Day 72 - Lots of pictures!

Today is day 72 of Joshua's life and hospital stay. That leaves just 34 days until Christmas (it's getting close, do you have your shopping done yet?), and his hopeful homecoming. And we have just 8 days to go until surgery. We've learned who our nurses will be before and after surgery. We're happy with them! This week will go by fast too since we have just two regular days the whole week! Monday and Tuesday will be normal, Wednesday, Noah and Abby are coming for their visit, Thursday is Thanksgiving and Friday Steve doesn't work, so we'll have a different schedule. Then it's the weekend which is always quick and then it's surgery day!! I just want it all over. I'm so tired of the tubes going in his belly and things coming out of his belly. His nurse Dawn was singing "All I Want for Christmas is My New Bell-Ly" to him yesterday. It was so cute!! That's what I want too!!

Joshua weighs around 11 pounds 11 ounces. He is still growing, but a bit slowly. He's really growing lengthwise though. Every few days I have to "retire" another sleeper because he's too long for it!! I'm glad he's growing! A couple of days ago, our nurse let me change his ostomy bag. Now this is honestly a pretty nasty job, but I loved doing it. I got to actually feel like his "caregiver" instead of just a hand holder. I am allowed to change his diapers and feed him, which of course are important jobs, but I want to do it all!! I wish they'd let me do it all while I'm there. I'd love it. But they can't. I will be glad though when we don't have ostomy bags anymore!! Just 8 more days!!

These pictures are from last night. I took the kids outside in the sunset and took lots of picture with that beautiful natural lighting. Enjoy!

This one was when they were racing and poor Jasmine could only watch. As soon as we get a fence (hopefully Spring) we'll be able to let her run with them. She wants to so badly!
This one Noah took of me. I thought he did a good job! It's actually pretty flattering (probably because it's not a body shot!!)

These next pics are from our cousin Zach's 7th Birthday party. We went bowling. It was lots of fun. I played with Noah, Abby, Zach and Riley. I was the only adult and I didn't win!! Abby won!! She beat us all pretty bad!!

Well that's it for now. More to come!

Day 68 - Emotional Rollercoaster

Today is day 68 of Joshua's life and hospital stay, which leaves us just 38 days until Christmas and his hopeful homecoming. We have just 12 days until surgery! Joshua had a weight gain finally and weighs now 11 pounds 8 ounces! He's really growing!! Just an update on his feeds for the record: he is now taking 6 bottles by mouth of 45ml each containing breastmilk and a small amount of formula to up the calories. He also has a multivitamin with iron mixed in for one of the bottles and also prevacid mixed for two of them. He is taking 29ml per hour of a mix of elacare formula, ostomy output (what has been partially digested from the bottles) and pectin (additional fiber to help him absorb more water and have less runny stools) continuously via tube in his mucous fistula.



He is just doing really well and I'm very grateful for that. He is continuing to grow and become more "baby" like rather than just newborn. He's awake more and communicates with us with face expressions and body movements. We just a gym mat for the floor, so we can sit on the floor with him and play. I'm very excited about that. It gives us another place to interact with him other than just the rocking chair! They've given us lots of toys to use to play with him as well. He's just starting to notice toys. He just stares at them so far. But right now, staring means he likes it!



I'm feeling much better today. We've had some issues lately with the doctors sort of not really listening to our concerns, but today I got to speak with the resident for quite awhile and I was really impressed with how well he listened, how much he had researched our issues before coming in and how much he really seemed to care. My issues stemmed from a comment yesterday morning, when I asked why we were giving him the multivitamin plus iron and one of our doctors said "Because we give it to all the babies". I was just like, really, just because you give it to all the babies. So you don't test to see if a baby really needs it, or anything. Our main reason for questioning it was because the iron seemed to be upsetting his stomach and causing him to be very upset after taking it. So we just wanted to know how necessary it really was. We are just not the kind of people who do what everyone else is doing, just because everyone else is doing it. We do and everyone should question why is everyone doing it? Is there really a good reason or are we just following. I wish more people would question things, so that when we do we don't look so crazy to the medical professionals!!

But anyway, after my discussion today, I feel much better about it and realize that he needs to supplement for the fact that he's had surgery and will have another one and therefore has lost and will lose some blood which contains his newborn storage of iron. I just wish he could've been the one that answered my questions yesterday. It might've saved me some frustration! I am just so glad that whenever we do have problems, there is always someone to remedy it for us. They really do care. I really needed this today. We had one of our favorite nurses too, so it was a good day! We have a handful of nurses that are our "primaries" that we get anytime they're working. We have two for daytime and two for nighttime. We don't always have them because of schedules and things, but it's so nice when we do. They know Joshua, they know what is going on with him and what care he needs, they know Steve and I and what we do with him. I don't have to explain to them for the 100th time how his care is usually done, when we feed him, the schedule Steve and I do, anything. It's just so nice. Plus we've gotten to know them enough that we can just have normal conversations with them about families and travel or whatever and it's nice to have that. So we love our Dawn, Ashley, Jane and Elizabeth!!! There's a couple of others that we've had periodically that we really enjoy too especially Amy and Beth. But we don't get them very often.



So I'm feeling pretty good right now. I know that tomorrow, or the next day I might be down again, but I guess that's the nature of the beast, or so to speak. Ups and downs come with the territory. And every early morning or late night, is one step closer to getting him home and we're really getting close now.



So in other news, we're doing pretty good. We have some of our Christmas shopping done. We're trying to get it all done by the surgery since we don't know how crazy our schedule will be after it. It's been so fun buying for three kids this year!! Tomorrow night is another basketball practice for Noah and Abby has cheerleading Sunday nights. She had her little meet and greet last weekend and loved it! I'm glad she's having fun with it. I can't wait to see her in her little uniform!! We're also planning our Disney trip. We can't decide if we want to go earlier in February or wait until the beginning of March. I CAN NOT WAIT!!! The kids found a caterpillar today and put it in our butterfly tent. They named it Pilly and gave it lots of leaves and grass to eat and they can't wait to see what happens with it.



Well here's a couple of pics of Noah and Abby. Abby's picture is from a week or so ago when we had been watching "Say Yes to the Dress" and she asked me about my wedding dress. I got it out to show her and then suggested she try it on!! She loved it all!! She's even wearing my veil. She's so beautiful! I showed the picture to Daddy and he said yes she is beautiful, but she's never getting married!!! He doesn't want her to leave!! And Noah's picture was Sunday. I just thought he looked so cute in his outfit for the day and snapped a few shots of him!! They both look so grown up!! Oh where did the time go??

