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!!

Hard Day's Night

I promised myself I would be honest. Here is my honest post. If you want to skip down to the update I put that in bold. I won't be offended because I won't even know.

This is a hard thing we are going through. We don't get much sleep, pumping is hard, and to top it all off I've hit the teary days post baby. I work hard to stay positive and some days are better then others. Today was a rough day.

When Lincoln was stable at the beginning we would go home and sleep in our own bed. I'd get up to pump and would call the nurse to get an update. Since he went through surgery he is still too unstable for me to feel comfortable leaving so we sleep at the hospital, but its not much sleep because I worry so much over how he is doing. I can't wait for him to be stable again so we can sleep easier. In his room there is a very comfortable chair that reclines quite nicely. We hunted it down in fact. So every afternoon I conk out on that for a few hours or minutes depending on how loud it is. The hospital staff has been so sweet to get us sleep rooms and help us out anyway they can. We recently found out there is a hidden slushie machine that the nurses use as a pick-me-up during the night shift. :)

I was so scared I would not be able to breastfeed because my mom struggled with it before finally just giving in to formula. Lucky for me everything is working right so we won't have to do formula. The only thing that I hate is the fact that every couple hours I have to go to a tiny closet or up 2 floors to a stall to pump. Ryan and I calculated that I spend about 4 hours a day in the "pumping station" as the nurses call it. That is a lot of time away from my baby and visitors. Its also a lot of time alone which is long and boring. I will admit that I've been lucky with pumping because we've been at the hospital so long (10 days now) I have had lots of resources who have helped me make the most of my pumping. We'll see what happens when Lincoln starts to actually breastfeed.

The last thing that has been tough is I am dealing with the hormonal change of post pregnancy while also dealing with lots of heavy ICU stuff. I was fine until they told us about his surgery day being pushed up to Wednesday. It all went downhill from there. Now I've reassured Ryan and the kind nurses that it is mostly just me being emotional and I'm really fine I just cry at everything. I mostly just tear up a lot. I teared up over chicken nuggets, I teared up over putting Batman socks on Linc, I teared up over not having a shower. I do cry, often at night, where it just hits me at how unfair it is that this little innocent child has to suffer through all these things. But then I have my loving husband to lean on. He has been so good at comforting me and getting me to calm down when I get hysterical. I am amazed at how strong he has been for me. I could not have done this without him.

Today was a hard day for me. I had to spend the night alone since Ryan had to go home so he could work early morning at Mountain View Golf Course. It was hard to say goodbye but I tried to be strong. Its important that Ryan keeps working and we're blessed that his jobs have let him have so much time off. After a rough night I woke up early to send my son into surgery again. This time they turned his CICU bedroom into an OR instead of wheeling him away. It was still hard to think of him on the operating table.

Lucky for me my aunt Jill and her family came to visit with me during the hour and a half wait. Jill, Craig, Kela, Rachel, and Kate kept me entertained. Sarah their oldest went to the Salt Lake Temple with their family reunion to do baptisms.

After their visit is when I really started to feel fried. My dad came but I had to go pump, then we had a meeting with Dr. Eckhauser so he could explain with pictures what happened in the OR. After the doctor came I scarfed down a bagel and cream cheese before jumping in the shower up at the Ronald McDonald Living Room. Then the unthinkable happened. I had given Ryan a list over the phone of items I needed for the next day. Ryan being the good husband that he is grabbed everything I told him to grab except he misunderstood me over the phone. He thought I said to bring my "hospital pants' (I kinda stole some hospital scrubs) but in actuality I asked him to bring me my "hospital panties" (I don't want to ruin any of my own). So there I stood after a lovely hot relaxing shower, I was overdue for a pumping session (Ladies you know what happens there) and I didn't have any underwear to wear. I started crying hysterically. I had completely lost it. I was over tired and over stressed. I quickly dressed in what I had and ran downstairs to pump again. After pumping I just needed to sit by my baby for a few minutes and calm down. But before I could do that I needed to eat so I could pump again in an hour. I ate faster then I thought possible (and I'm a teacher...we know how to eat fast) and rushed up to his bedside. I felt like I hadn't seen him all day long. Which I hadn't. As I sat by his bed I just felt that sudden calmness that makes you slow down and enjoy the moment. I just stared at him amazed at how crazy modern medicine is and how many miracles we have witnessed. After that my day turned around pretty quickly.

