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. 

Hurry up and Wait

Today we walked in to the hospital to find all his tubes and IV's out! The only thing left in little man Linc is his oxygen, his feeding tube (which is now in his stomach), and his chest monitors. The chest monitors will be on him until he is discharged. They just are the basic life stats ( heart rate, respiratory rate, oxygen saturation, blood pressure etc)

 His bed looks so nice and empty now. We were also told that today would be the day to go up to the "floor." The floor means the recovery rooms where we wait to be discharged. He is no longer in critical condition. WOOT WOOT LINCOLN!

We waited all day long for a bed to open up and at 5pm one did. We are now officially out of the CICU. I can't explain how happy this makes us. 

Ryan showing off the new digs. 

On the floor we are left alone more. Its our own room with a closed door, a pull out couch, a bathroom and shower. It is basically our own little apartment. In the CICU we had a nurse always over our shoulder, which was nice because that was what Lincoln needed, up here we are more on our own. We've already changed two diapers by ourselves. (Savanna 1 Ryan 1)

 They encourage parents to stay as much as they can so I plan on living here with Linc until he gets the go ahead to go home. 

We are so excited. Lincoln seems to keep getting better and better.

To end the evening we had Grandma Darla come bring us a few more supplies for the night. She was so excited to hold little man Linc. 

Good News

Last night was the first night in what seems like a long time that Ryan and I felt comfortable in leaving Lincoln with the very capable nurses and going home to sleep. I am always uncomfortable with leaving him but we know we have to sleep and home is the best place for it. So home we went.

Whenever we have slept at home I call the hospital for an update every time I get up to pump. The nurses never make me feel stupid or like a bother which is lovely and getting those updates help me sleep just a tiny bit better.

Today they took out his ventilator and a lot of other tubes. Yesterday was also a big tube removal day. He now looks like a normal baby when he is in his little burrito. Today was also the first time I got to hold him since surgery. LOVELY! Another thing that happened was they took him completely off his sedation and his pain medicine. They can still give him pain medicine when he needs it but no constant drip. Currently the only tubes going in him now are: fats, breast milk, an antibiotic and a flush to keep the PICC line open.  That is is. Only 3 IVs and a feeding tube for the breast milk. This morning he had several more and yesterday he had a ton more. It is crazy how fast they are moving him off his stuff.

Our little man is making very great progress. Tomorrow or the next day he will get moved to the "floor" which means the regular hospital rooms, not the ICU. We'll have a nurse who covers multiple kids at a time so she/he will leave us to ourselves for the most part. That also means we'll get more parent work in. Currently we aren't even allowed to change his diaper since they have to weigh it.

Having him off his sedation medicine has made a huge difference. Turns out our little man is not a very good sleeper. Also his ventilator rubbed over his vocal chords so he has a very weak and scratchy cry. When he coughs or cries it irritates it and so he has been a very cranky baby today but at least I get to hold him and comfort him when he cries. A couple nights ago he was wide awake and looking around, thus Ryan and I were right up by his bed and the nurse told us to back away and not touch him. She told us this to protect Linc, his chest was still open and his heart rate was getting high with us stimulating him but it was the hardest thing to be told to move away from your baby and not touch him. I am so thankful for the opportunity to hold him. Having that restricted for so long has really made me appreciate it and all the other little things.

 I finally got to hold him again today! I was pretty darn excited!!!

 Ryan has the touch with putting Linc to sleep. Guess who will be up when Linc can't sleep...not me!

 Fortunately, our nurse was a budding photographer and took some decent shots. Our little family.

Getting a taste of parenthood with a non-sedated baby. The previous 10 days Linc has been sedated or coming off an anesthesia, so he's been pretty calm, but he was trying to scream today. His vocal chords had been affected by surgery and the ventilator, so he sounds pretty raspy. It was cute. We love him soooo much!!

Linc's Surgery: The Unofficially Official Story

Before you read this post it might be nice to refresh yourself on what we are dealing with from a previous post.  Click here to read up on that.  That is the post explaining the problems they found when I was about 22 weeks pregnant. 

  Savanna and I have learned a lot over the past 10 days being in the hospital for days at a time talking with the nurses and doctors. Fortunately, we've had so many great people take time out of their busy schedules to sit down and explain things so that we fully understand what's going on with Linc.

     This morning, Dr. Eckhauser came by to fully explain the surgery he performed on Lincoln. He did explain a little bit of the surgery right after, but we just heard him say, "Linc did great." And then didn't quite comprehend too much after that. Anyway, I'll try to go through what he explained to us so we can all understand.

     On July 24, 2013, about 7:45AM Lincoln was given an CHG bath (a wipe down with a heavy-duty antibacterial wipe) by the nurse in the CICU. He was also being connected to the mobile monitors so he could be taken to the OR. Once that happened, we all travelled out the CICU to meet the anesthesiologist. By that time little Linc was awake and wondering what was going on. The anesthesiologist explained what he was going to do and assured us he would be with Linc the whole time. We said our goodbyes and Linc was taken to the OR.

