Swallow Study Take 2

 Today was a very long, busy, long day. We went up to Primary's for Linc's cardio follow-up and his second swallow study. 

They set up the appointments and decided they needed to be at 10am and then 1:30pm. Thus we had a long day at the hospital, it was our longest outing with Lincoln. (He went to church last week for the first two hours.) Lincoln did surprisingly well at the hospital. 

All hooked up to check his heart. His heart is looking perfect! The cardiologist said I could fly out at the end of the month, no worries. 

During the 2 hour break between appointments I got to visit my favorite pumping room and then we chilled as a family in the cafeteria. It was like visiting an old friend. We knew our way around from spending so much time there before we felt like experts. I think the thing that made it fun today was the fact that we knew we would be leaving all together at the end of it. 

After our long lunch we had our second swallow study. I was way more nervous this time then last, I think I realized this time how hard swallowing can be. Anyways I still think Lincoln looks so grown up in the x-ray chair (even if he is in the 9th percentile for his weight...not good). Lincoln was pretty grumpy and hungry because we had stopped his continuous feeding two hours prior so he would be ready to drink the weird x-ray juice.

Well bad news, Lincoln still can't swallow liquid. It goes right into his lungs. His brain and his swallow muscles still aren't working together. He has improved since last time, but not to the point were we are anywhere close to losing the NG tube. Looks like we'll have it for another month. We have a third swallow study set up for the end of August. Also we have to decide if I should stay behind so Linc can get continuous treatment from Primary's Speech Therapists or try finding someone in South Bend. Our insurance goes till Sept. 21st so it wouldn't hurt us to stay here a little bit longer. 

We got home around 2:30pm (we left the house at 9am) and Ryan had just enough time to help me get Lincoln settled before heading off to work. Lincoln was overly tired, cranky and had tons of issues with the liquid and nectar they had given him for the swallow study. The only time he stopped crying was when I had him on my chest. That made getting anything done today hard, especially pumping.

I needed a little miracle and was given it. The only time Lincoln was not screaming to high heaven was the 15 minutes I pumped. He laid in his bed and just looked around kicking his legs and loving life. Another blessing was my neighbor brought me dinner. I understand why bringing dinners is just a blessing now. Eating tonight was hard due to Lincoln needing to be held, cooking would have been out of the question.

Another blessing was the Moby wrap. I bought this before Linc was born with the hopes that he would love it enough to chill in it during the flight to make our lives easier. Turns out Lincoln loves it and was finally able to fall asleep for a little bit and bonus, I could get a couple things done.  

All in all today was a hard but reassuring day. His heart is healing perfectly, his swallowing has improved and we got some major cuddle time in. I am hoping that tomorrow little man is feeling better.

Can you tell it was a tough day on us? 

What ifs...

We've been home from the hospital for a week and a half now. Since being home I've had more time to process what happened to us. Lots of time I was shocked when people told me that they read the blog and cried. I didn't cry when I wrote it (well just that one weepy day when I was crying over everything from frysauce to surgery). Or they'd tell us how strong we're being. These comments aways baffled me. I didn't write these blogs with the thought "I MUST be strong and make people cry." No I just wrote what was happening so everyone would be aware and we wouldn't have to keep telling the story over and over...although honestly I love telling his story. Now that I'm home and able to sit and ponder on what we've been through I'm beginning to understand. It hits me at odd times how close we were to losing Lincoln and all the other what ifs that could have happened.
What if...I had gone into labor at my house.
What if..my water broke somewhere other then the hospital.
What if..the doctors hadn't known about Lincoln's heart defect.
What if..the bypass didn't work.
What if..his surgery didn't go as planned.
What if...
What if..
What if..

But then I catch myself looking at Lincoln and marveling at all he's been through. Looking at him today you'd never know he has a scar down most of his chest or that he went though open heart surgery and was put on bypass at the tender age of 8 days old. You'd never guess his little body has already had 13 minutes of CPR while most people live their lives never going through that. You'd never guess anything was wrong with him...other then having a feeding tube he looks perfect. He truly is a miracle.

I was looking at my friends blogs and wondering what I should do for his monthly updates. I caught myself thinking I should be paying more attention to his preferences so I could do a monthly update of all the milestones he has met. I'm ashamed to say it but I was starting to worry since his 1 month mark is coming up quick I didn't have anything noteworthy to say about him. Then I remembered all he'd been through his first few weeks of life and realized that he's a miracle and I have a ton to say about it.

His one month post will be coming shortly. Today is just a ramble post. Now for what everyone has been waiting for...pictures.

We couldn't take him to get professional newborns taken so we did our own. 