I got my nap. I was able to laugh with my husband about his mistake. I spent the rest of my day by my baby's side.

As hard as being at the CICU is its also got its perks. We've got free slushies. We don't have to make our beds. We get free meals thanks to the McDonald Living Room. We're meeting tons of friendly nurses, doctors and other staff. And the biggest perk of all is being able to forget all the chores in the world and just stare at my son without any guilt of what my house may or may not look like.


Update: 

Ok now for today's update on Lincoln since I know he's the interesting one. This morning at 8am Dr. Eckhauser stitched his chest closed. Everything went well. They expected him to digress a bit due to the new arrangement for his body. Linc did digress a bit but surprised the nurses on how well he is recovering. They're going to do a test run with his breathing. They'll turn the ventilator down and let Linc try to breathe on his own. This is one step closer to taking it out. The night nurse just told me I might be able to hold him tomorrow! I was shocked at that one since he still has tubes going in every single part of his body minus his left leg. We'll see what tomorrow brings.

The tux is gone. His chest is all closed up now. They put wires on his sternum to hold it back together since they split it in half for the surgery. The bone will grow around the wires. The human body's ability to grow is miraculous. Surgical steel can't stop it from growing. 

He opened his eyes more today. He kept them open almost an hour while the night nurse rearranged his bed and gave him a bath. I love when the nurses keep his wires and tubes organized. 

We also got a cute sign today from Child Life, as well as a cute homemade pillow.

I am amazed at the little things they do here that make such a difference. Yesterday we got a little teddy bear with a heart on it as well as a parents guide to all things cardio. We've also been given most anything we ask for. Forgot toothpaste, they've got it. Dry hands from all the washing and sanitizing, they'll grab you lotion. Fall asleep without a blanket, wake up with one on. This really is a top notch hospital. They plan for the whole family not just the patient. Thus if any of you are looking for a charity to donate to Ronald McDonald House is a good one or Primary Childrens is also worth their weight in gold. 

Sorry for the long rambling post but I had to be honest. Being a parent is hard, starting off parenthood in the ICU is overwhelming. But I have found that when I'm having a hard time dealing I start listing off the blessing and miracles we've seen and my heavy heart is filled with the calming Spirit. It sounds corny but its what I've found that really works. 

Thank you for all your prayers and other acts of kindness. Ryan, Lincoln and I have definitely felt the power and strength they give us.

Harry Potter Closet

Just so you know how tired we are listen to this. After surgery was over and Linc was settled in his room Ryan and I were both falling asleep standing up so we decided to take a quick cat nap in our sleep room. We entered the room, saw the bed and instantly claimed sides, fell in and were asleep in m mere seconds. Yup, Ryan and I both crashed on that little bed whose mattress is well beyond its time.
We were so grateful to have a place to lay down and rest we didn't notice anything until after we both woke up. Fun times.

9 Days Old

Little Man Lincoln is 9 days old. It's only been 9 days since he entered this world. Its crazy to think about that. For him its been a lifetime, for us its felt like an eternity. 9 days ago is when this whole thing started. That is as the legendary character Dora Winifred Read would say Crazy Bus.

This will be a quick update since nothing has really changed from yesterday which is good.

Last night around 10pm Lincoln developed a heart arrhythmia, which was an expected side effect of the surgery. They put him on a pace maker to smooth it out. They also gave him more fluids, turned down his temperature and gave him medication to help it get back in sync.

Today he started opening his eyes again and looking around. Also he is kept just sedated enough that he wiggles but doesn't move around. They like to keep him fidgety so he doesn't swell up too much but they don't want full on movements that would disturb his open chest and rattle things around.

