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!

Day 20 - The Last Day of September

Today is day 20 of Joshua's life and that leaves just 86 days until Christmas and his hopeful homecoming!! Hey, isn't that nice of me to at least update you all on how many days you have to left to shop before Christmas!!

Joshua had the study done on the upper portion of his intestines and stomach today. We won't really know the results of that until tomorrow morning. It did show that he suffers from some serious reflux. Normally we wouldn't have known that until after he started feeds and was suffering from it, but now that we know ahead of time, we can hopefully alleviate the problem before it starts with some medicine or something. I was the one with him during the test today. It always intimidates me when I go in there for the tests. I've never had to do those kinds of tests for myself, so it's a bit scary for me. But it all went well and he was only mildly upset with us!!

Other than that it was a pretty quiet day. He enjoyed his feeds to the lower portion of his intestines. They actually upped the amount of the feeds to 3ml per hour and they lowered the liquid feeds they're still doing in the iv. He gained weight again and is over 8 pounds now!! Yay, he's just a few ounces away from his birth weight now!! The surgeons on this floor are used to seeing lots of tiny preemies so they always comment on how big he is. I think he's tiny!! I mean my other "babies" are 7 and 9, so compared to them, he's tiny!!! I guess it's all relative.

He's becoming more and more awake and alert everyday. He had several awake periods today and during those he was very alert and looking around and studying mine and Daddy's faces! I can't believe how fast he's changing already. He's such a sweet boy.

Well that's it for today. We may be starting feeds to the upper portion tomorrow (hopefully breastmilk), I'll let you know if that happens. Love you all!

Day 19- Finally Feeding!!

Today is day 19 (yesterday was day 18) of Joshua's life and hospital stay. That leaves us with 87 days until Christmas and a hopeful homecoming. I missed yesterday's update post because I had the night shift at the hospital and didn't get home until almost 11pm and was just too tired to do it.

They have started feeding Joshua in his lower portion of intestines, because the study done on the lower portion showed no blockages. The majority of his intestines are in the lower portion, below where they cut to make the stomas. Because of this, they are comfortable feeding him through there because it can really be digested since it's so long. They started out feeding him breastmilk last night and he fed on that for about 15 hours, then they decided to switch him to a special formula because they felt like since they were bypassing the stomach, the breastmilk may not be being properly digested. I went from so happy to so bummed. At least he got the 15 hours worth! I am however, still very happy that he is feeding at all. I'll take any step forward that I can get! He is being fed continuously through the stoma at the rate of about 2ml per hour right now. He has gained weight again and is close to 8 pounds now. He will be having a study done on the upper portion of intestines either tomorrow or Thursday. Hopefully they'll be able to figure out what is causing the back up there so they can begin oral tube feedings and get rid of that horrible nasal tube and get him back on breastmilk. He has had 3 dirty diapers since starting the feedings yesterday, which is great news!! That means things are working down there as they should!!


Such a sweet little angel!!

The pump set up with breastmilk last night!! I was so excited, I took pictures of everything!! The tag on the tube says human milk!! Soon we'll be back to breastmilk, I know it!!

I guess his jersey was good luck for the Bengals!! Yay!!! I just know they were thinking of this sweet little baby sitting in his hospital crib rooting for them when they won!! At least they should be!!

I had my 2 week check-up today. I'm healing just fine. My blood pressure is now down to normal and I can stop taking the medication for it. I've also lost 35 pounds since giving birth! That's a lot for 19 days!! I only gained 15 during the pregnancy, so I'm down 20 from my pre-pregnancy weight. It's the NICU diet. I only have time to eat quick meals and no time for snacking, plus all the stress is I'm sure helping out as well.

Well I'm off for now. It's dinner time and the kiddies are hungry. I'll update tomorrow if all goes as planned! Oh and I wanted to thank everyone for the kind emails and comments on here. I appreciate it so much. It really helps me get through the days when I get so much love and encouragement. So thank you all so much, you're all appreciated!!

Day 17 - Bengal Pride

Today is day 17 of Joshua's life and hospital stay which leaves us just 89 days until his hopeful homecoming. Yay, we've made it under 90 days now!!

Not too much happened today in Joshua's care, he had a pretty quiet day. Tomorrow things will be different as they do the study of his intestines and possibly insert a feeding tube. And also he may be getting that nasal tube out. So we'll have a lot to share tomorrow. He is still right around 7lbs 11ozs in weight. He is having lots of bowel sounds which is a great sign. It means things are moving in there. It appears that things are moving in the right direction for him and we're so thrilled.

This morning, after we dropped off Daddy at the hospital, the kids and I ran to Wal-Mart. I needed to get Abby some shoes for the fall/winter and while we were there we saw the Bengals jerseys. Noah was already wearing his and so we decided to get Joshua a matching one to Noah's. As I'm typing this, it's the 4th quarter with 4 minutes left, so hopefully it'll bring them some luck!! I just thought he looked so darn cute in the jersey!! I can't wait to bring him home so I can get pictures of Noah and Joshua together in their matching jerseys!!

