which room...

We took Connor to the house tonight, and actually it was the first time I've really been able to stop there for quite a few weeks, and now I can walk around, in and out of rooms...imagine where I'll put furniture...k, I'll stop :) But it was fun, and we are so excited to keep it moving! I stopped at Lloyd's Lumber yesterday and came home with TONS of things to start picking out. Overhang color, window color, exterior trim color, exterior colors in general, doorknobs and finishes, interior trim and doors, exterior doors...little overwhelming, but it'll give Connor and I something to do during the day to keep him awake :) (still a little trouble distinguishing night and day, okay, quite a bit of trouble)

Anyways, here are some pictures of the house and then one of Connor on the way home, pondering which room he wants for his own...

we are family

Finally had the opportunity to take a nice family photo. Now, I know it's certainly not the greatest, but, notice the lack of hospital background, tubes, IV's, wires, monitors, nurses....etc. :) And, Connor appears quite squished...we'll blame that on the photograher (thanks, mom :))

Garage

We have a garage now :) Well, the start of one. If the weather cooperates (story of my life) they'll put the roof trusses on the garage tomorrow, and then they will start sheeting the entire roof. Shingles hopefully next week, but I think I'm going to go pick them out tomorrow, let the decisions begin!

Rolling over?

Twice today we discovered Connor in his crib 'half' way rolled over...we thought it was pretty cool :) He really has started to prefer his stomach over his back (okay, maybe he always did and we just disovered it) so maybe that's pushing him to try and roll over...what a strong little man. (so maybe all 2 week old babies do this, don't burst my bubble)






Connor is also having his first babysitting experience tonight. Bryan and I and some friends are going out to eat in the cities, so Grandma and Grandpa Bode are coming in to watch him. Hopefully he's a good little boy! I'm kind of already having anxiety about leaving him, but he'll be just fine and probably not even notice that we're gone.

House Update

I do however, have pictures from the house. The torrential down pours today and probably tomorrow will set us back a few days, but so far things are coming along. Weather pending, they hope to have the roof sheeted next week.

Two Weeks

Today marks Connor's two week birthday, and looking back, it's been a pretty crazy 2 weeks, all the way through today... Today, poor Connor was circumsized. It was incredibly traumatic, not only for him...but for me, too. He did NOT like it, obviously. And then, his diaper rash is still awful, and the doctor basically attacked that today, which apparently we have been too 'careful' with it. AND we all thought his umbilical cord was getting better by the day, but apparently no. It was kind of shoved all the way into his belly button (the clamp came off at Childrens, not sure why), so now we have that to worry more about, too. Ugh. Poor guy. Makes me so sad, and he has been pretty irritable tonight too, which is even harder, but again, understandable. Sorry...no pictures from today.

Some firsts...

and some we like...and some...not so much.

First day of work for dad since we've been home, this is how they spent most of the night.

First stroller ride to get the mail and back...we liked this!

Bath time...not so much. Good thing it was Grandma that gave him his first one, so he'll remember what she did to him ;) Hmm, or maybe it was the awful floor covering he was crying about. It makes me wince some days, too.

Connor learns to share!

We're still trying to figure out our routine here at home. Connor seems to be a little bit of a night owl...so we are going to try and play more during the day so he takes those nice long naps at night instead of the afternoon. Good luck, I know...we can dream. Grandma Loula spoiled us last night and stayed over and took care of the nighttime feedings...maybe she should just move in? :)

I have a few pictures from our first bathtime, but they're not on my computer yet so I will post later, but I will say that I don't think he enjoyed it much...if at all. But, he has a severe case of diaper rash so I'm sure nothing really feels good on it right now. Poor guy.

We're taking our first expedition out of the house today! I have an appointment for my ears, then we're going to attempt the mall to return a few things. Grandma Loula is coming along so we can tag team if Connor decides to hate this experience...

So, the sharing story. Our friends Sarah, Trav and their son Cody were over yesterday and shared that their little dog, Zoe, is in heat and the diapers Sarah bought were a little too big. So of course Connor offered to share a few of his newborn diapers, confident that he'll be growing out of them soon anyways. Thanks, Sarah, for sharing a pic :)

Home SWEET Home!

