Twitter

I started a Twitter account (actually about a month ago) so you can go there for updates of the next few days. The address is www.Twitter.com/mama2my3

I should be able to update that as much as possible. Love you all!!

Day 79 - Last Pre-Surgical Post

Today is day 79 of Joshua's life and hospital stay, which leaves just 27 days until Christmas and his homecoming. We have just one more day until surgery!!

Joshua is still doing well. He got a blood transfusion today. They wanted him to be nice and full for the loss he's sure to have during surgery. It'll help him get through the surgery easier and heal faster. He got a total of 120ml of blood today. So with all the extra blood he gained a few ounces of weight! He weighed about 12 pounds 6 ounces tonight. He got his PICC line put in yesterday. They gave him some medicine to make him sleepy and it worked! He slept through most of that procedure. I was so glad to hear that. I let Daddy be there for that procedure, I just didn't want to witness another procedure that upset him. So I think he's all ready to go now. He'll go NPO tomorrow night (nothing by mouth) which may make him a bit cranky, but hopefully he'll just sleep through it.

This will probably be my last post until after the surgery. Tomorrow is pretty busy for me. I'll be at the hospital in the morning and then I have to finish packing the kids for their stays with family next week, and then take Abby to cheerleading. But I just wanted to give a quick update before the big day. I'll take my computer to the hospital Monday so I can update it as much as I can. I can't believe it's finally here!! My baby's belly will be back to normal. Oh I can't wait to see it.

Here's a couple of pictures from Thanksgiving. Abby and Noah had dinner twice. Once with me at my Mom and Dad's and then later with Daddy at his Mom's house. It was weired being split up like that, but it was nice to see all of my family. Seeing them sort of gives me a little emotional boost and I needed it. Joshua was wearing his little "My First Thanksgiving" outfit. It was very cute on him of course!! He had 3 turkeys on it, just like I have 3 turkeys!!

Well please pray for our little baby and his team of doctors and nurses. And for us. And for Noah and Abby. This is what we've been waiting for, for soooooooo long. And I'm just praying that everything goes well and as planned. Thank you all so much.

Oh and I just wanted to add, if anyone wonders why there's never any pictures of Steve on here, it's because he asked me to not put pictures of him on here way back when I first started the blog and so I try to respect that. He's very private and hates being shown like that, I guess. So that's why he's never pictured on here. Thanks again to all of you, we love you all!!

Day 77 - Thankful

Today is day 77 of Joshua's life and hospital stay. He's 11 weeks old now!! We have just 29 days until Christmas and Joshua's homecoming. We have only 3 more days until surgery (when I count down, I don't count the day I'm in now and the day of the event, in case you were wondering!!).

Today I'm thankful and probably most people are, so I thought I'd just share a few of the things I'm thankful for today.

I'm thankful that....

I've been blessed with an awesome husband and three terrific kids!

Joshua now weighs over 12 pounds!

Noah and Abby got to visit Joshua for a few hours yesterday!

The child life people at the hospital do such nice things for us like making a welcome sign for Noah and Abby!

Joshua's final cystic fibrosis test came back negative!

Tomorrow we begin getting ready for surgery by putting in a new PICC line (a central IV)!

Noah and Abby have remained healthy and happy during this difficult time in their lives!

I have a wonderful husband who has truly been my partner in this!

I have somewhere to go for Thanksgiving where I'll be spending time with lots of my family!

My baby is healthy in spite of his condition!

Our van is still going strong!

We have a wonderful home and soft bed to come back to every night!

So many people have offered us such encouraging words during our struggle!

I can see the light at the end of the tunnel now! It's almost over!

I'm still able to pump breastmilk with hopes of being able to nurse my baby when he comes home!

Noah and Abby were just enamored with their little brother!

Joshua smiled at his brother and sister!

The dishes are done and laundry is relatively caught up!

Gymboree is having a big sale!

I have sooo much more to be thankful for, but I'll leave it at that for now. I hope you all have a wonderful Thanksgiving and I'll update more again soon!

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!!