Oh, and I almost forgot, Noah and Abby will get to visit Joshua!! I think we're scheduling it for next Wednesday! We had to get it approved from the "higher ups", but they finally agreed and I can't wait to see my three babies together again. It's going to be awesome!! Well that's it for now. I'll update again soon and I have pictures of bowling to share!!

Day 66 - The "Are We There Yet?" Edition

Today is day 66 of Joshua's life and hospital stay and we have just 40 days left until Christmas! His surgery is 14 days away! Joshua is still weighing right around 11 pounds 4 ounces. The doctors and nutritionists and playing around with adding things to feedings and upping the feedings to try and get him gaining more weight. At least he's not losing weight. But the more weight he gains, the healthier he is and the better his recovery will be after the surgery. So we're hoping we can get him up at least another pound in the next two weeks.

Other than the feedings, he's pretty much not doing anything else new. We're just hanging out until surgery. This weeks been a bit rough. I know we're getting so close now, I know that. But it's been so long that we've been doing this and it's just really starting to wear on me, Steve, Noah and Abby and Joshua too. I'm so tired of all that's involved in being at the hospital everyday and no matter where I'm at, one or two of my kids are not with me. I'm so tired of the 45 minute each way drive. I'm tired of pumping breastmilk. I'm tired of being watched all day long as I just try to care for my son. I'm tired of the Doctors always thinking they know what's best for him and I don't. I'm tired of who are nurse is for the day, being a determining factor of how my day is going to be. I'm tired of annoying nurses (not all are). I'm tired of not seeing my husband except for about 45 minutes at night. I'm tired of getting up so early (I'm not a morning person!). I'm tired of not having "family time". I'm tired of never being able to move my baby beyond the 6 foot by 6 foot square around his crib that the cords and tubes will reach (I'm sure he's tired of that as well. I know he'd love to get out and see more). I'm tired of coming home from the hospital exhausted and still having so much to do. I'm just tired. I've tried so hard to be a "trooper" and keep my mind in a positive attitude, but after awhile it just really wears on you. I know all 5 of us are "tired" of so much. I told our nurse yesterday (one that's really good and we love) that after we get home, I just want all of us (including the dog!) to lay in our bed for like 4 days. It might be crowded, but I just need that constant together time and relaxation right now. I can't wait to tell that hospital goodbye.

Sorry, I needed to keep it real!! It's not all "we can do this" "only 14 more days" "we're almost there". It's rough, I'm not going to lie. But alas, the end is in sight and I know that no matter how hard it is, we are all in God's hands and he is taking care of us. That is the only thing that gets us through this and in one piece. He's using this situation to build us up. We'll be closer and stronger than ever after this. I already feel some of that happening. We've never been a better "team". We're all doing our parts and it's working. And it's bringing us all so much closer to Him. I'm talking/praying to Him all day long. I really want His glory to be seen in our situation and I'm just hoping that is the case.

Well anyway, today Abby and I added our Joshua sticker to the back of the van. It's very rare that I have the car while at home, so since we did today (we have to go to a Birthday party) we added him. I can't wait until those stickers are seen driving through Kentucky, Tennessee, Georgia and Florida on our way to Walt Disney World!! Early spring, that's the goal!!

Day 61 - 2 months!!!

Happy 2nd Month Birthday, Baby!! We all love you!!

Today is day 61 of Joshua's life and hospital stay. We have 45 days left until Christmas and Joshua's hopeful homecoming. We also have just 19 days until surgery!!!!! Today is Joshua's 2nd month Birthday! Wow I can't believe he's already 2 months old! That's 1/6 of a year!! Already, I can't imagine our lives without him. He is such a sweet and wonderful baby. I can't wait to share him with his siblings, our family and friends and the whole world!! He is such a joy and I am so blessed to be his Mommy. I don't know how I deserve 3 awesome kids, but somehow God decided to bless me with them. I'm so grateful.

Joshua is now about 11 pounds 4 ounces. And as you can tell from the pictures he got his tube out of his nose!!!! That happened on Saturday. They had lowered his continuous feedings so low, that his surgeon said it was just silly to leave that tube in, so they took it out. He now has 6 feedings a day of 45 ml each. He is allowed to breastfeed for one of those times, if the schedule allows. We've been able to nurse everyday but today, since Friday. Today was just a little crazy, so we didn't get to, but he's doing awesome with it. He latches on like he's always done it. I can't believe how well he does at it. We did a pre and post weight Friday to see if he was actually getting anything and he was! He drank 22ml in 6 minutes!! The nurses and therapists are astounded at how well he is doing.

He is still getting the continuous feeds into the bottom portion. That's a mix of the ostomy bag output and elacare formula. He's probably going to stay at where he is until surgery. His surgeon doesn't want to "rock the boat", so we're just going to stay where we are for the next 19 days. Wow, 19 doesn't seem so long at all!!

He had his 2 month immunizations today. He was already upset from his nurse assessment, so the shots didn't seem to bother him a ton. Daddy was with him during them. I was glad, I knew that if I was there, I'd be a crying mess. I've always cried at the shots. I hate seeing that look in their face when it happens.

I watched the Bengals game with him this week. We both had jersey's on!! One of the surgeon fellows that has been with him since his surgery, always calls Joshua the Bengals good luck charm. It's so cute!! So here's a couple of pics of us watching the game.. Who-Dey!!!

Is he getting annoyed with the camera already? He needs to get used to it, just ask Noah and Abby!!!

Just a few more pics of my sweet little one. He's so much cuter without the tube on his face! I know he's pretty happy about it being gone as well, especially since he can now have his hands free of mittens!! He is a real happy baby now!!

We have a VERY busy weekend coming up. We have two cousin birthday parties. Both cousins are turning 7! We also have Lowe's Build and Grow, which is the one the kids have wanted to do the most (Jimmie Johnson's garage), a cheerleading meet and greet for Abby and a meeting for Social Security (all babies are eligible for Social Security and Medicaid after they've been hospitalized for more than 30 days) where I have to fill out all the paperwork and have an interview to get that process going. So we'll all be running to this and that and making sure the baby has a parent with him as well. Hopefully it'll all work out. I know it will make those two days go by fast!! Plus it's Steelers week again!! Go Bengals!!

