News

Sorry I don't update much, it's just too hard when I come home so tired. Joshua is doing great health wise. He is off the ventilator now but still is having his stomach contents drained via a tube through his nose because his intestines aren't quite healed enough yet to let the stuff go through. When the color of the drainage turns clear we should be able to move forward with feedings. He is ten days old now and still hasn't eaten anything, they feed him nutrients intravenously, but that doesn't help him with his hunger pains, so because of that he's pretty cranky. Sometimes he's just inconsolable and that's really difficult for me. I want to feed him so bad and he wants to eat so bad but we can't do it. Even when he can eat it'll be by tube so I'll be pumping only for the next 3-4 months. He will need another surgery at the beginning of December because during his first surgery they had to bring out stomas. Those are where they cut the intestine and bring the two ends outside of the body so when he eats, the digested food will come out the first end into a bag and then we re feed that into the second part. They need to control what goes into the lower portion because the colon never grew in utero because there was a blockage preventing anything from going down there. All of his parts are fine and healthy they just need to grow. So in December they'll go back in and reconnect everything and then they believe he will be perfectly fine. BUT.... Joshua is going to have to stay here until after the next surgery. So the goal is to get him home by Christmas. This was shocking news but everyone agrees it's best to keep him here under professional supervision in case any complications arise. Our schedule then is going to be a bit crazy for the next 3 months. Right now the plan for the 5 weekdays is to have me come down early in the morning and stay until about 3:30. Then I'll come home and Steve will come back down around 5 to spend the evening with Joshua. Then Steve will be home around 9 or 9:30. That way Noah and Abby will be able to stay home and have some normalcy to their day and hopefully after a few weeks of adjusting to the schedule we'll be able to add in some school work. Steve will also be able to do work that way. He and I are going to share the schooling duties for now. He can do math and spelling and maybe a few other things and then when I'm home in the evenings I can do the other subjects. We all have to be flexible during these few months and just suck it up and get through it. It sucks, I'm not going to say it doesn't, but what can I do? I have to do the best I can and just survive it. Then I'm hoping they'll be able to spend Friday night with a grand parent and most of Saturday so Steve and I can visit Joshua together and then Sunday I don't know yet. I'm sure the plan will need some adjusting, but that's the first draft of it!!

Today is the last day Joshua can have any visitors other than Steve and I. With the flu problems they've made the rules tighter and now siblings and grandparents are also prohibited. Everyone is really bummed by this because he's only been here 10 days and now visiting for family is over and they won't see him until December. I understand it because of course I do not want him introduced to any germ that can get him sick and make his healing take longer, but it's still hard. The kids seem to be ok with it, they're kind of hard to read right now though. We are going to make scrapbooks for them to keep adding to and I'll get pictures of Joshua all the time for them to add to it. That way they can see how he changes and grows.

Breastfeeding is going ok. I'm pumping pretty regularly and getting a good amount. It's hard finding the time to get over and pump. It's so silly that I have to put down my baby and go in another room to pump milk for him. But I'm doing it and hopefully everything will keep going well in that area.

I never really gave any details about the surgery and it would take a really long post to cover it all, so I'll just do a quick synopsis. Basically Joshua had something that his surgeons had never seen before. His intestines got a small twist which caused a blockage and then backup of meconium. This then caused a perforation in the intestine which allowed the meconium to leak out. The meconium then formed a cyst. These parts were all normal and what was not normal was that cyst sort of formed it's own cavity in his abdomen and everything that was supposed to be running through his intestines, just ran into the cyst. The cyst was as big as his whole abdomen and was attached to the bowel at the back and to the underside of the skin at the front. Basically the surgeon said it was like having saran wrap attached to his bowel and he had to very carefully peel it off. It took several hours to do that, but it was accomplished. Then where the perforation was, is where they cut about 4cm of intestines out (which is apparently a very small amount to lose) and then used those ends to form the stomas. The surgeon said the overall health of our baby was remarkable and how well he did during the surgery was awesome. He keeps reminding us that Joshua is going to be a normal boy very soon, we just have to finish healing, have the next surgery, heal from that and it'll all be over. I can't wait!!! Oh and we got the results of the newborn screen and it was negative for Cystic Fibrosis, Praise the Lord!!! One less thing to worry about!! Our surgeon is awesome!! In fact that's what Steve calls him, Dr. Awesome!! We feel very blessed that he was the one who did this because he even admitted that when he opened Joshua up, he didn't think it could be done, but he kept trying different things until it worked. He never gave up and eventually figured out what to do. Because this was so challenging, he has told us that Joshua is one of his favorite patients!! He even presented his case before all the other surgeons at their meeting. We can really see God's hand in everything that has happened. From the timing of my waterbreaking, which allowed his surgery to be at just the right time health wise, but was also the right time to get this doctor (any earlier or later and we would've had a different dr.) and all the other details just working out. It's truly amazing. Even though this is so difficult, we know for sure that we are blessed beyond words.

As far as me, I'm doing well. My pain had decreased a lot and I'm able to finally stand up without that excruciating pain. I'm still on blood pressure meds and that's been helping it a lot, but it still isn't down to normal range. I'm glad it's getting better though.

Yesterday we had Abby's birthday party at Build a Bear. It went very well and I think she felt really special which was the goal!! I can't believe she's about to be 7 on Thursday!! That's just crazy!! I kept worrying about how I was going to pull off the party. We had it scheduled 3 different times!! But luckily our family and friends are very accommodating and we were able to get it all pulled together in just a day!! I was able to run around and get everything done in one hour before the party. I had a lot of stuff already, but in that hour we got the balloons, cake and drinks for the party and then Steve got pizza. We set up a little party area down at the food court of the mall. It turned out really well. I'm so relieved it went well and it's over!!

Well I 'm hoping to turn this blog into sort of a daily journal for this time in our lives. So as long as I remember, I'm going to update daily with what happened that day. I want to remember this time and be able to share it with Joshua some day as well and if these past 10 days are any indication of how well my memory is going to be of this time, I know I better write it down!! So here's just a little update for today to remember (Sunday September 20), they are upping the calories on TPN (the liquid food) because he's still losing weight every day (just a little). They inserted the replogle line (the tube from the nose to the stomach) deeper and were able to pull out more of the stomach contents which seemed to make him feel a little better. The stuff coming out is still greenish although getting clearer, but it is still a high amount. He is having some bowel movements from the bottom portion, but nothing from the top portion yet. That's what we're really waiting for to happen so we can feed him. He's still pretty irritable. Last night was his first ride in the swing and he liked it for a bit. Today he got a music box and seemed to enjoy that some. He got his third wubba nub (pacifier attached to a little stuffed animal) today after I dropped one. Today's was the blue horse. He's having lots of visitors today as it's the last day for them to see him. We're on the list for a private room and will hopefully get that soon. Oh and he's still super cute!! That's it for now.

So hopefully I can update daily to keep track of everything for myself and for all of you to see how we're progressing. Thanks for all the prayers. We definitely need them!!