Hope you enjoy our first try (of many) at imitation photography. 

In this picture you can see his scar and the two little scars from the chest drains. Also his umbilical cord had just fallen off so don't mind that gross bandaid on there. 

We took these photos on Saturday when his NG tube had fallen off placement. We had to replace it so we thought we'd sneak some pictures in before the tube came back. 

The next big thing for us now is a swallow study tomorrow as well as his cardio follow up. Looks like we'll be spending the day at Primary's again. I have to admit I am super nervous for this swallow study. I took swallowing for granted the first time around. We've been working with Linc twice a day since his last study, hopefully he's ready. I know I am more then ready to start working to lose the NG tube.

Home Life

Now that we are home I expect blogging to take more of a backseat. Our first night home was wonderful! This feeding tube thing isn't so bad. We put 6 hours worth of food in it and thus we got 6 hours of sleep...well I had to still get up to pump but still. Lincoln woke up around 5am for his grump time. He is usually fussy around 5-6am but after that he goes back to sleep.

Being home is so wonderful and tons less stress. I love getting up in the morning when I want to not because doctors are coming in and I don't want them to catch me in my pajamas. I also love how lazy it all is. Lincoln basically sleeps all day either in his Pack-n-Play or in the sweet bouncer my aunt Sheree is letting us borrow. I still feel like I can't get a lot done in between taking care of diapers and pumping but I do have time to do a little clean up at a time. Its crazy how much stuff piled up at home and then add that to all the stuff we got from the hospital. It was a lot of clean up. 

Today we gave him his first bath at home and got him all dressed up for church. I am amazed at how tiny his clothes are. When we first got the newborn outfits I was thinking there is no way he'll be that small. Now that he is here and wearing them I'm amazed at how big some of them are on him.

Aftermath of his first bath. He loves being wrapped up tight.

His Sunday Best!

Also you can follow his feeding tube from his nose to the mini-backpack. That is basically it, where ever Lincoln goes mini-backpack goes as well. In fact yesterday we all went out to Smith's to grab a few items that we were needing and it wasn't bad at all. I just wore the backpack and carried the car seat while we grabbed the 3 things we needed. No biggie. 

Last night Melanie & Clayne came over to see Lincoln. 

Clayne enjoyed holding him for the first time. 

I'm Coming Home

Today was the day. It was finally time to send us home. Ryan started the morning off around 5am getting up and going to work at Glenmoor Golf Course. I started my morning off around 6am with a cranky baby. He settled down around 7am and I went back to sleep for another hour before I had to get up to pump.

Once I was up to pump at 8am my morning did not let up until about noon. We had doctors coming in and out all day trying to get everything in order to discharge us. One of the things they had to do was a car seat trial to see if Lincoln could handle being in a car seat. They sent the car seat safety specialist up to check out our rig and make sure we had everything sized and installed correctly.

Lincoln during his car seat trial. He had to sit in his car seat for 1 hour and keep his stats up high. 

Around 12:30 Deanna and her whole crew came over to visit. They had come up for a reunion in Park City and stopped by for a quick visit. It was a good thing it was quick because we were all laughing so hard I'm pretty sure the nurses were going to have to come tell us to turn down our volume. It was so much fun seeing them all, especially my cousin Riley who just got back from his mission in Brazil.

At 1:30pm our home hospital nurse, Dylan, showed up to teach us how to work our feeding pump at home. Dylan is an awesome guy who will be taking care of us until Linc is cleared to get off the NG tube. I don't even have to put in any more tubes if I don't want to. I can just call him and he or someone else will come do it for us.

Finally it was time to go home. We got Lincoln all dressed up. First time wearing clothes in his life! Ryan picked out the outfit and I must say I was impressed with how well he matched it.........

.....to himself!!!!

Family picture leaving the hospital. I felt a little left out. It guess I need to get me some Notre Dame gear soon.  

Lincoln looks so tiny in this. I can't wait to see how long it takes him to fill it up properly. 

All snug in his bed for the night. The red backpack will be in pretty much all of his pictures since that is his feeding pack. Everywhere he goes it goes. 

We are now all under the same roof and loving it. Tonight we took him upstairs and had him lay in his stroller while we all just sat outside. A couple neighbors stopped by to check out the new kid on the block. It was so wonderful to sit outside in the nice summer night air. I am loving being home. 

Just Another Day

Yesterday was a nice relaxing day, mostly because Ryan had the day off so he was up with me from sunrise to sunset.

Ryan's friend Brian Soulier came by to visit. His visit was interesting because he has done some work in ORs for his schooling and so he was very interested in all the medical things.

