We're home finally!!

To recap yesterday's VERY exciting day:

I went in to feed Jeshua at 8:00am yesterday morning and Dr. Walker came in to check Jesh out right after I arrived. He said that Jesh looked great and was feeding so well that I should be nagging the nurses and Doctors to get out off the NICU. 2 minutes after he left the DISCHARGE nurse came to talk to me about all the equipment I would need to go home. She then asked if I would like to room-in with Jesh on Friday (*side note* "rooming-in means that parents stay with baby in the hospital with no monitors and minimal help from nurses. We would need to handle all the feedings, changings and care of baby. I think the whole process is to grade the parents!) Of course I said yes, and of course I started to cry, because this step would be our last step on the way home. The last we had heard we wouldn't leave until Monday, but this meant that we would be leaving Saturday. After the discharge nurse came in Dr. Walker came back and told me that he wanted me to room-in that night! WOOWOO! And go home today, Friday. All the nurses were going crazy, they couldn't believe how fast Jesh recovered and how fast we were able to go home! Our little boy has been doing so amazing in his recovery and is so strong, we are very blessed.

I fed Jesh and immediately went back to the Ronald McDonald House to clean and pack up. In between feeding Jesh I was able to get all the checkout complete and went to the hospital to stay with my baby. When I got there Jesh had been moved to the intermediate nursery because all his IV's were gone and he no longer needed the "Intense" care of the NICU. I fed him one last time in the nursery and was shown the room we were to stay in. Tyson arrived shortly after and we smothered our little man with more hugs, kisses, and love than he had seen in his short life. We made it through the night with no problems (have to get used to no sleep again!). Dr. Walker visited our room with the discharge nurse and the ostomy nurse. They wanted to check out the colostomy and wanted us to change the bag. Ty held the baby down and I changed the bag all by myself! I was shaking so bad. There were people there grading my performance! They were pleased with how I did things, the ostomy nurse said she never felt so comfortable sending a patient home as she was with us! That gave us a boost of confidence.

The last thing we needed to wait for was the final checkout by the neonatologist. They told us to not expect to see him until 1 or 2 in the afternoon. Around 11:30 Dr. Bodenstien knocked on our door and told us he was not on our case but the other Dr. was so far out from seeing us that he grabbed our chart and came to check us out. Jesh passed with flying colors and we made it out of the hospital by 12:20.

We got home around 1:30, Aaron was so excited to see his brother and Leah was napping. Grandma (our awesome babysitter again) stayed just long enough to hold Jesh and welcome us home. After she left we really were on our own! The kids sure love their brother. Leah has been a little mother to Jesh and sits next to him when ever she can. Aaron loves to hold Jesh, but unfortunately he started throwing up this afternoon and we have to keep them apart. He is so sad.

It is so good to be home with my family. I sure missed my kiddos and being "normal." We sure appreciate all who helped with our kids and helped in other ways. We are so grateful for all your help. We look forward to this short time together before the next surgery, but can't wait for Jesh to be "whole" again. We have been blessed so much.

We will post some pictures when we grab a free minute, which truthfully, may not be for a few days as we enjoy being a family again!

Thanks to all, we will keep the blog updated with our family happenings and progress with baby Jeshua.

will post tomorrow when... WE GET HOME!

Day 10 and PICTURES

Ty finally pulled a few pictures off of his phone. I think we'll spare the ones with the tubing/wires/etc and post his "good" side. He's looking so good now!

Well, today started GREAT! I made my way to the hospital at 8:15 after I received a phone call telling me that Jeshua was awake and ready to eat. I know this doesn't sound so great, but my little man hasn't been "awake" enough to demand eating ever! We have basically been force feeding him for the last few days, but today he demanded. In fact he demanded food all day long, way to go Jesh. Through out the night on Tuesday he was eating 50 ml and sleeping for about 4 hours. Today he was eating on average 60 ml and eating every 2-3 hours. Another great leap for Jesh. Now, I thought that when he ate 60 ml every 3 hours he would be free to go. I thought this only because that is what the doctors have told me. Well, what they didn't tell me is that he has to be totally weaned off his fluids (which they do gradually as he picks up eating) and filling his diaper and bag appropriately for up to 48 hours before they take the PICC line out. The nurse tonight told us that Jesh may be totally weaned off his fluids tonight depending on his next feeding, which is by bottle and measured (sorta hard to measure a nursing baby!!) but not to expect him to go home until the weekend or early next week. Jesh is nursing better than he was yesterday. Even the nurses were commenting on how well he did today. I still finished off every feeding session with the bottle just to have some sort of measurement and to "top him off." So, in short, feedings are way better today.

