and support us.

First - Judah's Health

To get everyone on the same page we would like to give a recap of the last few weeks.
Judah was born March 20 and was 7lbs 2oz and 20 1/4" tall. He was a perfect example of a healthy, beautiful newborn baby. After being in the hospital for a few days both Mom and baby were well so we were discharged and sent home. We were home for about a week and a half but on the night of April 3 he came down with a fever. Since fever in a newborn is a very bad thing our pediatrician told us to go straight to the children's hospital. We were there until Sunday April 6. During our time at the hospital they ran lots of tests to make sure he didn't have anything serious. His fever went away and all the labs came back negative. Since our oldest child was running a fever that Thursday morning we all chalked it up as he just caught something up from him. So that Sunday they discharged us and we went home.
That following week we had a checkup with the Dr and at the checkup our Dr realized Judah had an ear infection. He put him on meds which he was on for 10 days. 10 days later on the morning of Saturday April 19 he had another fever and his ear was still draining so we took him to our Dr and because of the fever and the fact his ears were still infected he decided to re-admit him to the hospital. We were initially told we would be in the hospital for 2 weeks because they would need to run a lot more tests. We ended up only being there for a week before they discharged us. All the tests for serious diseases came back negative, he’d been fever free for a couple days and his ears seemed to be getting better. However when looking at his blood work they realized his neutrophil level was at 0%.
A neutrophil is a type of white blood cell and it's the one that helps your body fight infection. So being at zero means your body isn't able to fight any infection on its own. Our Dr and a team of other Drs, including some hematologists, presented 3 theories (or options as we all have been referring to them). First option, he is battling a really bad virus which has wiped out his neutrophils. Second option, an antibody was passed from Vanessa to him which was causing the low neutrophil level. And the third option was something called congenital neutropenia and is something where ones body is unable to produce neutrophils. Options 1 and 2 weren’t major concerns because those 2 options were something that would resolve itself after time. Option 3, on the other hand, is obviously something much more serious.
We were discharged from the hospital the following Saturday (April 26) and his neutrophil level was still at zero. That following Tuesday we had a check up with our Dr and his level was at 7%. However early Friday morning (May 1) he had fever again so we took him back to our Dr. They did more blood tests which revealed level had gone down to 1% and his ears still were infected. So he was admitted again to the hospital and Friday evening they went ahead and sent him to surgery to get tubes in his ears. Once again, his fever went back down and cultures came back negative. Up until now everyone seemed to be thinking option 1 or 2, but this time around our Dr began hinting that we may be facing option 3.
Now, we want to hit pause and stress something. NO ONE has diagnosed Judah yet. Please understand that. NO diagnoses have been made yet.
Sunday morning is when our Dr hinted to us it might could be option 3. However when he came by Monday morning we tried asking him questions specifically related to option 3 and he wouldn't answer them. Him and the team of Drs want to wait until Judah is about 8 weeks old before they test the bone marrow which would help determine if it's that. That Monday morning as we asked him questions related to option 3 he repeatedly responded to us by saying "It's still 2 weeks away before we test for that. I’m still hoping in the next 2 weeks his levels will shoot way up and we won't have to worry about that. When we get to 2 weeks and if we have to test for that then at that point I'll share all the theories, thoughts and ideas I have in my head." He also strongly encouraged us not to dwell on that right now because, as he said, we will drive ourselves crazy if we do that.
So that brings us to the present. On Monday (May 5) we were discharged. Monday night, when we began this letter, we were thinking as long as no fever we would be home for the next 2 weeks and just waiting to see if his body starts producing neutrophill on its own. However, God had different plans. Tuesday afternoon one of the hematologists called Vanessa and explained that the team of hematologists has been following this case and they feel it would be wise to god ahead and do the biopsy of the bone marrow. They’re thinking is, let’s go ahead and see what the biopsy tells us and what we’re facing, rather than waiting 2 more weeks and hoping Judah doesn’t contact anything more severe. So tomorrow morning (Wed. May 7) we will be taking Judah back to the hospital and the Drs. will perform a biopsy of his bone marrow. As long as everything goes smoothly we will be in the hospital overnight and then discharged Thursday morning.

Second - Prayers and Praise

Our top goal is to keep Judah healthy. But there are other more specific ways to pray for us too. There's also been encouraging things that have happened so we want y'all to join with us in praising God for those things.