At 4pm our nurse came in to give us the NG (feeding tube) education. Since I will be Lincoln's primary care giver I was the one who had to learn it all and try it. It was very overwhelming but they taught me well and I believe that I can do it again when the need comes.

Our nurse Laura teaching me the ins-and-outs of  placing the NG.

Placing the NG for the first time. Lincoln was not too thrilled.

Good thing he loves his pacifier so he calmed down pretty quickly. 

Not too happy with Mom. 

After our educational class with Nurse Laura my dad, Darla, and her sister Tam stopped by. Dad was very hesitate to hold Linc but once he got him in his arms he was ecstatic. What a proud new grandpa.

Ryan and I finished the day off by finishing watching X-Men 2. I have found that pumping is more entertaining with movies. Thus Ryan went and got me my home breast pump and so now I sit in my room with a good movie on and pump. 

Swallow Study

Today was the day for the swallow study. Because Lincoln's coarctation was close to the muscles he will use to swallow we had to test that he is strong enough to swallow before we can take the feeding tube out. 

The swallow study was pretty cool to watch. They let me stay right next to him the whole time. The speech therapist put him in a little chair and fed him special formula that they could follow on the

X-Ray. It was neat to see his little mouth working on the bottle and trying to swallow.

They first gave him the thin formula. That didn't go so well. It went down into his lungs. So after that they tired "nectar" which is just thicker formula. He was able to get a lot down to his stomach with that. 

The bad news is he failed his swallow study. This means he isn't ready to swallow yet so we'll be working with a speech therapist at our house getting him to practice the swallowing. They will use my breastmilk but they will thicken it with bananas so he is able to get it to his stomach. This also means that Ryan and I will be learning all about feeding tubes tomorrow. We'll learn how to place it in his stomach, how to give him his pain medicine and how to give him his nutrition through it. 

Today I've already given him Tylenol and his Lasix (the stuff that keeps things moving along in his system) in his tube. I have to admit this minor setback really took me for a loop. I had to go find a quiet place to be alone for a minute and cry. Feeding tubes just sound so scary and I just wish he could go home all better. But that isn't the case, thus I just have to toughen up and learn all about this next step. 

In about 2-4 weeks we'll come back to Primary's to do another swallow study. Hopefully by that time we'll have worked with the speech therapist enough that he will pass with flying colors and we can finally get rid of his NG (feeding tube).    

I have to admit seeing him sitting in a chair all by himself was super cute. 

Lazy Days

Today has been a spectacular day.

Well last night was interesting. I told Ryan that he had to get up with Lincoln since I had to get up to pump. Ryan did pretty well, but honestly the nurses did better. Maybe that is because they were the ones to wake Linc up with all their checks. It was interesting to sleep in a "bed" with my baby and husband by my side.

This morning we woke up early for my pumping session and our first visit with the speech therapists. She came in and showed us so many interesting things that will help Linc nurse better when the time comes. He will have a swallow study tomorrow sometime and after he passes that we can begin bottle feeding. Hopefully get that feeding tube out. I really don't want to go home with a feeding tube.

After the speech therapist we met with the hearing specialist. She tested his ears to make sure he is hearing ok and processing what he hears. It was a long process because Lincoln kept pulling the ear probe out. Also during this time Melanie and Grandparents Maxfield showed up for a visit.

After another pumping session Ryan and I headed out of the hospital for my 2 week post C-section appointment. We made perfect timing. We got there at exactly 1:20 (my appointment time) there was a sign up saying she had a pending delivery meaning she could get called out at any minute. Lucky for us she got called out at the end of my appointment and everything looks good. The only problem now is my 6 week appointment is scheduled for September and my insurance only goes through August :-S we'll see what happens there.

When we got back to Primary's we both had just enough time to cuddle Lincoln before Ryan had to head off to work and I had to pump AGAIN. Ryan left for work and since he also works tomorrow morning and evening he'll just stay home and get everything ready for us. That means I am single parenting it up. Trisa came and visited bringing me a Frosty as well. It was fun to share some experiences with her since we've now both had children at Primary's and in ICUs.

I have to admit I didn't realize how much teamwork it was taking us to care for Lincoln. Seeing how we have a nurse constantly on call I didn't think it would be that hard but it was so hard leaving Linc to go pump and then again to go get dinner. Lucky for me he calmed down and went to sleep at the last possible minute so I could do the things that I needed without feeling bad.  

As hard as it has been it's also been wonderful to have Lincoln to myself. No nurses, no visitors, just mommy-son time.

Just Mommy and Linc 

I was dying with how much tape residue was left on Lincoln. So I kinda begged the nurses to bath him and get it all off. This is what he looked like after the bath....he did not know what to think for several minutes.