Dr. Walker (the surgeon) came by this morning to check Jeshua, as he does every morning, and he took Jesh off his antibiotic. One less thing going into his little body. Dr. Walker also asked how many times I had cleaned or changed the colostomy bag. Um, never. He encouraged me to listen to the ostomy nurses and even try changing the bag. SCARY. The ostomy nurse came around 11:00 this morning and walked me through the whole thing. I was able to get the bag off (thanks to my mom who was holding Jesh's arms and soothing him.) We noticed that one of his stitches had popped so now his stoma is more almond shaped rather than round, not such good news. The nurse made a new "pattern" for the opening of the bag and helped me get it on. It sure helped that Jesh had fallen asleep by the time we actually got the bag in place. The bag was still holding tonight so I think I did okay for my first time trying. It sounds like the ostomy nurse will be back tomorrow to help me again. Tomorrow I think I will try all of it by myself to make sure I can do it. I know they are grading my performance as well as Jeshua's so I want to do the best I can to get out of here.

I mentioned earlier that my mom helped me out today. It was nice to have someone with me today. I have been getting lonely. She got to hold and feed Jesh a bottle today. I am pretty sure she enjoyed her time with him. Tyson came back this evening and got to hold his sleeping baby for a while. We had a good night together. Tyson told me a pretty funny story about Aaron tonight, I hope I tell it right. Before I had the baby, Aaron asked how the baby would come out of mom. He actually asked if the baby wound rip my tummy to come out. I of course said no, but didn't really know how to explain the whole thing to a 4 year old. I told him that the baby comes out a special way. That was that. Well, tonight at dinner Aaron asked, completely out of the blue, "how does the baby come out in a special way?" (I am so glad he asked Tyson and not me) Tyson told him that there is a special small opening in mommy that no one can see that gets bigger for the baby to come out and then closes right back up. BRILLIANT! Tyson is so much better at talking to our kids about weird things. Aaron scrunched up his nose and asked if it hurts mommy when the baby comes out. Ty was very honest and said yes it does. Aaron told Ty that boys don't have special openings, only moms! Smart boy.

Anyways, tomorrow is a new day and hopefully things go even better than today and we can start getting this little boy ready to go home to a family desperately waiting for him.

Day 9 in the NICU

Another day is gone and little Jesh is still recovering remarkably well. Tyson handed over the blog to me tonight, he thinks it might be "therapeutic" for me to put down my thoughts and feelings. We'll see. Sorry if my therapy session is not as well written or informative, I will try my best to do both.

Last night the doctors let me try nursing my little baby ("little" sure takes on a new meaning here where most of the babies are under 4 lbs.). I was so excited, I have been waiting for this experience for way too long. He latched right on and I started crying. It was an elating moment for me. He only nursed for a total of 10 minutes, but it was enough for him to sleep for four hours! WAY TO GO BUDDY. His doctors were pleased with his progress so this morning they let him go "ad-lib" which means he can eat however much he wants whenever he wants. If he takes a bottle it is now full strength milk. I was so excited and was determined to make this whole nursing thing work right away. Jesh had different ideas, he would barely nurse this morning, which again made me cry. He did take the bottle well and received 4oml of milk. We tried again at noon, with the same results. We tried again at 4:30, same outcome only this time he chowed down on 45ml from the bottle. Tonight however, he nursed really well and only took 15 ml from the bottle. The nurses told me that nursing is actually very tiring for an infant, and were happy with his progress for the day. The Pediatrician told me that he can go home when he is eating a solid 2 oz (60ml) of milk each feeing. YAY! We are so close.

As far as the colostomy bag goes, well I won't sugar coat it, it is gross. I feel confident that I will be able to change it and keep it working, but it is an overwhelming process. The ostomy nurses are coming tomorrow to give me more training on how to attach it to Jesh's skin, how to clean it, and other tricks and techniques. I am thankful that my mom will be with me to be my second pair of eyes and ears to learn all this new stuff. I am more grateful that this is a temporary situation and that in a month or so we won't have to have the colostomy bag. I think I am getting used to the sounds Tyson calls Jesh's new trick. Tyson on the other hand squirms every time Jesh passes gas through his stoma (the opening in his bowels). It does squeak, which is so weird, and it fills the bag with air that we have to release so it doesn't get too full. All in all, we are thankful that Jesh could have this surgery and recover from it and live a full life.