We're home! We left the hospital around 10 this morning, finally! The car ride home was pretty uneventful, slept peacefully for most of it...screamed at us for the other part of it :) He was getting pretty hungry and downed his bottle as soon as we got home. Grandma and Grandpa Bode were already here to hang out with Connor, and Uncle Aaron greeted us home and helped us unload the car. Grandma and Grandpa Loula are on there way tonight as well. Lots of family love today :)

We are SO thrilled to be home, and as many of you know I named our rental the 'ghetto', it's certainly 'perfect' right now!

I can't say thanks enough to everyone that was supporting us this past week and a half, it certainly was crazy, emotional, hard, but the joy of having him home is helping us to forget it all already :) (okay..maybe still not the labor part....)

One last shot of his home, room 23-4 in the NICU, thanks to those who contributed to the toys in his bed and the toys and balloons on the shelf!

Bryan, watch out for your finger in the camera...okay, so maybe the camera was poorly designed. Just hanging out waiting to be dishcharged this morning.

Bryan was trying to get him to hold the bottle himself already. Patience, Bryan.

His studly duds from Grandma Loula for his homecoming.

Trying out his new toys

Mom and Connor taking a quick cat nap already...

One more night...

Well, Dr. Hoekstra came in while we were feeding and strongly recommended (okay, ordered) that we stay another night. Just to be safe, make sure he doesn't get dehydrated, etc. I think we were prepared for this news so we're not too heartbroken, but just hoping it's tomorrow morning right away. Connor is like the last baby that the doctors round on, they start with their sickest babies first, so I'm thankful he's the last one on the list, but we'll be itching to get him home right away as long as he eats well throughout the night.

So, we're so close...yet so far it seems. One more night in our 8x8 box, we can do it!

House Update

When Bryan was home yesterday he stopped and took a few pictures at the lot, I couldn't help but post them while we wait for Connor's next feeding :) I know, just what you all have been wondering about :) But, the crew is making great progress while we've been up here!! They are working on setting the 2nd floor trusses today, I told Connor we haven't built out his room yet, but should be soon next week!

Update

We still don't know for sure if we'll be coming home tonight or if we're staying one more night. I would be comfortable saying that worse case, we'll come home tomorrow morning. They shut off his IV about 30 minutes ago, and will take it out at his next cares which will be anytime now. His next feeding is scheduled for 5 so I'll go in and do that. We tried an AVENT bottle last time and that seemed to go well, and is what we have at home, so it'd be good to get him used to that bottle and everything.

We're crossing our fingers we still get to come home tonight...but, it wouldn't surprise me if they want him overnight without the IV and everything. So, we'll see. We should know more after his 5 oclock feeding.

Oh, and the doctor says basically no way does he 'need' his tongue clipped, kind of made it sound like a crazy little thing lactation people think helps...and I have heard stories of it really making a world of difference on some babies, but, we'll take him home first then if we feel he still needs it done, we'll do it then.

Today...

Well, we still could possibly come home later this afternoon. The doctor is going to round on him sometime around noon and see how he's doing. He's set to eat again around 11, and we will just be bottle feeding him the rest of the day, not even trying to nurse. I spoke with a MUCH nicer lactation nurse today, and she understood the situation much better and once she learned we were going to bottle feed him the rest of the day she kind of 'switched gears' and started teaching me about pumping and bottling long term. She was really nice about it. Helping me understand how much I should be getting at a time, how much in a day, when to cut a session out so I don't overproduce, etc. Obviously we talked about if Mankato has a lactation nurse there and that we could/should always try them as a resource if we want to attempt nursing again once we get home. At this point...I'm torn. I'm so frustrated with it, but I will I think still try and give it a whirl once we're at home in a more relaxing environment.

Thank you to everyone for your personal experiences, words of encouragement, and sharing your frustrations with mean lactation nurses! :) They are really helping me calm down about the whole situation, and like many of you have said, really, he's getting my milk, and that's the most important thing right now.

Let's hope the little guy is HUNGRY at 11 and gulps down his whole bottle :) Oh, and Shelly, the new nicer lactation nurse, is going to stop by sometime today to check his tongue. He might be a little tongue tied and unable to stick his tongue out far enough, and apparently it's a tiny little clip that might solve all sorts of problems. So, we'll see.

Thanks again for all the support! Let's hope we're on the road today!

Isn't he cute?