It was so nice to see his clear blue eyes again, (I wonder if they will stay blue) but at the same time its hard because he always looks so concerned and worried. He has a very expressive forehead.

Ryan and I spent the night here in a lovely closet of a room. 

We ended up taking shifts with Lincoln. There is a chair that reclines pretty well in Lincoln's room and so Ryan took the first shift from 11-3 and I then woke up, pumped, and took over from 3-8. It was so comforting to know that Linc wasn't alone at all last night. Until he is sewn up he is not considered stable so we don't want to leave him for too long. 

When we woke up we ran home for a few hours to shower, eat and repack our backpack of hospital stuff. (computer, camera, chargers, munchies etc)

Today another fun improvement was we were able to put our own socks on Lincoln. We got these sweet Batman socks from our neighbor. They are Ryan's favorite article of clothing Linc owns. 

Ryan got a bit artistic with his pictures. 

Once again Linc's body temperature is kept very low so his heart doesn't need to pump faster then it can handle. Its so hard to touch a cold baby and not be able to do anything to warm him up. He likes it when I put my hand on his head so I did that a lot today.

Dr. Eckhauser came by while Ryan was away with his mom and talked to me about the plan tomorrow. He will close Linc up in his current room which will take less then 1 hour around 8am. This means that since Ryan works early tomorrow morning I will be spending the night so I can be here while they finish the surgery. After that it will be recovery time. Mr. Linc has been in limbo today since they can't take any tubes out until he is closed up tight. Dr. Eckhauser also informed us that before we go home with Lincoln we'll get a little class on how to take care of him. It will be a little bit different then a normal baby because his chest bone will take up to 3 months to fully heal. He also said he'd love to come explain the surgery again when we're both present. Thus tomorrow sometime Ryan will give his surgical report blog. 

We also had several visitors come by to see us. It was so fun to go up the Ronald McDonald Room and just get away from the hospital vibe. The McDonald Room feels just like a fancy house from the Parade of Homes. Its so clean and comfortable. 

Visitors included: Jill & Kela Hansen, Grandma Woodbury and several of my good friends Michelle Minert, Lindsay Dougal, and Kaelyn McDougal. 

Thank you for coming and taking us away from our stress for a few minutes. Kela especially helped by telling Ryan all about her summer adventures, rappelling in Zions and her journal. I was impressed with how well she handled herself in the hospital. She was very mature. Sarah (her older sister) was unable to come but did make us a card that brought smiles to our faces. I must admit I was amazed at her craftiness. The card was handmade and most impressive.   

The Pioneer Day to Remember

Today was surgery day. It was the day we had been looking forward to since we found out about Linc's heart defect. It was also the day we dreaded. I must admit it has been one of the most stressful and emotional days of my life. (It doesn't help that I've reach the weepy stage of post pregnancy.) After today it would be all about recovery but first we had to get through surgery.

Lets start with Tuesday.

On Tuesday we had been told that surgery would happen on Thursday. Around noon that day the nurses informed us that surgery had been moved to Wednesday because they had a big surgery planned Thursday and Linc was recovered enough to handle the stress. I was shocked at how unprepared I felt for surgery. I was ready for it to happen on Thursday but moving it up a day really took me for a loop. Luckily our family was flexible and everyone was able to come up Tuesday night for a Priesthood Blessing. We also got the word out quickly so family and friends could start fasting for us.

Around 5pm we met our cardiovascular surgeon Dr. Eckhauser. He came at us with a lot of information but also with a lot of patience. He explained his plan for surgery, the risks and then asked us to sign the papers giving our consent. It was such a feeling to give consent for our child. Its hard being in charge of another little life. The rest of the evening was full of different doctors coming in and explaining their parts in the surgery and getting us to sign paperwork. It was very overwhelming.