Tyson spent most of the day with the kids at home. While Aaron was at preschool, Leah spent a few hours with Uncle Jon so Tyson could get some work done. Then they all went home to eat lunch and I think all 3 of them ended up taking a nap! I was able to video call them twice today, it was fun to see them so full of energy and at home. Tyson came over this evening to be with Jesh and I. Jesh was awake and loved to stare at daddy. We had to leave the NICU with our baby still awake. That is one of the hardest things to do. I like to leave him while he is sleeping, it is way easier.

We are proud of our little guy for the leaps and bounds he is taking in his recovery. We will be home soon and taking care of all this by ourselves.

Thanks for listening (reading) some of my thoughts and feelings. I am pretty sure if I was writing the updates everyday it would be depressing for you all. It has been such a hard week. But now that Jesh is on the up side of this roller coaster it is easier to see the positive and the blessings we have received. Thanks everyone for your well wishes and prayers, they have been felt and are working in our favor.

P.S. forgot to mention that Jesh is wearing clothes today for the first time his life! It is way cute.

Jeshua has a new trick

Baby Jesh is kickin' butt! He gobbled down almost every serving of diluted milk he was offered today and is doing his best to fill that little colostomy bag. I haven't had the privilege of changing it yet, but Melissa says it's no fun at all. As far as I can tell, it's not a pretty picture to look at, but it whistles when he passes gas - kinda like an alarm, only more like a parlor trick. We thought for sure the IVs had punctured and were sucking air or something the first time we heard the noise.

They've moved Jeshua into a regular hospital cradle (not really like a cradle, but that's what they call it) because he's progressing so well, and even pulled out his nasogastric tube from his nose! The final apparatus sticking him is the PICC line IV in his little head, which is a special IV that follows a vein several inches down the head and through the neck until reaching close to the heart; they'll keep that in there for safety until they're REALLY confident he's on his way out the door. It used to take at least 3 of us to pick him up and settle him in our arms because of the wires and tubes that needed to be kept slack, but now he's almost as easy as any other. We're still hoping to bring him home this weekend - it's looking really good right now.

Aaron and Leah are doing well and were so glad to spend most of the day with Dad. When I left to meet with a Doctor around noon for a short couple of hours, Aaron was so sad that I might be leaving again. Also, when preparing them for bed and explaining that I'd be gone to Spokane while they fell asleep, I had to promise them several times that I'd be in "Mom and Dad's bed" by the time they woke up. They sure loved their stay at Grandma's, but it's so good to be with them again.

Separation

Baby Jesh continues to do great, and "outperform" on his recovery above what was expected of him! He's now off of all painkillers except an occasional Tylenol. This is great news because babies are typically on pain killers long enough that their little bodies become addicted, meaning they have to wean them off of it even when the pain is gone. Little Jesh has handled the entire ordeal with such a show of strength that he came off of all narcotics much earlier than anticipated and now only gets fussy when he's hungry or when his bandages are changed. We're hoping that tomorrow the Doctor will allow him to start on diluted breast milk (50% dilution). They'll work on feeding him only through a bottle this week to try and get him home sooner, then let us work on the transition to feeding from Mommy when we get him home. But, at least he'll be getting all those good nutrients and immune system boosters that they just can't duplicate in formula. They won't be giving him "full servings" of milk for a couple of days at least. For now, it'll be just enough to "jump start" his digestive system after being empty for so long, so they can test out the colostomy with smaller amounts of food.

While Jesh's recovery is going so well, the day ended in tears as I came home to be with the kids for the week and Melissa returned to Spokane alone. Our kids need us, and it was so very evident today, especially after bringing them home and getting them ready for bed. They'll have to wait a little longer for Mom to come home, but they both spent the evening lovingly mauling Dad right up until bedtime. They ask about Baby Jesh and pray for him, and it's very hard to keep dry eyes when they ask why they can't be with him. Leah follows Aaron's lead more, but Aaron truly is concerned about it all despite our talks, and I wonder what he's thinking when he scrunches up his face to consider what I tell him. The hospital said that when Jesh gets his IV's and nasogastric tube out (the one going in the nose down to the stomach), the kids can see him in a viewing room through glass. This will likely be right prior to being discharged, as they won't remove those things until he is ready to leave anyway, but we're hoping it might happen sooner to give our kids that opportunity.