Okay, obviously I'm a little biased since I'm his mom, but we put clothes on him tonight for the first time and he just looks so studly :)





Nursing is not going well at all really. We've tried three different times, each time seems to get a little better, better in the sense that he's not screaming anymore, but still not really eating. So, we try nursing for about 10 minutes, then we bottle feed him. The lactaction nurse came around the second time we tried and seemed shocked and disappointed that I let them bottle feed him, which obviously made me feel terrible. The alternative is a feeding tube, and I am just so sick of tubes in him, plus, he can't come home with a feeding tube. So, one nurse said there's really no way he's going home tomorrow, but there seems to be some communication confusion we learned as Dr. Hoekstra had told us as long as he eats and poops like a good little boy for a 24 hour period, he can come home. So, our night nurse is at least prepping him for discharge tonight. We have lowered his bed to flat instead of elevated, put clothes on him and turned off his warming lights, just trying to simulate the environment he'll be in when we get him home, make sure he can regulate his body temp, etc. So this is all good. The plan for the rest of the night will be to head in there every 3 hours, try and nurse, and then if that still doesn't work each time, we'll bottle feed him. I know, I know, you're not supposed to bottle feed if you're planning on breast feeding, but at this moment in time, I want him home. Once we're home in a much more relaxed environment, we can really try hard at it. So, we'll see.

BIG Day!

Today just flew by! After we saw Connor this morning and he got the tube out of his nose, I drove Bryan to Shakopee where his friend Trav picked him up so Bryan could go home tonight and get some work done tomorrow. When I got back to the hospital around 330, the nurse said the the surgeon had cleared him for feeding and we just needed the official orders from his Doctor to start it. She thought if she could catch him yet tonight we could maybe start tonight, otherwise for sure tomorrow morning.

After a fantastic pumping session (ha, please sense the sarcasm here), I went back in to see Connor and then Dr. Hoekstra came in and said we could start feeding him tonight! So, at 5 I got to feed Connor his very first taste of breastmilk, it was so exciting!! And, man, did he gulp it down like he hasn't eaten in a week! Wait...he hasn't :) They just started him on 10 ml of milk every 3 hours. Dr. Hoekstra checked on us a few minutes later and said that we'll do 10 ml at the 8 o'clock feeding and then up it to 15 ml throughout the night if everything went well with his first two feedings.

So, I made a quick stop at Target and came back to feed him at 8. (Oh, and if you were wondering, we're not nursing right now because the doctor doesn't want him to get that much milk right now, so we're breaking him in) The nurse said he had a BIG poop after the last feeding (that'a boy Connor) so that was GREAT news! His second feeding didn't go as fast, but I think he was a little tired. He did get all 10 ml down, but was in a deep sleep by the time we were done. It was so great to feed and hold him for so long!

The plan for tomorrow, I will get to the hospital in time for his 11 o'clock feeding, and this time we will try and nurse. Ang and Jay are coming up after work and will be bringing Bryan, and he and I will sleep in the wonderful little parent sleep room at the hospital so I can go feed Connor every 3 hours...and the BEST part of the day...providing everything goes well with his feedings tonight, he is coming home Friday morning!! Yeah!! Go Connor Go!

Thanks again for ALL of your thoughts and prayers!

One tube down!

The surgeon just came around and took the little tube in his nose out, one tube down, just a few more to go :) We're still waiting for the epidural and catheter to come out, but hopefully soon! Here are a few pictures from just now :)

Good thing for all the toys, they're all helping Connor keep his nuk in his mouth :)

Happy Wednesday

Connor had a good night last night, from what the nurse told us. Bryan spoke with Dr. Hoekstra and he said that they will be removing the epidural and catheter at noon today. Then they will continue to monitor his bowels. The doctor said they MIGHT start trying to feed him later today or this evening, otherwise tomorrow for sure, unless his bowels aren't sounding right. Once they start feeding him, they'll make sure he can handle eating every 3 hours for a 24 hour period, along with the appropriate amount of dirty diapers, and then he could come home! Doctor said maybe even by Friday afternoon, otherwise Saturday!!

When Bryan and I were in there with him just now, he woke up when we started talking to him and was pretty alert while we were updating him on everything that was going on, so nice to see his eyes again, it had been awhile! We are itching to hold him SO bad, hopefully this afternoon once his catheter and epidural are gone we can.

We'll update again after the epidural and catheter are removed.