I stayed with the kids in the morning because they were going to go to a family birthday party with my parents which included a dinner and bowling. They had a great time with that. I've already picked them up and in a few minutes we'll be leaving to go get Daddy. I just have to brag on him for a minute. Boy did I hit the jackpot with him. He has been such a great support and just an awesome Daddy during all of our marriage and especially at this time. I could not do all this without him. I really feel like that's been a blessing to come out of this situation and that's a building of our relationship. I wish that could've happened under easier circumstances, but it is what it is.

Well I need to go pump again before we leave. So have a great night and Who-Dey!! (I hope!!)

15%

Today is day 16 of Joshua's life and hospital stay and that leaves just 90 days to his hopeful homecoming. I did the math today and found out that we're 15% of the way. That's not a whole lot, but it's something. I'm glad to at least have that much done!

Joshua is becoming more and more awake and alert now. He can focus his eyes on your face and stare at you. It's so sweet. He makes lots of sweet little coos and grunts!! I love it so much. I can't wait to bring this little miracle home.

He had a great day. There was a bit of drama with his night nurse, but all has been worked out and is fine now. He slept most of the time today, but did have a few awake periods. He had the hiccups a few times today. He has them at least 2 times a day when I'm with him. He does not enjoy them!! The x-ray of his abdomen from yesterday showed no blockages, so today they stopped the suction on his nasal tube and they are now letting his stomach contents go down into the intestines. They even mentioned maybe letting him have feeds through the mouth tomorrow. Oh what a blessing that would be. I just know he would feel so much better with some food in his belly. I mean he's 16 days old and has never had an ounce of food in his belly. He would love it. I hate it so much when I hold him and he roots around for food. It just breaks my heart knowing I have what he wants, but I just can't give it to him. So hopefully he'll at least be able to get the breastmilk soon, even if it's not straight from the breast. I'll be so relieved when he gets it. He has gained weight the last two days and is now about 7lbs 11ozs now. So he's working his way back up to his birth weight.

My pumping is still going well. I'm getting about 450-550 milliliters per day, which is around 16ozs. I saw a chart today that says most breastfed babies between 1 and 6 months need 19-30ozs per day, so I have some work to do in getting that up, but at least I've made it up to 16. They told me today that my spot in the freezer is quite full and I'm glad to have that stockpile that will help make sure I don't ever run out of milk for him, which I'm of course not thinking will happen. So I'm storing the milk I pump at home, here in our home freezer for now, until he starts eating and using up what's there. Yesterday I was pumping at the hospital and his surgeons (both men) came in to do his dilation, so there I was sitting on the couch pumping while they were talking to me and doing the procedure. It was a little embarrassing, but I'm not about to stop the flow while it's going!!

In other news, Abby and Noah had some fun with Daddy this morning. They went to a Lego Club meeting at the mall and then to a Lowe's build and grow. Then they went to Toys R Us so Abby could spend her birthday gift card that my grandpa got her. She got a Zhu Zhu Pet, which I had never heard of before but she LOVES!! And then they went to Kroger to get more Hostess cakes that were on sale for 1.88. All three of them can't resist the cupcakes!! I bought a couple boxes last night and when Daddy heard how cheap they were, he had to get more!! So they had a great day and now we're all off to bed!!

Half a month down

Today is day 15, which means we have about 91 days to go. 15 days, wow, that's half a month!! I'm torn as to how to feel about that. Happy that we've gotten 15 days done already, and sad that he's already 15 days old and all of his days have spent in the hospital. Oh, I don't know.

So the picture above shows the sign they made for his door. They hung it up today. I think it's cute. Only the babies in private rooms get a cool sign like that, we feel very blessed to have it.

Joshua had a not so good night last night with Daddy. He cried nearly the entire time Daddy was with him and poor Daddy felt horrible about it. He's there with him again tonight and I hope and pray they are having a better night. His day today was pretty good. He was awake for a whole 2 hour spread, sometimes just quiet and looking around and sometimes crying. It wasn't so bad.

I love that boy so much, I just can't even imagine our life without him. The kids love him too. Tonight I was supposed to take the kids to soccer but it was cancelled, so we just went out to Target and Kroger and filled up the bare fridge. At Target, I noticed Noah was in a bad mood and I asked him what was wrong and he said he wanted Joshua to come home. So I guess it is affecting them. It stinks that they can't even go and visit him anymore. I'm trying to show them pictures everyday and update them about him. This is just so not fun.