All next week, Mom will be visiting Jeshua during the days and Dad will drive there at night after the kids go to bed, while somebody from our ward stays at home for a couple of hours in Dad's absence (thank you so much for those who volunteered - it means SO MUCH that I'll be able to be with Jesh and Melissa for at least a short while each evening!). We love our family and our ward family so much and can't wait for you all to meet Baby Jeshua!

Recovery

Jeshua's first day of recovery went very well! He was awake and semi-alert for most of our visits today. He'd been receiving a very potent pain killer called fentanyl through his IV since shortly after surgery. However, he has shown less ongoing pain than expected, and was taken off fentanyl altogether early today. The result: An awake and happy baby (if a little groggy) that we've been able to hold and "coo" at. After holding him for 45 minutes on our last visit tonight, he slowly drooped to sleep in our arms. It was a very sweet moment for us, as were most of the visits today.

Things are really looking positive; we're looking forward to begin feeding him tomorrow and still hope to bring him home next weekend. Aaron and Leah had a great time spending last night with us here at the Ronald McDonald House, and had even more fun skyping with us right before bedtime tonight. They're at Grandma's again tonight, but I'll be going home with the kids tomorrow night for the week while Melissa remains here in Spokane. I will be traveling to Spokane in the evenings to spend an hour or two with Melissa and baby Jesh. Tomorrow or Monday they'll replace the bandages on his tummy with the actual colostomy bag and teach us how to care for this thing. It'll be different than changing diapers, but at least no blow-outs for a little while (although, I think even blow-outs will have new meaning to us after this).

Also, we're pretty sure he's getting cuter :)

Surgery Day

Today was Jeshua's colostomy surgery. A few minutes before 8am, we went to hold him one last time before the surgery. He had a great night free of sedatives and was awake and alert. Mommy and Daddy loved on him with teary eyes until they came to take him at 9am. The NICU doctors and nurses are very good, and the 30 minutes leading up to the surgery was a parade of anesthesiologists, neonatologists, surgeons, infant care nurses, and others who were to be present in the room during the operation - 8 in total! They were all very considerate and patient as they explained further details of the anesthesia, surgery, and recovery, and responded in detail to our many questions. We finally gave him up and went to the waiting room. After an hour, the anastesiologist came out and informed us that he'd responded perfectly and was quietly sleeping through the procedure. An hour later, we had quite a fright when the fire alarm started sounding throughout the hospital! After a moment of panic, the staff informed us that it was simply a fire drill which was quickly silenced.

Shortly before noon, the surgeon emerged from the operating room and told us that everything had gone splendidly. They had found the "cut-off" where the nerve cells ended and the Hirschsprung's began and had performed the colostomy at that point. After Jeshua's next surgery, he will be missing the last 20-25% of his colon, which is considered a textbook Hirshsprung's and positions him for a full and complete recovery.

We were so releived to have the surgery over and done with. After waiting another 20 minutes for the nurses to clean up Jesh's tummy and return him to the NICU nursery, we went back to find our baby looking great! He was completely asleep, still under the effects of the anesthesia, but the ventilator had already been removed and he was neatly swattled looking very peaceful. Prior to surgery, we had been prepped for him to remain on the ventilator for possibly 2 or 3 days while his body "woke up" from the anesthesia. However, he has such strong respiratory and cardiac systems that they were able to pull him off the ventilator almost right away and leave him on a very minor dose of constant pain medication.

Doctors say they'll test out his digestive track with some pedialyte clear fluids Sunday, and possibly start him on diluted breast milk on Monday! If Jesh can muscle through his recovery, we might be able to bring him home next weekend.

Day 5 in the NICU Prep for Surgery

Baby Jeshua was a bit grumpy today off and on and is constantly rooting around or sucking on a pacifier. We're convinced he is fully ready to nurse now and are told that he feels hunger from his empty stomach despite being nourished intravenously, but will have to wait to nurse until sometime mid next week depending on how fast he recovers from surgery.