     About 8:40AM the surgeon, Dr. Eckhauser, came in to the waiting room to see if we had any questions and said he would be scrubbing in to begin surgery around 9:00AM. We were given a pager so we could get updates.

Here is a simple diagram of the heart to refer to as you read. 

      The first update from the OR nurse told us Linc was completely under and was on bypass around 9:45AM. Dr. Eckhauser said for the bypass machine to work with such a small body that a blood transfusion would occur. IVs were placed in his superior and inferior vena cava's as well as one of the branches off the aorta. The bypass machine connects to the top and bottom of his heart. The blood continues to flow through Linc's body like normal except when it gets to the heart it is directed into the machine thus 'bypassing' his heart and lungs so doctors can work on Linc's heart. The miracle of modern medicine!

     In order to perform open heart surgery, Dr. Eckhauser split the sternum down the middle from the top of Linc's chest (where the collar bones meet) to the bottom of his ribcage. From Dr. Eckhauser's perspective looking directly down on the heart, he sees the right side of the heart. He noticed there was some bruising and hematoma (tissue clotting) on the right ventricle wall. This was kind of a surprise, but since Linc had chest compressions for 12 or 13 minutes at birth, it made sense to the surgeon. The bruising didn't give the surgeon the best place to attach the patch, but the bruising will heal and be fine. Linc's ventricular septal defect (VSD) was located pretty far up the ventricular septum near the aortic valve and pulmonary valve. It was also very close to the tricuspid valve (the valve letting the pumped blood from the right atrium travel down to the right ventricle). Obviously, Linc's heart isn't huge, but his VSD was quite significant for Linc's size and was slightly more difficult for the surgeon to patch. His VSD was around the size of a quarter. Dr. Eckhauser used a material called dacron to patch Linc's VSD. In order to fix Linc's VSD, Dr. Eckhauser had to work through Linc's tricuspid valve (valve letting pumped blood from right atrium down to the right ventricle). The top of the patch was sewn to the tricuspid valve annulus to the edge of a chordae (rope-like tissue that makes sure the valve doesn't swing too far back) and the bottom part was sewn directly to the muscle.

     After fully patching Linc's VSD, Dr. Eckhauser also shrunk an inherent atrial septum defect (ASD) to all babies. This ASD naturally closes as babies get older, and Dr. Eckhauser expects this ASD to heal itself.

     Once the septal defects were fixed up, Dr. Eckhauser began to fix Linc's aorta. Linc's aorta (vessel sending oxygenated blood to the body) was very skinny throughout the curve and then got even more skinny as it finishes the curve (aortic hypoplasia and coarctation, respectively). How Dr. Eckhauser fixed Linc's aorta was by making an incision through the hypoplastic part and cutting out the coartation, then by sewing on a pulmonary artery cadaver piece he expanded the aorta. All fixed up!

     Once surgery was completed at 1:00pm, a transesophageal echocardiogram (TEE; an echocardiogram with a camera down the throat) was taken to check the fixes. The VSD was fully closed and the aorta was completely fixed; however, Dr. Eckhauser noticed the tricuspid and mitral valves had some back-leaking (this is trivial). One thing he said to watch for was the Left Ventricle Outflow Tract (LOVT; the opening of the aorta from the left ventricle). It was skinny before surgery, and only slightly expanded after surgery, but it should still be larger and is expected to grow with the fixing of the VSD and as Linc gets stronger. There is no significant difference in pressure from the ventricle to the aorta, so it's not a big deal now.

     Because of the traumatic surgery Linc went through and because of all the fluids they were pumping him with, he was pretty swollen after surgery. Because of the swelling, Dr. Eckhauser kept Linc's chest open for a day and a half. Using a specially treatment protective wrap, Dr. Eckhauser sealed Linc's chest and then added layers of antibacterially-treated gauze. Linc kept this chest cover on until Dr. Eckhauser came back to close Linc's chest, which he did today.

     From what I understand, because Linc's sternum was split in half, it had to be tied back together. Using [surgical] stainless steel wire (probably similar material to Cutco knives), Dr. Eckhauser sewed Linc back together. The stainless steel wire will stay in Linc forever. His bone which is mostly cartilage now will grow around it like a tree around a wire.There were also a number of other layers of stitches to close Lincoln all up. Now Lincoln is officially on the road to recovery.

     We will be meeting with Dr. Eckhauser in a couple weeks for a surgical check up and a few weeks after that we will meet with the cardiologists again. We will probably be meeting with cardiologists for most of Linc's childhood and adolescence. If Linc has a recoarctation, it will only require a catheter to balloon the aorta. No more surgeries!!