Ways to pray…

• Judah stays healthy and remains fever free
• His neutrophil levels start shooting through the roof!!!!!!!!!!!!!!!!!
• The biopsy goes smoothly and he recovers quickly from it.
• That God will guide the Drs. hands as they put him under anesthesia and perform the biopsy
• Patience for us while we wait for results and also to see if his body can create the neutrophills on his own
• The ear tubes do their job and his ears get healthy and he has no more ear infections. The ENT Dr looked at his ears before we left on Monday. He said Judah's right ear looked good but that his left ear (which has been the worst of the 2) was still swollen so he couldn't really see the tube, and therefore doesn't know for sure if it's allowing his ear to drain properly.
• Because his left ear is swollen we aren't sure if the antibiotic eardrops are getting down to the ear drum. Pray the swelling goes down so that we can get the meds in there. Also, because of this, the Dr also gave an oral antibiotic. So pray the oral med helps heal the ear and reduces the swelling.
• That we will be diligent about cleaning and sanitizing things, and go the extra mile to accomplish that. That whole "oh a little dirt won't hurt the 2nd child" mind set can be difficult to break away from. So even though the paci has fallen on the floor for the 100th time, pray we don't let up and will clean it off for the 100th time before we give it back to him.
• On the flip side: it's impossible to protect him from every germ. So pray we don't make ourselves go crazy or become paranoid to an unhealthy level.
• We are also super paranoid about fever, so any time he feels slightly warm we end up in panic mode. Pray we don't drive ourselves crazy about that either
• That he gets back on a good schedule (sleeping and eating). Being in the hospital so much has made it really hard to get any sort of a schedule. He is definitely over tired and has lately just been snacking a lot rather than eating a full meal. We need to get him into a routine.
• Which leads to us. The routine would be great for us too. We are very tired (physically and emotionally). Pray we get great sleep now that we are back home
• That we can get settled back into life, and that Hart can get back into a normal routine at work
• That those of us around Judah a lot (Hart, Vanessa, Cai and Vanessa's mom Linelle, who is staying with us during the weeks) would not get sick and/or expose Judah to anything.
• That if we or anyone else who comes into contact with Judah does get sick, will know well enough in advance so we can make sure to not expose Judah to it.
• That Cai will be mindful of germs and understand the importance of not exposing Judah to germs right now
• That we make efforts to give Cai special attention and that he won’t feel forgotten and ignored by us because of how much attention we've had to give Judah
• That we (Hart and Vanessa)can properly balance giving each other attention and our children. And that we continue making our date nights a priority
• Pray for B (our foster daughter). Thankfully Harts cousin is willing and able to keep her right now. The problem we face with her is she has to go 3 times a week to a place where she sees her mom but is also around a bunch of other children. And by being around a bunch of other children she consistently brings home all sorts of sickness week after week. Thankfully we've had friends and family able to keep her so far. But it's going to be at least a couple weeks before we can even consider bringing her back home, so please pray she acclimates well to the constant changing environment. Also pray she is protected from sickness. And pray that DSS would be willing to work with us and find a new arrangement for her to still see her mom but not be around all those other children. At this point we cannot continue having her around all those children and germs and be in our home.
• That Christ is glorified and His Kingdom advances
• That God uses this trial to draw us closer to Him
• That God uses this trial to draw others to Him
• That as the church (both our local body we worship with and also the bigger ‘C’ Church) has and continues to jump into action it would bear a testimony to those outside the church and encourage them to find a God fearing, Jesus loving, Bible believing church and get plugged in to it