So that's it for now. We're just hanging out until surgery day. I'm sure I'll have lots of fun pictures to share from our crazy weekend!!

Day 56 - My 3 Pumpkins!

I smuggled a little pumpkin into Joshua's room to get a picture of him with it. I bought 3 little pumpkins all 3 different sizes and took the kids pictures with "their" pumpkin. It's the closest I get this year of real pumpkin patch pictures. It'll do for this year!

Today is day 56 of Joshua's life and hospital stay, which means we have 50 days left until Christmas and Joshua's hopeful homecoming. He finally hit 11 pounds yesterday!! At 2 months Noah weighed 13 pounds 6 ounces. Both boys were born around the same weight of about 8 and a half pounds. So Joshua is still a little behind in weight, but the fact that he's gaining is great news!! The amounts he is being fed change daily. Today he was having 6 bottles by mouth each at 20ml, then 6ml per hour of continuous feed into the top portion (for each bottle the continuous feed is off for an hour, so six hours total for the day) and then 28ml per hour of continuous feed into the bottom portion which is a mix of the output from the ostomy bag (partially digested breastmilk and stomach juices) and elacare formula. All of the upper feeds are only breastmilk. Tomorrow, they may move the bottles down to 4 or 5 and move up the continuous upper amount. We'll see.

He is smiling now!! It is so cute. He just coos and makes this sweet little sighing sound when he smiles. And he gets excited and moves his arms all around. It's so sweet. Today I spent a lot of time talking to the nutrition lady about all the different feed options and she told me whenever she is discussing Joshua with surgeons, doctors or whoever, they refer to him as "big boy" because they're so used to working with little preemies and his a big normal sized baby! She said it's kind of fun to have a normal sized baby to work with. It feels so good to know that he's normal other than this little problem, that just happened by chance and will be fixed.

I like to do all sorts of things in my head that make the time seem to go by faster. For instance, saying I only have 3 more Monday's until surgery, seems shorter to me than 3 weeks. So everyday, I'm like yay, only 3 more Thursday's or whatever the day is!! I also keep tally marks on a dry erase board in his room and break them up into rows. So now we just have four more marks to finish the next row and then one more row after that until surgery. I know, it's strange. But it helps me.

The kids start Upward next week. Noah is playing basketball again and Abby is starting cheerleading. It's crazy to add more things to our schedule, but I really don't want any of my kids to miss out on something because I can't handle the schedule. Daddy and I both feel like it's important to get them involved in Upward sports, so we'll do whatever we have to do to make it work. So it's practices until early December and then the games begin and go through January. So hopefully it'll work out and everyone will be happy.

Our 9th anniversary is next week. We always go to Outback Steakhouse for our anniversary dinner. We started it on our honeymoon in Maui. Every year we go to a different location. We've been to Hawaii, Massachusetts, Texas (2 different locations), Kentucky and Ohio (3 different locations). We always take a picture during the meal and I have a scrapbook just for those pictures. It's cute to see us and the kids grow and change. I want to wait until Joshua can come with us to do the dinner. I want all of my kids in the picture. So maybe sometime in January, we'll get to go out and do it.

Well I guess that's it for now. Noah, Abby and I are watching Survivor. Then it's bedtime for them and I have to pump and go to bed myself. I'm tired! Goodnight!

Day 53 - Halfway!!!

Today is day 53 of Joshua's life which leaves just 53 days until Christmas - halfway baby!!! We also have just 27 days until surgery!! Joshua is hovering right at 10 pounds 14 ounces. He is around 21 1/4 inches long.

I thought I'd do another day in the life post, but a more typical day. Today was like this:

• Woke up at 6, got dressed in the clothes I set out last night, pumped milk, grabbed lunch I packed last night, left.
• Drove to hospital, got new security bracelet, scrubbed hands, signed in, filled up water bottle, can into Joshua's room, said good morning to him (he was sleeping in his swing), put away the clean clothes I brought for him, marked off another day on the tally board, sat down in the rocking chair and got him out of the swing.
• Held him and listened to music from my Iphone while we waited for the doctors to come by for rounds.
• Doctors came, we discussed how his ostomy bag leaks a lot and has to be changed, they had no real solutions for that. Also the resident suggested we pull out the PICC line since we're no longer feeding him the liquid feeds through it. They agreed to pull it out! YAY!!
• His nurse came in to assess him, I pumped while she did that.
• After that, I fed him his 15ml bottle while the speech therapist watched. She praised him for his interest and coordination with the feeding and then proceeded to praise him for just being very "appropriate" in all of his development. And she said that was a testament to how much Daddy and I are with him, because the babies who don't have parents there as often, don't do as well in these areas. I'm so glad to know we're making a difference.
• I held and rocked him for awhile.
• He went to sleep and I snuck out to eat lunch.
• Came back and he was being assessed again.
• After assessment, his nurse removed the PICC line. One less tube to worry about!!! I helped calm him and keep him still during that. That's my job for nearly every procedure!!
• I held him for awhile after that and gave him another 15ml bottle.
• He was a bit fussy and was tired, but wouldn't go to sleep. I finally got him to go to sleep.
• I pumped again while he slept in bed.
• I held him for awhile more.
• Time to go, I smooched all over him and then swaddled him and left him sleeping in bed.
• I signed out and left for home. I had to stop for gas along the way home.
• Got home, went through the mail with my husband and then kissed him goodbye as he left to go back to Joshua.
• Hugged the kids and heard about their day.
• I found that Abby has a fever blister, so I started her on the medicine she's been previously prescribed for that. She has some left that will get us through tonight and tomorrow until I get to go pick up her refill.
• Started dinner: pulled pork sandwiches (used pork I had made and frozen before Joshua was born), baked potatoes and applesauce.
• Ate dinner with Noah and Abby.
• We decided to make chocolate malts for desert. We drank those while watching Iron Chef America, a family favorite!!
• Pumped milk again.
• We started schoolwork after that. We did English and Geography. Abby had an English test and another assignment to do, Noah had an English review to do. We played a Geography game, went over the countries of North America (including Latin America and some of the Caribbean Islands), listened to music from Mexico and read a chapter of Cameron Townsend, a book about a missionary to Guatemala. I did a review of money/coins with Abby.
• I did the dishes and emptied the trash while they worked on English.
• Noah took a shower while Abby finished her work.
• We played two games of UNO together.
• Abby took her shower, I helped her with her hair.
• I took my shower.
• I brushed Abby's hair and my hair.
• We read a chapter of Farmer Boy (we're reading through the Little House series, this is the 3rd book in that series).
• We prayed.
  I gave Abby another dose of medicine.
• Tucked both kids into bed and kissed them goodnight.
• Came downstairs and brought down my clothes for tomorrow.
• Typed this post!