Melanie, Mark, Tyler, Melissa, Dad, Darla, Grandma Ann all came up to the room around 8pm to give Lincoln a blessing. It was a very special moment. The Spirit was so strong. The men first blessed Linc, then me and finally Mark blessed Ryan. I hadn't even thought to ask for a blessing for myself lucky my husband kept me in mind. The blessing really set my mind at ease. I was still frightened but I felt that peace that only the Spirit can bring.

After the blessing we all headed downstairs to chat for a few minutes. I love how my family can keep the humor alive during hard times. We had a few laughs before everyone had to go.

Ryan and I then went back up to Linc's room to get as much time with him as we could. Since we found the surgery had been moved we had both been holding Lincoln as much as possible. We knew that after surgery it would be awhile before he'd be back in our arms. Around 11:30pm we went up to our room for the night. We were very blessed to get a Ronald McDonald Room for the night. (That was another miracle since we asked late due to the change of schedule)

We had our own little family prayer before hitting the sack. I was surprised at how much sleep we got. (Another miracle) We woke up at 4am because I had to pump. We decided to just head down to his room and spend more time with him. We spent an amazing 3 hours with our little man. He spent the whole time in our arms.  It was marvelous.

We were still very tired. Both of us fell asleep while holding him for part of the time. 

Also the hospital was freezing today so all three of us was swaddled with blankets. 

Our first family picture with Lincoln not in a hospital bed. This was taken right before they wheeled him away.

At 7:45am the nurses gave him a sanitizing bath and then we all walked down to surgery. At this time Lincoln woke up and was just looking around, content as could be. The anesthesiologist met us in the hallway and explained one last time what he would be doing.  He then told us it was time to give our little man our love and send him down the hall. We both kissed our little one and said our goodbye. I thought everything was hard before but that moment took the cake. Especially since his eyes were wide open and so trusting. 

The nurses then took us to the surgery waiting room, hooked us up with a pager and let us settle in. We stayed there until the Dr. Eckhauser came in 45 minutes later to ask us one more time if we had questions and assure us that everything would be fine. Ryan and I then took our pager and went back up to our McDonald room to get a 50 minute nap. Once again as soon as our heads hit the pillow we were out. (Another miracle. After that nap we had a total of 4 hours of sleep)

Quick side-note: I had the craziest dream during that nap. I dreamt that it was surgery day and Ryan just flipped out. After taking away Linc, Ryan decided we needed to go on a cruise so off we went. The whole time we were on the cruise I kept trying to convince Ryan that we needed to get back to the hospital for our baby. Finally I found a family that was flying back to Salt Lake and I gave Ryan an ultimatum, I was flying back to be with Lincoln, Ryan could stay or come with me but I was going. I woke up with sea-legs. During our nap we got our first update on the pager. We cleaned up our room and went back to the waiting room refreshed and ready for the long wait. The surgery took 4 hours. 

Here are our updates. 

7:45am- We wheeled him down to the anesthesiology and said our goodbyes

8:30am-Dr. Eckhauser came in one last time to reassure us and get any final questions. 

9:00am- The doctor started the surgery.

10:00am-First OR update "he is on bypass and doing great"

11:00am-Second update "Repair is done, still on bypass, warming him up and waiting for an echo to confirm the repair is good" At 11:00am Dad and Darla showed up to wait with us. It was so nice having them with us even if all we did was silent individual work. Having family close really made all the difference.

Grandpa Davidson sat like this for the 2 hours he waited. 

12:30pm- Third update "He is doing good, off bypass, post op echo looks good, watching his swelling but probably will keep his chest open until Friday, surgeon will be out in an hour to chat with us about what happened."

1:00pm- Dr. Eckhauser came out and chatted with us. I'll be honest I tried to keep up with his explanation but after I heard that Lincoln had done well my brain kind of shut off. Ryan will give you a full surgical report tomorrow. 

Here is what I understood. There were a couple surprises but nothing they couldn't handle. One surprise was some bruising to his heart due to CPR at delivery. The VSD (hole in the bottom two chambers) was also bigger then they thought it would be, about the size of a quarter. The coarctation (the skinny aorta coming out of the top of his heart that sends oxygen rich blood to the body) was very skinny so it was a good thing that they opened Linc's chest up. 