Praise and Thanksgiving…

• Despite the fevers and ear infections, he is otherwise a healthy baby. He is eating well (he’s a chunk!) and thankfully outside of ear infections he has not contracted any serious illnesses
• The hematologist that called Vanessa today made a comment towards the end of the conversation about Judah’s name being a ‘religious’ name. Vanessa shared that we are Christians and then Dr. said he was a Christian too and that he would like to pray for us. He then proceeded to pray for our family and for the biopsy tomorrow. As they talked more Vanessa learned which church he attends and made the connection that Cai’s teacher from this year attends that church as well. He knew that family and spoke very highly of them, and this evening Vanessa spoke with Cai’s teacher and she sang the praises of this Dr. Praise the Lord for putting us in good hands!
• Thankful for how God has provided and met our needs over and over these last few weeks. Blown away by the generosity of everyone, and the way our family, friends, our church body (Columbia Crossroads Downtown) and other believes from other churches have rallied around us. Countless meals people have brought to us at home or in the hospital as well as lots of gift cards so we can get food.
• Family and friends taking in Cai and B, especially when we’ve both (Hart and Vanessa) have been in the hospital with Judah
• Our parents and other people who have literally dropped what they’re doing to come help us
• Our neighbor mowing our yard
• People dropping off gifts and goodies
• Hart having a boss who is extremely flexible and understanding and willing to let Hart take off time to tend to things
• The many many many emails and text messages people send with words of encouragement, prayers, scripture, etc
• A Pediatrician who clearly cares about our children. Who is knowledgeable and diligent enough that he hasn’t just treated the symptoms but rather is doing the research to get to the bottom of this. Who isn’t prideful and is willing to get other Drs. involved and ask their opinion when he thinks they know more about something and that we can benefit from their expertise. Who takes our hands and prays with and for us.
• The Children’s Hospital and the many awesome nurses we have had.
• Hart is especially thankful for Vanessa coordinating with a friend, and a friend willing to go buy and bring to the hospital balloons, goodies and a gift to Hart on his birthday. Also thankful for Hart’s Mom who stayed up in the hospital with Judah so Hart, Vanessa and Cai could get out of the hospital for a couple hours to celebrate his birthday
• Vanessa’s mom who is staying with us during the weeks and has helped so much with chores around the house like laundry and dishes
• The family and friends who have visited us, have prayed with and for us, and even provided shoulders to cry on
• Our community group from church who this past Sunday night scrapped their plans of a Bible study and just spent the time praying for us
• Friends who have been adding Judah to their churches prayer groups and lists

Third – Practical Ways to Help

Above all we ask that you join us in prayer. There’s times where we just feel overwhelmed by all this and praying just seems like such a difficult thing to do. Please feel free to pass this along to your family and friends who you know would also join us in prayer. We realize for most of y’all, either because of geography, job or school requirements, family obligations, etc, prayer is the only way you can support us. And that’s huge. Please do not take that for granted! But for those who are available and willing and looking for other ways to help, here you go:

• Meals. Because we’ve been in and out of the hospital so much, we haven’t done any grocery shopping. Now that we’re home hopefully for an extended time we can do that, but in the mean time it would be helpful to have meals. Our friend Merideth Davis has kindly taken the job on of coordinating that. You can visit this link to sign up to bring a meal: http://mealbaby.com/viewregistry/17190675
• Available to keep Cai. Since we’ve been in and out of the hospital so much, Cai has been shuffled around a lot. So we really want to try and keep him right now so that we can spend time with him and also give him a chance for his little world to slow down and get some semblance of a routine again. But for the times that Vanessa needs peace and quiet, or when she has to take Judah to appts, it would be nice to have people available who can keep Cai during those times.
• Last minute babysitter for Cai. We are desperately praying for no more fevers and no more returns to the hospital, but if in the event God has other plans and Judah gets a fever, we pretty much have to drop what we’re doing and take him to the hospital. It would be nice to have a list of people who have the kind of schedules that allow them to drop what they’re doing and could come be with Cai at our house until we figure out what we’re doing with him, if in the event for some reason we can’t get one of the grandmoms to our house ASAP.

We know this was a long letter and a lot to take in. But we hope it’s given y’all a glimpse of what’s going on and allows y’all to know how to be specifically praying for us and supporting us. Again, above all we covet your prayers. And we encourage y’all to pass this letter along, as well as to our blog (or specifically this link: http://hartandvanessablog.blogspot.com/search/label/Judah%20Updates all Judah Update related posts can be seen there) to anyone you think would be interested in knowing what’s going on, and how to be praying for us.

But we do ask this. We want our words and updates to be the final words in all this. So when you pass our story and updates along to your people, please let the words and messages we post publicly here on our blog do the talking. Please DO NOT add to what we have said. At this point there are lots of theories, possible explanations and possible diagnoses for what is going on. If you talk to us in person we most likely will be pretty open with you and share what those are. But at the same time, since that’s all they are right now (theories) we don’t want rumors, wrong information or miss-diagnoses to begin spreading. If you recall the game telephone where one person whispers something to the person next to them, and that person whispers it to the person next to them, and so on, by the time it gets to the end the message is completely different from what the original message was. Yeah, we don’t want that. That just creates more work for us because people will start coming up to us saying they heard Judah is an alien and then we have to explain how that’s not correct. So for official updates, please turn to our blog.

Again, we thank you for your prayers and support. We love you all!

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