Now before bed I still need to:

• pack lunch for tomorrow
• pump milk
• discuss Christmas gifts with Daddy when he gets home (should be in the next 20 minutes or so)
• set out cleaners for the kids' zones tomorrow (zones are what I call their chores, tomorrow they're doing the bathroom sinks and toilets, which is actually something they love doing. I don't know why, but they love it!!)

So that's a normal day for us. It's busy and kind of crazy, but it's working and we're getting closer and closer to those much awaited days of surgery and coming home. WE CAN DO THIS!! Well I'm off to finish my list so I can get to bed, I'm tired!!

Day 51 - Gifts and Weekend Fun

Today is day 51 of Joshua's life and hospital stay which means we have 55 days until Christmas and 29 days until his surgery. Under 30 days until surgery!! Yay!!

He is hovering just under 11 pounds now. Sometime in the next day or two he should that 11 pound mark. He is now "re-feeding". That means we feed him the breastmilk into the nasal tube as before, and then the output from that into his ostomy bag is then added to the elecare formula that goes into the lower half. That way he gets the breastmilk through his whole system, plus all the stomach juices are put into the bottom part to help digest the formula. He's been doing this for a few days now and he's gaining weight and his poops from the bottom are more solid and that makes the doctors happy. They upped the amount of calories he's getting in the formula to 24 and he's getting 28ml an hour of it. Because he's doing so well with that, they decided to wean him off of the liquid iv food and today they finally took it off!! Yay!! One less tube to worry about!! He still has to keep the PICC line until surgery because it's a difficult procedure to put in the line, but it's capped off now and doesn't have a long tube connected to it.

He's up to 4 bottles a day with 8ml in each one. Daddy and I each do 2 bottles a day. He has spit up a few of them, but overall he's doing well with them and really seems to enjoy that time of day. 8 milliliters is only 1.6 teaspoons so he drinks it very fast, but it's so nice that he's getting daily doses of milk by mouth and using all those drinking skills so he doesn't ever lose them.

Oh and to explain the craziness of the photos!! I wanted to show the slippers and stuffed animal that he got as a gift yesterday. They called it a Halloween gift, but it doesn't really seem like a Halloween gift, so it's just a gift!! So he got those turtle slippers and matching stuffed animal and a copy of the book Guess How Much I Love You. I thought that was nice! The gift bag had a tag on it that said part of it was funded by the Ruth Lyons fund, so if you've ever donated to that, thank you!! And I know whose getting a donation from us when all of this over!! They really are sweet to us there. They do their best to make a tough time, easier. He seems to be enjoying his gift, with that cute little smile!!

I was in the waiting room eating lunch yesterday and I chatted with one of the baby's grandmothers. She was telling me why her grandson was there and she mentioned the conditions of a few other babies she knew about, and it just instantly made me realize how very blessed we are to have a completely healthy baby that's just waiting for his reconnection surgery and then he'll be just a normal little boy. These baby's stories would just break your heart. They have missing parts, parts in the wrong spot, parts that just don't work, are born weighing very little (even just 1lb). Being in a private room, you forget how bad the other babies are out there because you never see them. It's just so sad. But thankfully those babies are in the best place for them. Without hospitals like this, they probably wouldn't have a chance at all. It's still just really sad though.

But the rest of us are doing fine. Tired, but fine. I took Noah and Abby to a movie lat Newport last night. We saw Cloudy With a Chance of Meatballs. I really liked this one. It was funny and cute. Much better than that awful Where the Wild Things Are. We also had dinner at Johnny Rocket's where the kids got to play a song on the jukebox at our table. We only heard Abby's, it was "Honeycomb" a song I didn't know. I knew nearly every song on the jukebox and she chose one I didn't know!! Noah chose "Please, Please Me", but they didn't play it before we left. Instead they started playing "Thriller" which drove Abby crazy because she's scared of it!! We were almost ready to leave and they played it twice in a row!! It was funny!! After dinner we stopped at a candy store and a book store and then we went to the movie. Today Noah had a Lego Club meeting at the mall and then both kids had to go to church for evaluations for Upward basketball and cheerleading. They also had to be fitted for uniforms. I think that starts in December. I hope we can work it all out!! The games don't start until January, so that shouldn't be a problem. So Daddy took them to their things today and then he took them to the grocery. I think they had a nice weekend. They got time out with both parents.

A pic from our "night out on the town!!"

Well I guess that's it for now! We're hanging in there and just getting through it. It'll be over soon and we can get on with our lives!

Day 47 - Unclothed

Today is day 47 of Joshua's life which leaves just 59 days until Christmas and his hopeful homecoming and also leaves just 33 days until his surgery! The days sure are whittling away, slowly but surely! I took a picture of Joshua unclothed, just to sort of record how he looked all hooked up to everything. Someday I know I'll want to see it again and to show him what it was like. It's not pretty. But I like to think of it as signs that he's healing and getting better, rather than signs of how sick he is.

Joshua is mainly just working on gaining weight at this point. All parts are functioning as well as the Dr's expect them to, they just want him to stay healthy and gain weight until surgery day. He's up to about 10 pounds 8 ounces now. He's taking 2 bottles of 8 ml each per day. Sometimes I can substitute one bottle for about 5 minutes of breastfeeding. We've had one really successful nursing session and 2 not so successful ones. He loves the bottles and the one time he successfully nursed. The speech and occupational therapists (two really nice and sweet girls) are very impressed with how well he does with the feedings. He definitely hasn't lost the know how when it comes to eating! These are all wonderful things that will help the healing process after the next surgery, go much smoother and quicker. Another thing to be grateful for!!

He got a bigger crib. His nurse said he was way too big for that tiny little bed!! So he got a new one and he has a bin full of little toys, a mobile, a swing, a bouncy seat, some books (ours from home), a big mirror to admire himself in and several paci's!! He's got quite the loot going on!!