They had talked about just fixing the coarctation through the side, going through the ribs and leaving the VSD to be corrected in a few months. They are very glad they didn't do that given the size of the VSD and the length of the coarctation.    

Lincoln's body was very swollen and they decided to keep his chest open until the swelling goes down. They will sew up his chest in the CICU (Cardiac ICU) hopefully Friday. His chest has a nice little vest on it to protect it from the outside world. 

Everything is fixed and doctors don't think he'll need any more surgery in his lifetime. They will keep a close eye on his aortic arch and his aortic valve (come back to the blog tomorrow for a more detailed explanation of that). But if those don't grow with him it will be fixed in a Cath lab and not an intrusive surgery. We have a cardiologist all set up in Chicago who will watch these for us. 

1:30pm Lincoln was back in the CICU getting all settled in. 

2:45pm We were finally invited back to the CICU to see Lincoln. I got a preshow since I had to go in and grab my pump stuff. 

Speaking of pumping today I felt like I was pumping every 10 minutes. It was so hard to leave Ryan and go pump as often as I need (not every 10 minutes but a little less then every 3 hours) We figured I spend 4 hours in the "pump station" (thats the name they give to the little closet I pump in) each day. That is a lot of time I don't get to spend with Lincoln or Ryan or visitors. I keep telling myself how important it is I pump and how lucky I am to have the ability to pump. 

Seeing Lincoln was a shock. I have to admit I thought I was prepared for seeing my little man, I wasn't. Its still hard to look at him (I blame my post-pregnancy hormones) I want to cry but I keep telling myself that every tube, every machine, every IV is there to control his pain and get him better.

His whole set up. I thought the rooms were big now with all his stuff we barely squeeze in. 

He's still as cute as a button. (I don't really understand that idiom) Ryan made sure they did not mess with his face. :) 

Mr. Lincoln looks like someone out of a Star Wars movie.

Tomorrow Dr. Eckhauser will be back to explain to us again what exactly he did in the OR. Hopefully with visuals. I'll have Ryan post our understanding on the blog since he is better at understanding all the medical jargon. I just want to know if my baby is safe and healing, Ryan wants to know what every IV is and why its there. Its a good thing I married a man that cares about the details so I don't have to. 

Hopefully we are out of the CICU soon and on the 3rd floor recovery room. Recovery should only be 10 days. Lets hope Lincoln can be home soon. 

We have certainly had a very stressful and long day but we have also had many wonderful spiritual reassurances and family support. We thank everyone who fasted and prayed for our little fighter. It definitely made a difference in our day. Lincoln is done with surgery but not completely out of the woods as you can see from the pictures. So keep us in your prayers and thoughts please. 

We love all the supportive emails, text messages, facebook posts and blog comments. It reminds us that we aren't alone in this fight. Thank you so much, feel free to keep it coming. That was a blatant hint ;).

20 Miracles and Counting

The night Linc was born I was pretty out of it, but when I got settled in my room it all came rushing back at me. I started to cry but that hurt....REALLY BAD. After I had my little cry my mind was suddenly focused on all the miracles that had happened. I started a list and was deeply touched by all the miracles I found.

Miracles with Lincoln
1. Knowing well in advance about his heart defect.
2. Being so close to one of the top peds hospitals in the nation
3. Having highly qualified cardiologists nearby
4. Being induced
5. Having Sister Esplin as my nurse
6. Failing to break my water the first three times
7. Breaking my water at the hospital
8. Being in the room closest to the OR
9. Staying calm during the chaos
10. So many wonderful doctors, nurses and other staff who worked quickly
11. Having Sister Esplin stay and notice right away that Linc's heart wasn't looking good
12. Having Ryan get to the room in time to say goodbye
13. Waking up with family close
14. The NICU team who quickly stabilized Linc
15. Not crying until now
16. Being married to the most wonderful man who takes care of me
17. Seeing Linc's chubby face
18. Feeling my mom's calming presence before, during, and after
19. Remaining positive throughout this whole pregnancy
20. Placing friends in every area of this event Tanner (a Jerusalem Center friend who was an intern in the OR) Christine, Katie(Marie's friend was my nurse's aid) Holly(the BEST NICU nurse ever), Ivonne(the best recovery nurse ever)
21. Cell phones to call Holly every hour to check in on Linc

That was my list as of last night. Here are some more miracles that have happened.