We met with Dr. Walker today who will perform his colostomy tomorrow and remove the lower part of the colon. Including prep time, it'll be about 2 hours and should be done around noon. The time is not written in stone, as the first procedure is to begin biopsying five sections up the colon to determine exactly where the nerves are so he knows what section to take out. If they don't find any nerves, they'll have to cut and send more samples to pathology, and back and forth until they find nerves. It takes them about 30 minutes to freeze the sample and find out if its got nerves, so hopefully they'll find it on the first shot.

We got to skype with our kids today. I'd recorded video of baby Jesh as he woke up today on my cell phone. So, while skyping, I played back the video so it looked to the kids like Jesh was with us. We didn't intend to be sneaky, but realized they thought he was actually with us and were waving and talking to him and things. It was so cute that we might do it again, even if it is a little sneaky!

After surgery tomorrow, I'll go pickup Aaron and Leah to come and stay Friday night with us here in Spokane for just the night. They won't be able to visit the baby, but it'll be good to spend more time with them.

Biopsy Results

We received the results of the biopsy today just after lunch. But first... Our morning was great! We arrived at the NICU around 8am as we've done everyday, and were greeted by Jen, Jesh's day nurse, with great results from blood work. His potassium had come back into normal ranges, his bilirubin had finally come down (at first it was hardly dropping at all despite the bili-lights), he was still gobbling up pedialyte from a bottle, and he was wetting his diapers like a champ! We enjoyed holding him while he was awake, and he kept flashing smiles while he slept. We came back to NICU after lunch and were greeted with the same happy baby who stayed awake long enough to scan us over once more before crashing for the afternoon while we waited for pathology results. Shortly thereafter, the pediatrician came in to announce that the biopsy results were back and they confirmed that Jeshua has Hirschsprung's Disease. Despite what we'd been told, we were so hopeful that it would come back negative, that Jeshua would get his bowels moving and we'd be home by mid-late next week. Instead, after a few moments of renewed heartache, we gave our sleeping angel kisses and went home for dinner with our other kids Aaron and Leah. We had a great evening of play (more tears for Melissa) and came back to the hospital to hold our sleeping Jesh for awhile.

The next surgery is scheduled for Friday morning at 9:30. We have an idea what'll happen, but will meet with the neonatal surgeon tomorrow to get precise details and sign consents. Ultimately, when the surgery is complete Friday, Jeshua will have a colostomy coming out of his tummy for 3 to 6 weeks and his bowels will begin healing in preparation for the final surgery.

Now that we have a timeline of upcoming events, we'll likely nail down our schedule for the next week. The social worker and pediatricians are now telling us that they expect us to be able to take Jesh (and his colostomy) home for a few weeks after recovering from the colostomy, but before the final "pull-through" surgery. If he recovers well, that'd be around the last week of January. We can't wait for the day we can introduce him to his home, and work him into "daily life" with his big brother and sister.

Jeshua's first time "under the knife"

Baby Jeshua was knocked out today for the biopsy of the rectum. The anesthesia is powerful enough (and babies weak enough) to knock out their respiratory system completely. So, they put them on ventilators from the start. Jesh responded as expected to the various anesthesia and everything went fine. It was another freaky moment to see him on a ventilator after the surgery, but they ended up unhooking it and pulling it out couple of hours earlier than normal because he was fighting it so much and clearly had regained use of his respiratory system. We won't get results back until Thursday, but we're remaining hopeful that the nerve cells will exist in the biopsy. They're also doing some other tests tomorrow to find out why some various readings are off and not improving, so they're x-raying kidneys and liver. That's new to us, but hopefully nothing major.

We left for home around 11:30 after seeing Jesh safe-and-sound post op, and spent the afternoon and evening with our kids at home. They were so in need of time with Mom and Dad as much as we needed to spend time with them. Closer to bedtime, they went back to Grandma and Grandpa's house for the night. We decided to check into the Ronald McDonald House here in Spokane. It's a couple of blocks from Deaconess, and much more family friendly than a hotel (not to mention less expensive). The kids aren't with us right now, but we wanted to check the place out and be closer to the hospital. We're not sure how long we'll be here or what our schedule is really going to look like. We decided to stop trying to plan it all and just wait until Thursday to get biopsy results and at least have a timeframe. At that point we'll try and figure out how to fit all these pieces together.