Report Out

Bryan and I went out for lunch and then found Connor some crib bedding over the lunch hour. Bryan even helped pick it out :) When we got back, we went in and visited Connor, Uncle Kill and Jess were here as well, and we learned that they had to give Connor another dose of morphine and upped his epidural. When his surgeon, Dr. Rustad, came and made his rounds, it sounded like Connor was still in a lot of pain from the surgery. Poor guy, it's so hard to see him in pain :( However, on a brighter note, they have shut the bilirubin lights off and taken his shades off, finally! The nurse also has not had to drain his little tube from his stomach, which means that he's getting rid of everything in his little tummy on his own. Good news! They hope to be able to take the tube out tomorrow. That's about it for now, still just trying to let him rest and recover.

Taking it Easy

We saw Connor right away this morning and visited with his Doctor. Connor will still have the epidural today and tomorrow more than likely. He also had a little dose of morphine last night, but the doctor doesn't expect him to need any more of that. He did also pass a little stool last night, so that was great news! Today's prescription for Connor is basically rest and relaxation. He had a big day yesterday and one good day of recovering will make a world of difference. Hopefully tomorrow they will remove the tube in his nose to his stomach and see if he can pass the gases in his tummy out the 'right' way on his own. The goal would be to try and start feeding him Thursday or Friday, we're hoping for Thursday as that would hopefully keep us on track for coming home on Saturday, providing everything works out. We obviously want to leave the hospital 100% confident and comfortable with his eating and pooping :) So, today will be a pretty uneventful day (I think we all deserve one of those).

All sprawled out...and drugged up.

His station in NICU

Post-Op

We were so surprised when we went to go see Connor after his surgery that he was wide awake! Well...wide awake and drugged.. :) He will keep his epidural in for a few days yet to relieve him of the pain, and yes, it's working much better than mine, thank God. Grandma and Grandpa Bode also came up to greet Connor out of surgery so that was great for Connor. We'll update today once we get to the hospital with how his night went and everything. Notice his little bandage over the incision is in the shape of a heart :) Okay, and, he looks a little pale...but, remember what he just went through :)

Recovery...

The surgeon just came and met with us in the waiting room. Said everything went really well, they removed about 7" of his colon and had enough leftover to just tie the two ends together :) (such a medical explanation, I know) He'll be recovering upstairs in the NICU (neonatal intensive care unit, where he's been since he got here). We should be able to go see him in about an hour, give them about 20-25 minutes to get him up there, then 20-25 minutes to get him settled back into his crib in his unit. He had an epidural for the pain (hopefully it went in easier than mine and lasted!) and will still have that in until tomorrow. They want to wait to see if he can pass more of his meconium on his own on Wednesday or so before they start trying to feed him orally. The doctor was hopeful that if all goes well we should be able to pack up on out of here on Saturday. Yeah!! Way to GO Connor!

Connor PULLS THROUGH!

The nurse just called a few minutes ago and said that Connor was doing well, the surgeon said they were in the 'home stretch' and was just finishing the pull through operation. I immediately was like, they did the pull through?? (starting to cry of course) and he seemed kind of surprised, well, yes, was there a question? Then I just said yes, we weren't sure which one, so glad to hear we got the pull through, etc. So, no idea how long it will take before Connor is out of surgery...but there are tons of tears of joy here!!!

Thanks, thanks, thanks to each and every one of you for praying and thinking about Connor! We still have to get him out of surgery and recover yet...but...we are BIG STEPS closer to getting him home!!

4:38

Just got an update, Connor is still doing very well. They have done the biopsies, have the results back and don't expect to have to do any more biopsies...which means they should have found the point in the bowel that starts the good cells again. We don't know yet if this is good news for a pull through or not, but we're still optimistic!

3:48

Dr. Rustad has started the procedure and Connor is doing very well. They are going to try and give us hourly updates....

while we wait...

Here are a few pics of recent, first are from our last really good cuddle time before surgery, and then our way down to surgery. It's 3:39, the monitor still says that he's entering the OR...which, is frustrating if it is really taking that long to get into surgery, but, we'll be patient.

Surgery !