He's working on social smiling, maintaining eye contact and head control. He's moving along well in those areas and is very alert and attentive. He does not like to be assessed by the nurses every 4 hours (who would!) and lets everyone know of it!! He likes his swing and sitting up in my lap. He likes to see his world!! He has been staring at his mobile a lot lately. I guess these are all normal baby activities, but in these situations, everyone wants to be sure they don't get "delayed" or whatever, so they're always talking about it.

Yesterday someone brought by a little orange onesie that said "This is my costume" and left it in our room. We weren't sure who it came from, but we found out that whoever it was from had brought one to all the babies. We also received a hand knitted little blankie the other day. These are so nice, but it reminds me of how we are now the ones people feel bad enough about to donate their time and money for. You know what I mean? It's very easy to sort of forget how sad this situation kind of is for us because it's just our life and we're living it, but if someone mentioned this story to me about someone they knew, I'd feel terrible for the family and if they asked me to donate something, I'd do it in a heartbeat. You know? It's sort of hard to explain, but it's just hard being the ones that are the recipients of peoples kindness and generosity during bad times. I don't want to be in such a situation like that. But nonetheless, I am and I am grateful for the kindness and generosity of so many people.

There are lots of babies there that are much sicker and have far worse prognosises than we do. Nearly everyday we hear the alarm of a baby who's in dire need. It's this horrible loud alarm and they announce the location of the baby so the response team can respond. I hate that time. I tear up nearly every time and instantly pray as hard as I can for that baby. This is the place where all the really sick babies born at all of the hospitals in Cincinnati come. There are happy stories of recovery and there are sad stories of never leaving this hospital. It's really hard being there and witnessing all this. I'm just so grateful that we're just passing through. It seems like forever, but our stay will end and we'll go home and begin our life as a family of 5 very soon. I can't wait. But I just ask everyone to pray for all these babies. They all need it.

Well I'll leave with a picture of my baby after I dressed him. His outfit says Whooo's A Cutie? I am!! He definitely is!!

Day 42 - We Have a Date!!

Today is day 42 of Joshua's life which leaves 64 days until Christmas and Joshua's homecoming. I bought him two new sleepers and this picture shows my favorite. I love how the sleeves are different, so it looks layered. I also love how it's not just ordinary baby colors. I love it. He however doesn't really care!! He's sitting in the swing and it was nighttime when I took the picture and he was not happy about me flashing him with the camera!! He needs to get used to it, it doesn't ever stop, just ask Noah and Abby!!


So the big news today is that we got a date for the surgery!! We are scheduled for Monday November 30 at 12:30pm. That's the Monday after Thanksgiving. I'm so excited about it! It just feels so much sooner saying it's in November than December, even though I realize it's the last day of November. So that means we only have 38 days until surgery and then we have 25 days afterwards to heal and make it home by Christmas. His surgeon is still very confident that we'll make that deadline. I hope he's right!


The medical update for the day is that he's over 10 pounds now, weighing in at 10 pounds 3 ounces!! Last night he vomited a lot, so they decided to temporarily suspend the feedings into the top portion. They believed his vomiting was because he was having a backup in the intestines since he didn't have the tube in there anymore. So this morning, the surgeons stopped by and put the tube back in and immediately got rid of lots of stuff that had been stuck in there. He's supposed to be starting the feeds back up sometime this evening. So with that going on, we couldn't do any mouth feeds either by bottle or breast. Maybe tomorrow or the next day. He's lower feeds were increased to 26ml and he still seems to be handling that part well. The surgeons and neonatologists are very clear that they're not really concerned about the problems he's having at the top. They believe it can all be fixed either by waiting now, or during the surgery. So I'm trying not to worry either, but it's hard when your baby has been vomiting bright green and yellow. It's just not something I'm used to. But I'm trying to listen to them and keep their expertise in mind.


Well that's mostly it for now. I need to go, the water is boiling for spaghetti and the kids are hungry (so is Mom!!). Here's a picture from the Meijer pumpkin patch. I bet if I didn't tell you, you wouldn't know it was at Meijer!! Such cuties!!

Day 41 - My Sweet Boy

Is that boy not the cutest thing you've seen?? Seriously, adorable!!


Today is day 41 of Joshua's life which means we have 65 days left until Christmas and Joshua's homecoming. I'm sorry I haven't posted in awhile. I wanted to Monday night, but ran out of time after cleaning and laundry and lessons. And then last night I couldn't get blogger to let me post pictures, and I wanted to wait until I could post them. So anyway, here's the update.


Joshua is right at 1o pounds now. He is taking 25ml per hour in his lower portion. He is still taking 6ml per hour of breastmilk into his nasal tube that goes into the intestines. Yesterday he had his first bottle feed. They shut off the continuous 6ml for an hour and let us feed him that 6ml through a bottle. He really seemed to love it. He sucked it down!! Today he's allowed two feedings that way. Daddy did one this morning and I'll do one later when I get there. They may even allow him to actually breastfeed tomorrow. I'll have to pump first for almost my normal amount of time and then let him sort of finish it. He can't get a whole feed worth, it'll be way too much. I'm not holding my breath on that, because things change so quickly, but I would love to be able to do it.


He still has a reflux problem and probably will for awhile, so he still spits up a couple times a day. Everyone believes this is all normal and they see it a lot in babies. He is now taking Prevacid for it. It doesn't seem to be causing him too much pain or anything, so that's good.


He's going to be 6 weeks old tomorrow. I can't believe it!! It has gone by really fast. We only have another 6 weeks until his next surgery. Actually, Steve talked to them today and he's being scheduled in the next day or so. It could be anytime the week of Thanksgiving or the week after. I'm hoping for sooner rather than later, but I'll take what I can get! His surgeon is very confident that Joshua will only need about 3 weeks to recover and get out of the hospital and I'm so hoping he's right. Even if it's Christmas morning when he comes home, I'll be thrilled!! We'll just have to wait and see I guess.


Noah and Abby are doing well. They're coloring scenes of the prairies right now as I type. We just finished our map work and singing for the day. Daddy is doing really well with the spelling and science work. They are learning tons and having a good time as well. I'm proud of all of my kids. They are all dealing with their situations as best as they can, and I'm grateful for that. I took Noah and Abby to a pumpkin patch last Friday. Ok actually it was the straw and pumpkin display outside of Meijer, but hey who cares, we picked a pumpkin at least!! We usually spend lots of days in October at various farms and festivals and this year we haven't been able to do that, so I made them pose in the pumpkins at Meijer and I didn't care!! Next year we'll do it right again!