His health update is that he did pretty well today. He had more green output from his nasal tube and his stoma was dilated for the 3rd time. Still nothing coming out of it. His surgeon came by today and he said we're going to be getting more "aggressive" Monday with his treatment. They are going to do a study of the lower portion of the intestine to be sure there's no blockages there and then they may start feeding him just in the lower portion while the top portion still works itself out. I'll be so happy when they feed him. I just know the breastmilk is going to help him heal. I just know it. So today he had another x-ray for them to check some things out and of course he did not enjoy that as they have to hold him down to do it and he does not like being held down!! His nasal tube got clogged and his belly contents got too full and he vomited some of them up. It scared me to death when it happened because his belly contents are just bile which is bright green. He was fine though, we just had to clean him up and change his clothes. Overall he's doing well, and he looks and is very healthy, he just needs to get off the IV feeds and onto real food! Then we'll be heading in the right direction and all will be happier.

Well that's all for now. Nighty night!

Day 14, the Birthday edition

Our sleepy boy with his Mickey blanket this morning!!

Our private room!! Isn't it beautiful!! Beside his bed is the rocking chair and in the window area is the sleeper sofa. The bathroom is off the left, out of the picture. It's sooo roomy compared to the cramped corner we had in the other room. I love it!!

Today is day 14 (2 weeks!!) of Joshua's life, which means we have about 92 days to go until he comes home.

Today is also Abby's 7th Birthday!! Happy Birthday my baby girl!!!!

Today went pretty well. His output from the nasal tube lessened greatly and was very clear, Praise the Lord!! Tomorrow they may not suction it anymore and just let it go on it's merry way down the intestines!! He had another dilation of the stoma to try and help things along. Hopefully that'll help also. He also had his PICC line replaced. That wasn't much fun for either of us as I was assigned with the job of holding his head still and while he was screaming, that wasn't easy. I felt like such a bad guy trying to keep it still, but I managed. It didn't take too long thankfully and all is well now. He was mostly quiet and sleepy today except for that. I hope he's been that way for Daddy tonight as well (I haven't heard yet). He hasn't gained weight in 2 days because they had to change his IV feeds due to the PICC being misplaced. Again, hopefully tomorrow, that'll get worked out as well.

I also just want to mention how wonderful the Dr's are there. I love them all so far. He has this wonderful resident neonatalogist who always takes time to stop by and see me personally, nearly every day. She is so kind and caring. I just love her and tomorrow is her birthday. I hope I see her so I can tell her happy birthday!!

For Abby's Birthday today I woke up early to make her chocolate chip pancakes with whipped cream and sprinkles. I know she loved it because everytime a family member called today to wish her a happy birthday, that was the first thing she told them. I also got her, her favorite meal for dinner: Frisch's kids meal with macaroni and cheese. And since we had her party at the mall and couldn't really do any candle lighting, I got her a hot fudge cake and put candles in it. Noah and I sang to her (Daddy had already left for the hospital) and she blew out the candles. We also read a Curious George Birthday book and while I was gone today, she and Noah enjoyed Beverly Hills Chihuahua in the theater. She said it was a good day and I'm glad. I am relieved to have that over, I don't have another kid birthday until January and hopefully things will be back to normal by then.

The flaming hot fudge cake!! And yes she is still in her pajamas at dinner time. It's her birthday after all, she doesn't have to get dressed!!

Sitting in her special birthday chair!! I decorated it for her as a surprise!!

Abby's birthday book. She loves Curious George.

So that's the update for today. More tomorrow...

T-minus 93

Today is day 13 of Joshua's life and his stay in the hospital which means we have 93 days to go until Christmas, our goal! Daddy sat him up for this picture. I thought it was cute!! Tiffany, if you read this, that's the outfit you got him for his shower that he's wearing under the blanket!!

Today was a bit rough for all of us. Joshua had a few minor procedures, but he doesn't really enjoy any kind of procedure. They began the dilation of his illiostomy, hoping to get it moving. That one didn't bother him too much. Then he had a dressing change for his PICC line (a central iv that goes straight to the heart) and he was not at all happy about that one. Then during the dressing change and his major fit, the line pulled out a tad and they had to order an x-ray to check it's position. Luckily on this floor, that means they bring an x-ray machine to him. So during that, he threw another fit and we found out that indeed the line is not where they want it. So tomorrow, we have to go down to radiology to have a new line put in the same position as the old one. He will not enjoy that either I"m sure! Then because he was so upset with all that, even just the nurses assessments which happen about every 4 hours, really made him angry too. So he wasn't too relaxed today. I think he really just hates the being held down part of most of the procedures, he doesn't enjoy that at all.

I had a migraine most of the day. I think it's stress related. I'm still registering pretty high blood pressure and when I add stress to that, I tend to get a headache these days. I've also been dealing with a lot of the Mom guilt today and this evening I've really been missing my baby. I've sort of gotten used to his little sounds and grunts that he makes and I thought for a split second that I heard him here at home and then of course I remembered that he's not here. That kind of hurt. So I've been kind of down tonight. Hopefully tomorrow will be better for us all.