They just wheeled little Connor into surgery at 2:27 PM after a long time cuddling with Mom, Dad and Grandma. We spoke with the anesthesiologist Dr. Paul and his nurse Margaret who explained everything they'll be doing to keep him sleeping. Could be a long "case" due to the need to wait for the biopsy results during the procedure. We're hanging out in the surgery waiting room now where there's a VERY cool monitor on the wall showing us everthing they're doing with little symbols. (Connor's number is 3506) :)
We'll know when the procedure starts, and when it ends and when they're wheeling him out. Nothing to do now but wait it out...and hope for the pull-through option to happen : ) Could be 3-4 hours if it's a pull-through. But we're supposed to hear something from the surgical nurse once/hour via phone in the waiting room.

We met the Surgeon

Bryan, mom and I just got back from taking turns holding little Connor. He was squeaking for me, it was so cute. The surgeon, Dr. Rustad, came and explained the surgery to us, he basically just re-told us what Dr. Hoakstra had told us. How the intestines are positioned within his little body, where the bad part is, how the 2 surgery options would work, etc. Everyone seems optimistic that Connor is a great candidate for the pull through surgery, however, obviously we just want whatever is best for Connor, and if that's the colonostomy, then that's what we get. She kind of gave us the run down on what the bag would look like, how we'd take care of it, even said it might be easier to take care of than a dirty diaper :)

So, we are going to head out and get some lunch, then come back and wait for the call that he's going down to surgery. We'll go down with him and apparently there are some really great monitors that tell us exactly what is going on during surgery, when they intubate him, when they make the first incision, then probably the closing alerts. Sounds like...if we start seeing the closing alerts within an hour, hour and a half after the first incision, we're getting the colonostomy, if it's taking 2-3+ hours, that should tell us that we're getting the pull through, so, I'd never say I wanted his surgery to last LONGER than it has to...but I might be today :)

Will keep you all posted!!

Surgery is Scheduled

Dr. Hoekstra said Connor's surgery is scheduled for 1:30 this afternoon. We will be able to go down and meet and talk with the surgeons before hand, and our nurse has been great about making sure we know we can be in there by him as much as we want today, we'll for sure be holding and rocking him a bunch before surgery!

4 days

It just seems like SO long ago that we had Connor, but as I was thinking of it this morning, he just turned 4 days old this morning. 4 days, so much has happened since then! Bryan and I just got to the hospital a few minutes ago, checked on him, he's doing well and sleeping. We also talked with Dr. Hoekstra, he doesn't know the time of the surgery yet, but he suspects we should know soon hopefully. I found out yesterday that my dad's cousin, Jim Varley, and Dr. Hoekstra were both stationed in Ethiopia together for a few years and their families were very good friends. I asked Dr. Hoekstra about it this morning, and he knew just who we were talking about, wanted to know how they were doing and where they were at. Small world.

Here's a picture of what we come home to once we get to Mary's...amazing. And Alice and Bob, if you're reading this, thank you SO much for the gorgeous flowers!

We'll post as soon as we know what time the surgery is.

Good luck tomorrow Connor!

The surgery will for sure be tomorrow, we just have no idea what time. Bryan and I are planning on being there about 7:30, the surgery would for sure not be before 8, so hopefully it gets scheduled for the morning, but we will not know until tomorrow. They are scheduling 3 hours for the surgery, should be about 2-3, but just wanted to schedule enough time.

We also spoke with the anesthesiologist. She explained how they will put Connor to sleep, how they'll monitor him, etc. They all seem very confident that it's a pretty routine surgery, even our new night nurse that came on tonight said she has seen lots of babies with this syndrome, so they're used to seeing it here at Childrens.

Mom and Dad got to hold him tonight for about 20 minutes each. Connor woke up when daddy was holding him, lucky dad!

Praying for Connor to 'pull through' with the 'pull through' surgery. Ha, I'm so clever.

Mommy can't wait to take a family photo where we get to actually 'get ready' and attempt to make ourselves (k, just me, Bryan and Connor are cute) look decent :)

Recent Photos

Here are a few photos from late last night and then some from today :)

From last night, his neighbor Leo has a TON of toys in his crib, so we thought we'd bring a few of his new toys. Bryan has been calling Connor his 'little Tiger', so it was fitting that he got a little stuffed Tiger, and then an adorable little puppy.

This morning, he was Awake!!

The bobspy twins? They coordinated so well today :)

Mom trying to comfort him after he started to cry a little, we're hoping he learns how to be a good 'sucker' by the time he's out of here!