We got our van back and I'm so glad. It was a large bill, but it was worth it to have it back and in good shape. Hopefully it can keep up with this crazy back and forth to the hospital schedule (a 45 minute drive each way, done twice a day) until we're done with it.


Well that's about it for now. I need to finish a few things before it's my turn to head to the hospital. I thought I'd leave you with a picture of me and my baby. I've been wearing my glasses more lately. I just found them recently, they had been missing for a long time. I'm hoping they'll help with the headaches I've had lately, and so far they seem to be. Well anyway, have a great day!!

Day 35 - 5 Weeks and a Smile!!!

Today is day 35 of Joshua's life which leaves just 71 days until Christmas and his hopeful homecoming!!

Just a quick update today, it's late already and I still have a ton to get done before bed. Joshua is still hovering in weight right around 9 pounds 10 ounces. Sometimes a little more, sometimes a little less. They're upping his feeds (lower portion) one ml every 8 hours now. When I left this afternoon, it was set at 19ml per hour. The max is about 27 or 28ml per hour, unless he doesn't tolerate it. So far he's doing good with it.

His vomiting has lessened, and is no longer a huge concern. He did have the tube in his nose replaced and put in further into the intestines to give the stomach a break. We had to go down to radiology to have it put in. It was not fun for either of us, though I'm sure much more rough for him. I try hard to hide the tears in these situations because the room is always filled with medical professionals and I don't want to seem silly, but it's so hard for me when he is that upset. It just kills me. So, now he has to wear mittens on his hands all the time, because he's really good at sneaking a finger or two behind the tube and pulling it out of his nose. I know neither of us wants to go back down there and insert it again, so we're taking precautions to prevent it from happening. He doesn't love the mittens, but it's better than the alternative.

He has one small infection on his incision line on his belly. They said it's a suture that's become infected and that it's not a big deal because it's just at the surface and not further down. It's being treated and is already looking better.

Our car should be ready tomorrow. We ended up getting a new alternator, new tires and a belt replaced. That's a big bill!! But we rely on our car so much, so we had to get it all done.

We're all doing ok. Daddy and I are pretty tired. This is such a hard schedule, but we're surviving and that is what's important.

I was snapping some pictures of Joshua today and just happened to catch him with a smile!! He was asleep, so it wasn't a happy smile, but it's cute nonetheless!! He is starting to recognize mine and Steve's voice and stops crying or turns his head when he hears us. It's so cute. He is such a little sweetie, just like Noah and Abby!! I still can't believe I have 3 kids now! It's hard to really get a sense of it when they're separated. I don't have all 3 at the same time. I can't wait until I do!!

Well have a good night. If you have any spare change lying around, buy a Bengals ticket for this Sunday so maybe they'll sell out and we can watch it on t.v.!! It's one of the things we look forward to every week and would be such a bummer if we couldn't watch!!

Day 33 - A Day in the Life

Joshua and his friends! Mickey from us, Floppy Dog from Mamaw and Papaw and Don from Abby!

Today is day 33 of Joshua's life and hospital stay which leaves us 73 days until his hopeful homecoming.

I thought it would be interesting to type out what my day was like yesterday because it was one of those days!!

• 6:20 Woke up, went downstairs and dressed in the clothes I set out the night before. Pumped milk. Grabbed my lunch from the fridge that I packed last night. Headed out.
• 6:55-7:45 Driving in the morning traffic. Got a new security bracelet. Went upstairs to the NICU floor. Scrubbed my hands and signed in.
• 7:50-8:15 Held Joshua's hands and patted him. Talked to him and read him a book (Guess How Much I Love You) while waiting for the Dr's to come by.
• 8:15 The surgical rounds came by and we saw the doctors. We also heard that he was up a little in weight after being down the day before. He's now around 9 pounds 10 ounces. We discussed how much he's vomited lately and decided to move his nasal tube further down past the stomach into the intestines and hopefully that'll relieve him some. They said they'd try it in the stomach again soon. Also learned that they are going to give him his Zantac directly and not through his liquid feeds anymore to be sure he's getting a full dose.
• 8:30-9 Calmed and comforted Joshua as he had his nurse assessment. He hates being bothered by the blood pressure cuff, thermometer, stethoscope, diaper changing, etc..
• 9-9:30 Sat and held him in the rocking chair
• 9:30 Pumped milk
• 10-11:45 Sat and rocked him. Talked to him. Watched a little tv while holding him. He had his feeds changed.
• 11:45 Went to waiting room to eat lunch and call Daddy.
• 12:15 Came back in time for next nurse assessment. I decided to pump milk while she tended to him. It makes it a little easier for me to pump when he's being watched, because I'm always worried he's going to get upset and scream while I'm attached to the pump and can't get to him.
• 1:00 Got a call from Daddy that said he had won free tickets to a preview of the movie Where the Wild Things Are and we decided I would take the kids while he stayed with Joshua.
• 1-3 Snuggled and rocked with Joshua.
• 3:00 It was time to leave, but just at that time they decided to try and put the tube down further, so I stayed longer. He HATES anything done to the nasal tube and he didn't like this either. They thought they got it down, but we later found out it wasn't in the right spot. I stayed until he was calm and resting again.
• 3:20-4 Signed out, drove home.
• 4-4:15 Got home and pumped milk right away. Then we all 4 left.
• 5:00 Dropped Daddy off at the hospital and drove to Newport. While Daddy was with the baby, the did an x-ray and saw that they didn't get the tube in the right spot, they tried again, x-rayed again and it was still wrong, so they waited until the next day to do it down in radiology.
• 5:30 We arrived at the theater and sat down in the long line to eat our "dinner" - popcorn, nachos and cheese and candy!! I know, isn't that terrible!! At least we don't do that often!!
• 7-8:45 Noah, Abby and I watched the movie. I thought it was just ok. It had some funny parts and some touching parts, but overall I thought it was a bit much. Noah liked it, Abby didn't really care for it. It had some scarier parts that she was not fond of at all. I didn't like how the music was very loud and a bit overbearing and they said a few words I didn't want my kids to hear and I didn't care for how disobedient they showed Max being especially with no consequences. It was also very "artsy" and I hated the camera work they did (you know, like when the characters are running and the camera is running and bouncing along with them, it makes me dizzy when the camera does that). At least it was free and I did enjoy having some time out with my two older babies!!
• 8:45-9 We drove back to the hospital to pick up Daddy
• 9:00 We turn at the stoplight right in front of the hospital just as our car decides to go dead. The gas pedal wouldn't work anymore and we coasted into the lot and were able to park. Then as we stopped, the radio turned off, then the lights turned off and then the car was completely dead. Daddy came down and we talked to the security guards. They came back and tried to jump us, that didn't work. So we conversed with my Dad and decided we'd need to have the car towed. We ended up having Steve's mom come down and pick us all up and our car was towed to the dealer. We were so blessed to have this happen where it did, because just 4 minutes before it happened, we were still on the highway. And we were blessed to have a ride home and she's even let us use her car until we get ours back which will hopefully be Thursday after it's $700 fix!! Thanks Grammy!!
• 11:30 FINALLY arrived home, put the kids to bed, pumped milk, packed my lunch for the next day, set out my clothes for the next day and went to bed at 12!! I was so tired!! And to think, in just 6 hours I got to get up and do another crazy day!!