After checking in, we went back to visit our baby and were able to hold him again for a little over an hour. He was, again, awake and alert, and happy to be held. He even wiped out a bottle containing a tablespoon of pedialyte formula! This was really good news because that was the first time he showed interest in sucking on anything at all, and he did great at it! They won't allow him to eat breast milk yet, but at least he'll be ready when the time comes. Hopefully we'll get some much-needed sleep tonight...

Jeshua Alan Frantz

We are so very pleased to announce that we have a new member of our family: Jeshua Alan Frantz! He is a beautiful baby boy born Friday January 7th at about 2:15 pm, weighing 7lbs 3ozs and 20.5 inches long. We left for Kootenai Medical Center at 4:30 in the morning and were settled in with a pitocin drip by 6:00. We had gone back and forth on whether or not it was a boy or girl, and were happy to be surprised. Labor and delivery went as expected and we were happily settled in with "Baby Boy" Frantz by Friday evening in a postpartum room, wondering what we'd name our new little squirt. "Baby Boy" was sleeping just fine, and in fact didn't do much else! We received welcomed visitors and were pleased to show him off. Aaron met him Friday evening and was so sweet as he held and kissed his new brother. We had to peel the baby away from him, and listen as Aaron repeatedly told us "Thanks for my new baby". He also had some great recommendations on what to name the baby: "Sockey" (cat's name), "Paper towel", "Picture", and "Baby Jesus". All good names, all VERY close calls ("Paper Towel" almost had it!). By Sunday night, we finally decided on a name which Aaron had known all along (kinda): Jeshua Alan Frantz. Jeshua is Aramaic for the name we know as Jesus. That's right Aaron, we named him baby Jesus :) Alan is a family name from both sides of the family. We've americanized his first name and will say it phonetically, and call him "Jesh" for short except when he's in big trouble.

After 24 hours at KMC, the nurses and pediatrician were concerned that he still had no interest in nursing and had no BMs to speak of. Thinking his stomach might still have uterin fluids, they pumped his stomach and found materials that raised small concern. After some x-rays and other procedures, they were able to identify some kind of blockage in his colon. By Sunday afternoon, the pediatrician decided there was nothing to be done at KMC and he would need specialized neonatal care in Spokane, so Medstar came early Sunday evening and took our little gift to Deaconess Neonatal Intensive Care Unit for additional diagnosis, testing, and care.

After running by home to gather a few things, we arrived at the Deaconess NICU to what was one of the scariest scenes for parents to see. The nurses and floor doctor were wonderful, kind, and understanding, but the picture of such a sweet innocent and fragile life hooked up to what looked like a torture rack drew tears from a well we did not know had anything left in it (we think they had to mop the floors at KMC by the time we left - or at least restock every paper towel / kleenex bin in that wing). We had been "prepped" for what we would see, but nothing short of seeing it could truly prepare us. The great blessing through it all was Baby Jesh himself; he had been content from the beginning. His little digestive tract was bloating and backed up, but he expressed no pain or discontent and was sleeping peacefully when we arrived. After meeting with the doctors today and spending much of the past 24 hours with our baby in the NICU, it is a much happier feeling as we enter his nursery and are able to touch and sometimes hold him. The NICU isn't the scary place it was a long day ago, and we have found the staff there to be fantastic and supportive.

Baby Jesh's condition: The neonatologist and lead neonatal surgeon for Deaconess believe baby Jesh has Hirschsprung's Disease. HD is a condition that comes about during development of the baby and has unknown origin (lots of studies link it to chromosomal mutation as with most prenatal genetic conditions) but is thought to be hereditary to some extent. HD is basically the absence of nerves in part of the colon. In most cases, it's 3 to 6 inches, and in some it's the entire colon. As the nerves grow from the top down, it's always the last part of the colon that lacks the nerves. The end of the colon is in a constant constricted state until waste is present, at which point it relaxes to allow bowel movements, however HD causes the colon to remain constricted because it can not sense the presence of waste, blocking off all bowel movements, and ultimately was fatal in the "old days" before it was recognized and researched.

The diagnosis comes through a small biopsy of the rectum to examine the tissue for nerves. No nerves in the tissue means HD, nerves means no HD. While the doctor is not 100% sure until the biopsy is performed, most other signs are consistent with HD and he expects the biopsy to confirm that, which is scheduled for tomorrow (Tuesday) morning at 8:45 am. The biopsy is a simple procedure and is probably less risky than the act of completely sedating a 4 day old baby, but they do this "all the time" at this NICU and we have been assured that Baby Jesh will be fine.