22. Having the men in our family give Linc a Priesthood blessing tonight
23. Mom and Dad receiving blessings to help us get through the night
24. The Ronald McDonald Room had a bed for us last minute today
25. Feeling my Mom's presence at the blessing and know that she will be taking care of Linc tomorrow
26. Technology that allows Marie to know what is happening within seconds
27. Being able to hold Linc for hours on end here at Primary's
28. Having doctors who are confident in their ability
29. Not having any more surprises 
30. Holding Linc as much as I want 

I have no idea what tomorrow will bring. All I do know is that we have been blessed and this little man has already taught me so much. I also know that Heavenly Father is aware of our little man and prayers have brought forth so many miracles already. 

Lincoln you have a big day tomorrow. We are all praying for you.

Now not to be too serious. Your Daddy has to always make me laugh. 

I love him and am so glad he is by my side in this trial. I could not get through it without him. 

........even if he is a dork ;) 

Surgery

We were told yesterday to plan on a Thursday morning surgery. We had planned it all out. The family had all been told. 

About 10 minutes ago we were informed that his surgery has been moved to tomorrow (July 24th) at 7:30am. This really caught me off guard. I knew from 15weeks of pregnancy that my little boy would need open heart surgery but being told that it is less then 24 hours away is a shock. 

Tomorrow morning the cardiovascular surgeons will open up his heart and fix his VSD and the aortic arch. Hopefully after tomorrow he will be on the road to recovery with no more surgeries ahead. 

Please pray for our little man Lincoln.  

Transfer Day

Today was moving day for the little Linc-ster! Early this morning, Lincoln packed up and said goodbye to all the nice people at the University of Utah NICU. He had a nice helping crew who also packed him up in a cute incubator to take him to Primary's Children's Hospital.

 Linc looking around his temporary home to get over to Primary's

Linc got an MRI today to take a look at his brain. Another successful test! He has a good brain!

We've been able to hold our little guy a lot recently, now that he's not being cooled and heavily monitored. He is so stinkin' cute! 

He doesn't open his eyes very often, but when he does, he loves to look at his Daddy and me. 

Dad holding his man-cub.

Today, at Primary's we were told that we could feed him with a bottle instead of feeding tubes. I got pretty excited knowing that I could relish in my hard work pumping. It was amazing feeding my little baby boy. It took him a couple tries to get the sucking and swallowing down, but he ended up guzzling down the tiny amount the nurse let him drink. 

Ryan asked how much babies sleep during the day and the nurse said, "About 20 hours." I guess Ryan thought that was a good idea. Like son, like father.

My favorite thing about today was being able to hold and cuddle my baby for a few hours. It feels so good to have him close.

It was the Best of times it was the worst of times

Last night was the best night of my life....it was also the worst.

 We had been told that we could hold our baby around 3am July 20th. We were both so excited. After my 3am pumping session we took the milk down to the ICU to store in the freezer, then we got the sad news that they had to wait seven more hours for his monitors to get the correct information before we could hold him. This left us pretty upset because I was scheduled to be released that coming night. All day we held our breathe waiting to see if it had been long enough. We got word that by 10pm that night we could hold Linc. The only problem was we were released at 7pm and I was dead tired from having a sea of visitors come last minute. Lucky for me I married the smartest man ever. He remembered that there are a few over-night beds in the NICU and got one reserved for us. We settled down for a quick nap and woke up just in time to go see Linc. At 10pm they removed most of his head monitors with this awesome stuff that doesn't pull at the baby's skin while they take off the tape. Pretty soon it was time to hold our little Lincoln.