Can I just say that when this is all over and Joshua is clear for traveling, I am dreaming of getting away from everything and taking my husband and three kids to a beach somewhere and just sitting. Sitting on the beach with my family and thinking of nothing but them. We will all need this time to get used to our family of 5 all together and to rejuvenate. Aaaah, I can just imagine. So when we finally get there, don't call, 'cause I ain't answering!!!

Day 31 - One Month Old!!

Today is day 31 of Joshua's life and hospital stay, which leaves us 75 days until Christmas and his hopeful homecoming. He is now a month old. He's gone from a newborn to a one month old! He's up to about 9 pounds 7 ounces now. He's getting 14ml per hour of formula in his lower portion now, which is halfway to max feed and he's getting 3ml per hour of breastmilk into his belly. He's had a few issues with vomiting lately, but they've x-rayed and checked him and everything inside is fine, he just may not be used to having food in his belly and is adjusting to that. He does have quite a bit of reflux as well, so that could be contributing to the problem too. He's been getting Zantac in his iv liquid feeds for awhile now, so he's not feeling too much discomfort. He is having longer and longer alert and awake times now. He's going up to about 3 hours of awakeness at a time now and then sleeping 2-4 hours between. He's been sleeping most of the night and only waking for short periods and when the nurses come and bother him. Overall, he's doing really well and is continuing to gain weight and heal. He's a very strong boy.

Steve and I switched places this weekend and I'm home during the day and he's with the baby and then I go to the hospital in the evenings. Yesterday Steve's Mom took the kids and I to Lowe's so we could do another build and grow. They made a ball toss game. We were glad that they were able to do that. They love making those things.

So today I'm typing while I watch the Bengals with the kids. I have dinner already made, it's chili in the crock pot. I have my 2nd load of laundry in the dryer and that's all for the day. I need to write the kids assignments for the week on their white boards and do the dishes. I also need to pump 2 more times before I go to the hospital tonight. I'm showered!! Woo-hoo!! I also want to pick up the trash around here if I have time. I also like to get my clothes and lunch ready ahead of time for the next day, so I'll do that before I leave since I'll be home late tonight and then have to get up early tomorrow.

Here's two pics of Noah and Abby from yesterday's build and grow. I think they look so cute!! But I think they all 3 look cute!! Joshua's picture shows the first outfit I bought when we first found we were pregnant. I think it's super cute and I love that it says I love Mommy!!! Daddy thinks it's a little girly though. Oh well, I love it anyway!!

That's it for today. More to come soon!!

Day 28 - 4 Weeks!!!

Today is day 28 (4 weeks, can you believe it????) of Joshua's life which leaves us with 78 days!! Yay, we made it under 80 days now!! That means we're 1/3 of the way to the surgery date. Just 8 more weeks to go until then and then a few more weeks of recovery after that and then we'll be home. I can't wait!!

I know it's been awhile since the last post. I've been busy during my at home time with lessons with Abby and Noah and trying to make sure we have clean dishes and laundry. Plus I'm still pumping at least twice and sometimes 3 times after I get home in the evening and that alone takes almost an hour total. But enough with the excuses, how about an update.

Joshua is doing very well. He weighs around 9 pounds 6 ounces now. He's really gaining weight well. He now has a tube in the nose again, but this time it's a feeding tube. He's getting 2ml of breastmilk an hour into the nasal tube. They said it's not for nutritional value because the milk supposedly just runs right through and doesn't slow down enough to be absorbed, but I believe in miracles and I know he's getting some benefits from it. So that makes me happy!! His bowels are moving both on top and bottom as they are supposed to be right now. Maybe a bit slower than normal, but still moving. He's all around pretty healthy and the doctors are amazed at how well he's doing. He's our little miracle baby.

Enjoying his breastmilk!

They upped his feeds in the lower portion to 11mls an hour. They are trying to up him 1ml a day until he gets to the max feeds which is 28mls an hour. So that'll take another 17 days as long as everything goes well.

I decorated the pin board in his room with fall leaves and pumpkins. Then at home, Abby, Noah and I decorated their bedroom doors and our back sliding door with the same decorations, so that all 3 kids had the same fall decorations.

All of our Fall decorations!

Noah and Abby started lessons again on Monday. It's actually going quite well. They are moving right along in Math and English. Daddy's doing Science and Spelling with them. They're learning about dogs in Science. They also learned more about mammals and the different kinds of teeth. I'm doing Geography with them and we're working on learning the the names of the 50 states in alphabetical order. We learn it in small increments a day. We're up to Nevada. We also use a lightsaber (I don't have a real pointer!!) to point to each state on a big map as we say it, so they're learning the states in ABC order and also where they are on the map at the same time. They are totally loving this and they're doing really well. We even did an art project on Tuesday. So it's going well. We finished reading a really good book that I'd recommend called Ginger Pye. We started it before Joshua was born and just finished it last night. We all loved it. I'd recommend it to anyone with kids from 5-12.

The kids working on their art project.

Well that's what we've been up to this week. We're doing ok overall. We're still getting 2 meals a week from our church and that's been a huge blessing. And we've gotten other meals, gift cards and other things from other friends and family. And we've gotten so many cards and emails. I'm always overwhelmed with how thoughtful people have been during this time. So a big thank you, to all of you. We appreciate you all so much and you're definitely helping us get through this.