If HD is confirmed, then there will be a small series of surgeries which typically cure the matter completely. First is a series of biopsies and a colostomy which is already scheduled for this Friday morning on the hunch that tomorrow's biopsy will be confirm HD (results come in Thursday, so they'll start the surgeries the day after confirming). They will biopsy up the colon until they find nerves, so they know how much of the colon to cut out. They'll then install (probably not the right word) a colostomy on the remaining colon, which is to say they'll take the end of the "good" colon and bring it through a hole in the stomach and into a bag which will collect baby Jesh's BMs. This will give the end of the remaining colon and the beginning of the severed rectum to heal in preparation for part 2, called the "Pull-through". After 3 weeks or so, they'll sew together those two ends inside of his abdomen making him good as new, but with a shorter colon than the average Jesh. In most cases, no lasting effects beyond 6 to 18 months during which he might not be able to control his BMs. We were concerned about Jesh not being able to control his bowels for possibly 18 months - what a mess that might make! ..... obviously, we'll never know if he fills his diapers indescriminately because of HD, or because he's, ya-know, A BABY!!

In terms of timing, the colostomy and removal would be Friday this week, 2 to 3 weeks later would be the pull-through surgery, and 2 to 3 weeks of NICU recovery. There is a chance we can bring him home between the two surgeries and care for the colostomy at home; the Doctor says its likely, but the nurse says don't count on it. Doc makes more money, but Nurse has worked Deaconess NICU for 30 years. We'll see who wins. If not, it'll likely be late February before baby Jesh gets to come home for the first time, so we are really praying we can bring him home before that.

Through this all, there is a slim chance that Jesh just needed his bowels "jump started". Apparently, there is a VERY small occurrence in babies of mother's who have diabetes (gestational or lifelong) where the baby has a merconium plug that, once removed, allows the bowels to function normally. With lots of bowel stimulation, they got baby Jesh to clear out his bowels almost completely and we're still hoping the biopsy comes back negative and baby Jesh will fill a diaper on his own this week, which would get us home by next week. Here's hoping.

This evening, we were able to spend several hours with our two other kids Aaron and Leah here at a hotel in Spokane which we got with a pool just for them. They recognize their baby brother's absence, and know he's in the hospital, and can't wait to see him again. Aaron keeps calling him his "new best friend", and they have added baby Jesh to their prayers. It absolutely breaks our hearts to think they might not see him again for over a month as kids aren't ever allowed in the NICU. We really really hope to bring him home in between procedures for at least a week to give them that bonding time, but we just don't know if it'll happen. Thanks to loving and supportive family, Aaron and Leah were rushed to KMC when we found out Medstar was on its way to pick up our baby, and they were able to see him loaded in the transport incubator, and give him a kiss right as he left KMC. We just hope to reward their loving patience with a new brother soon.

We have been encouraged and uplifted by the great show of support from our family and ward and we love you all for it. Even though we've not needed much help as of yet (except from awesome grandparents who have kept our 2 kids), it boosts us up to know we have so many true friends.

Today was a good day; the first good day since Friday. It feels like it's been months or more that we've been dealing with this when it's only been a few days. And I think we've felt months or more worth of heartache and tears, but today was a good day. We were able to hold baby Jesh for a couple of hours this afternoon and late evening. Most of that time he was actually awake (not characteristic of him) and he just looked at us with his sweet complection, as his eyes searched our faces. It was a very healing time for both of us.

We have been blessed with many tender mercies, and ask only for your prayers. We don't know yet what our schedule will be like for the next several weeks and are taking it day by day this week. We will also be posting some updates here as we move through this.

Thank you again for your support and prayers.

Love,

Tyson and Melissa

If you still read this!

So, for those of you who are still keeping track of us, we are here. This past Tuesday, Jan. 4th, Tyson and I celebrated our 8th anniversary. We kept it pretty low key with a movie and dinner. Really, we would have done more if we hadn't expected to be induced that day. But, after a non stress test and a wonderful check up, our doctor determined that Friday, Jan. 7th, would be the day. So, we are checking in tomorrow morning at 5:00 am to be induced. Hopefully we will welcome baby Frantz into this world sometime tomorrow. We think we have a girls name picked out but the boys name is really throwing us for a loop. Wish us luck, I am totally FREAKED out, and sorta excited about the events of tomorrow. We will post pictures and the gender when we can.