Oh and just a quick update, he lost a tad bit of weight, but he was also weighed on a different scale this time. His output from his nasal tube turned back to a dark green this morning (not good), but cleared up some by this afternoon (good). Still nothing coming out of him, but maybe soon.

Tomorrow is my darling baby girl's 7th birthday! I'm going to decorate for her tonight as a surprise for her in the morning and I'm going to make her a special breakfast before I leave for the hospital. Then Daddy rented her Beverly Hills Chihuahua and she's going to watch that in the theater downstairs. We already had her party this past Saturday. I'll probably make her favorite food for dinner too, it's just macaroni and cheese! I hope it's enough to make her feel special. Oh no, there goes the Mommy guilt again. I hope she knows I'm doing my best.

Well that's it for now. Goodnight.

94

I love this picture because you get a rare glimpse of his open eyes and he's cuddling his cute little wubba nub binky!!

Today is day 12 and we have 94 to go to Christmas and hopefully Johsua's homecoming. We had a good day today. He gained a little weight again. He's stomach contents are continuing to lessen and become clearer. All good things. Tomorrow is the dilation procedure. They will do it at his bedside, probably in the morning during the surgical rounds. They ordered morphine, so I guess this might not be a comfortable thing for him. Hopefully it won't be too bad. I spoke with the neonatologist today, she's very nice and always stops by to talk to me, and she said when they do this tomorrow he may be able to immediately expel some stool. We're hoping. That's a huge step to being able to be fed some breastmilk. Oh I'm praying it'll happen, if not right away, then very soon.

In other news, we were upgraded to a private room today. I can't even believe I'm typing that!! There's only 11 or so private rooms and between 40 and 50 babies in the regular rooms. I know it's a huge blessing to have been given this. It is going to make our stay a whole lot easier. We have a private bathroom with shower, a pull out sleeper sofa, a rocking chair we don't have to fight to keep in our space, and I can pump in the room and not have to leave Joshua!! Plus, there's a window!!! I am elated about that. I so wanted my son to see and feel sunshine and be able to get glimpses of the beautiful fall. I was so thrilled to see that we had a window!! There's also a desk area with internet access, for us to use, which means Steve can work in the room and not have to leave the area. Plus we have privacy!! No longer, do I have to stare at all the nurses and babies in the shared room. Oh, it's so nice!! I could go on and on. It totally is a huge blessing. I can't believe it!! I'll have pictures of it tomorrow!

Speaking of tomorrow, we're changing up the schedule so both Steve and I can be at the hospital with Joshua during the procedure and the kids are staying home and Grammy's coming to stay with them. I'll be so glad to see my husband, we've just been passing ships the past couple days!!

Last Thursday we snuck out of the hospital to take Noah and Abby to Disney on Ice. My mom stayed with the baby that night for us, which of course she can't do anymore since they've imposed the new visitor restrictions. So here's just a couple pics from that. With all the smoke and fog they put out with the show, my pictures look terrible. But in case you wanted to see, here they are!! It came at the perfect time, because we had just learned that Joshua would be staying until Christmas and we would have to cancel our planned December Disney trip. So we got just a little taste that night. They did a section of the show devoted to the It's A Small World ride and I got teary eyed!! I love that place!! So that's it for tonight. More tomorrow.

95 Days To Go

Today we have 95 days until Christmas which is our goal to have him home, so that's the countdown I'm doing. It's day 11 of Joshua's life and his stay in the hospital. Today he gained weight. He started out life weighing 8 pounds 8 ounces and after the removal of the cyst and not eating for a while, he had lost over a pound. Now he's back to 7 pounds 9 ounces. His stomach contents are coming out clearer and clearer, this is a great sign. As the intestines heal and allow the contents to come through, what we suck out the nose will be come clearer, so that means he is finally getting things moving in there. He slept most of the day and wasn't too cranky. I held him a lot and got to hold him chest to chest with his head up by mine and we snuggled for awhile. I loved it!!

Daddy is with him this evening while I'm home with Noah and Abby. We had dinner and are spending time together. We're all about to head upstairs for showers and laundry folding. The schedule overall went well today. I may go in earlier and leave a tad earlier to avoid some traffic tie ups. Today he was wearing that cute sleeper in the picture that my mom got him for his baby shower. He almost looks "normal" in that picture. The sleeper hides his many cords and cables and you can just barely see his nose tube. He looks very handsome!!

He has a procedure scheduled for Wednesday to dilate his illiostomy (the stoma that is the end of the upper portion of his intestine) to try and get things moving more. Other than that, we're just waiting for him to get things rolling in there and we can start feeding him breastmilk. I'm stocking up in the meantime!!

Well that's all for today. Goodnight!!!