Well that's it for now. Good night!!

Day 25

Today is day 25 with just 81 days remaining!! Joshua had a good day today. His surgeon stopped by and switched out the tube in the upper portion going between the stomach and the stoma, to a bigger tube to help that dilate more. Everything seems to be moving along really well there.

We learned some more about the anatomy of the intestinal tract today. We learned that there is a valve that slows down the food from moving straight through and not allowing any of the nutrients to be absorbed. Well Joshua's valve is in the lower portion of the intestine, so that means the top portion has nothing that will slow down food and allow anything to be absorbed. So anything that is fed through the stomach will not be for nutritional value. He's going to be getting all nutrition from the bottom portion, just until the surgery in December to connect everything back together. So that news means the only breastmilk that he'll probably get will be small amounts to the upper portion, and will mainly be just to give him tastes and make him feel like he's getting food, but will not be for nutritional value. Again, bummer. He will probably be only truly "eating" the formula until all of this is over. Whatever is best for him is of course what I want, but what in the world am I going to do with all this pumped breastmilk!! I will have months worth of it stored away!! I don't know, but I'm definitely not giving up. I'll keep up the pumping and hopefully someday he'll either be able to nurse or at least be bottlefed the breastmilk. Either option would be a win for me. I just want him to have that milk.

So anyway, he's still gaining weight and is incredibly healthy and super cute and that's what's important!! I think in the next day or two I'll be reporting that's he's hit the 9 pound mark!

The surgeon today also said that he rarely comments on the cuteness of his patients, but he thinks Joshua is very cute!! I have to agree, but maybe I'm biased!!

Look No Tubes!!!

Today is day 24 of Joshua's life and hospital stay which means we have just 82 days left!

The big news is that Joshua got the tube removed from his nose!! Yay!! He looks so cute without it. He seemed so happy after it was gone. I'm just thrilled for him. But to backup and explain why that happened, I have to tell you that on Friday he had a tube inserted from the stoma up to the stomach which helped open up the intestines enough to allow everything to pass through. This worked very well and he is now having stools from the stoma as he should be. Tomorrow they may change out the tube to a bigger one to dilate even more and then begin feeds. That would be great. So because everything is now going down and out of the stomach, he didn't need to have the stomach contents sucked up and out through the nasal tube anymore and we got rid of it!! I'm calling to have his newborn picture tomorrow now that he doesn't have that in anymore. I just couldn't bring myself to have it taken while it was in.

He is doing just great. He is up to 8 pounds 9 ounces now, so he is officially the heaviest he's ever been!! He is alert and focuses on our faces. He makes the sweetest noises and facial expressions. I spent the night with him on Friday and we had a long night! He wasn't in the mood to really sleep until about 3 and then we had our nurse assessment at 4 and then a feeds change at 6 and then we were up for the day about 8. It wasn't much sleep, but I was glad to be there for him. I think my nights sleep at home is the only thing keeping me sane right now, so I probably wont' be staying there all night very often.

Noah and Abby will be starting lessons back up tomorrow. We're splitting the day up into things to do with Daddy, things to do with Mommy and things they can do alone. For instance, during the day when Daddy is with them he will do Spelling and Science with them. Also during the day when I'm still at the hospital, they can do Handwriting, some Math and Bible Copy Work alone and then when I'm home in the evening we'll do all the others like the rest of Math and Bible, Geography, Music, Art, English, etc.. I'm praying this works because I feel like they need to get back into some structure as they've had the last 3 1/2 weeks doing not much of anything during the day. Now I realize that we worked through the summer in order to have a break when the baby came, but I'd like to save some of that for when he comes home. I'll let you know next weekend how this week went!!

We're again so thankful for the kindness that has been shown to us during this time. The emails and comments, the meals, the driving around of one or many of us, the babysitting, all of it!! It's so nice to have such a support system. We're very humbled by everyones generosity and hope someday to repay all of you for your kindness. Thank you all!!

The photo today was taken with the I-phone, so I apologize for the quality. But it was the cutest picture I got of him all day today!! I took a few with the phone so I could email them to Daddy real quick. He's such a cutie!!

More tomorrow!! Oh and Who-Dey!!!!!!

3 weeks!!

Today is day 21, 3 weeks!! That means we're down to just 85 days or about 12 weeks to go. Joshua is now 3 weeks old!! Wow, I just can't believe my baby has been here for 3 weeks already! I took this picture while I was holding him today. He was stretching and yawning and trying to wake up! I think maybe it was all the flashes from the camera! We're trying to get him to be awake more during the day, so that in the evenings he will sleep. He seems to have that backwards right now. Oh well, we're working on it!

Today he didn't have much done as far as procedures or anything. He was scheduled for a dressing change on his PICC line, they didn't come while I was there, so maybe they came later when Daddy was there. I'll have to ask him. They upped his feedings again to 4ml per hour. He is continuing to gain weight and is now close to 8 pounds 4 ounces. That was Noah's birthweight! The results from his upper GI study done yesterday were that there were no blockages but maybe some constrictions. The fluid that they injected was able to get through but only in little wisps. So they didn't start feeds on the top portion yet. We're still going to wait until they can get the opened up more.

They did something called a sham feeding with him today. Basically they let him drink breastmilk from a bottle, only 5ml, and then they immediately suck it back out with the nasal tube. It's mainly just to let him have a taste of breastmik and to keep up with the sucking motion. It's so funny to me because we have to a person from occupational therapy and a person from speech therapy and our nurse, all present during this! How strange my world has become. I need all these people around to give my baby a tiny 5ml bottle! Luckily all those people are super nice ladies that I really like!! And while I may complain or seem bothered by all this, I'm grateful for every step forward and wouldn't trade it for anything. It's just still a little to hard to realize that this is our reality and so it's not always easy to accept but I do try to stay positive and grateful. I'm working on it.

Tomorrow we're switching the schedule again and I may not get to post until Saturday. I'm shopping the triple coupon deals at Bigg's tomorrow and I'm taking Abby for a haircut. Daddy will get a chance to meet our new resident Dr's for this month and hopefully the surgeons will come by so he can chat with them as well. We don't have anything big planned for Joshua tomorrow, so hopefully it'll just be a quiet day of healing and growing! Well have a great night and enjoy this awesome fall weather!! October is my favorite month!