Before taking off the head monitors. Daddy was a little excited ;) 

I got to hold him first. It was a feeling I will treasure forever. Theres something so special about holding all 7 pounds of my child. 

As soon as he settled in my arms he opened his eyes up and just stared at me. All week we've been trying to get a glimpse of his little eyes but he's always been tired when we've come down. Linc's never been fully awake for us. We think he chose the perfect time to show us his little peepers. 

He just stared at me for a good long time. It felt like forever to me, yet it wasn't long enough.

I am so blessed to have such a beautiful baby. 

After I held him for a good time Ryan got his chance. I felt bad but Linc had fallen asleep in my arms so Ryan didn't get any stare-action but we know we have a long time with this fellow.  It won't be long before we're praying for him to close his eyes and let us go to sleep. :)  

My boys! 

BEST MOMENT EVER!

Last night was one of the best moments of my life. It was also one of the hardest. I knew leaving my baby at the hospital would be hard so I was prepared to feel sad. Actually feeling that emotion was tough. Sad doesn't begin to explain it. It was so hard but thankfully I had my dear husband and an amazing nurse to take care of me. Ryan was so good. He let me have my cry and just held me. I am falling more in love with my husband every day since we had this baby.

We also had the most amazing nurse ever, Holly. When she was with Linc you can tell that she loved him. Holly was the night nurse Friday night and last night so we had seen how she worked and felt confident in her ability. When she was taking off the monitors she was so sweet with Linc. Before we left she reassured me that calling every ten minutes was perfectly acceptable. Probably not the best sleep-wise. I ended up calling almost every time I pumped. When we were at the hospital Ryan would run the milk down to the NICU freezer and check up on Linc at home I needed that same reassurance that he was doing ok. Holly never made me feel silly for calling she was very empathetic to how hard it was.

All in all last night was tough but I got through it thanks to good people and the opportunity to hold my baby.

3 Days Old

I just wanted to make a quick note of what has been happening here at the University of Utah Hospital.

• Tuesday
• We were induced and Linc was born!
• Linc was put on the Cooling Treatment Study

• Wednesday
• Linc got an EEG to check for seizure symptoms
• He got off his oxygen ventilator and put in the nose oxygen just to remind him to breathe.
• Linc got a blessing from Ryan, Grandpa Davidson, Grandpa Woodbury, and Mark.
• Dr. Edmunds and Dr. Conway explained what happened in the emergency C-section
• Visitors included: Melanie & Clayne, Darla & Dad, Uncle Mark, Aunt Melissa, Uncle Tyler

• Thursday
• The EEG came back normal, so no seizure symptoms
• Ryan sat in through rounds and heard the doctors report on Linc's progress
• Dr. Manuck explained what happened in the emergency C-Section
• Dr. Stiers and Dr. Patel explained what happened in the NICU right after delivery
• Linc started getting knee bruises from wiggling his bum in the air during tummy time.
• Visitors included: Melanie & Clayne, Darla & Dad, Grandma Ann

• Friday
• Ryan got to lift Linc while they changed his sheets
• Savanna got to change a diaper
• Savanna met with the lactation specalist who gave her lots of helpful information
• Linc opened his eyes for a second
• They started warming him back up at 9pm
• Visitors included: Melanie & Clayne, Dad, My Grandma Davidson, Trisa, Sheree, Aunt Rogene, Susie Smith (Relief Society President)

I'm still recovering fairly quickly. I am able to walk around and get up and down from the bed without too much discomfort. My milk has come in which is something that worried me to no end because of the struggle my mom had with breastfeeding.

Tomorrow around 3AM, Linc will be back up to normal baby temperature. We'll get to start doing more things with him (hold him, maybe try to feed him, etc.) Monday he has an MRI scheduled to check brain activity and then he will probably be transferred over to Primary Children's Hospital.

 Ryan wants me to clarify that the purple monitor is not a bow. It's monitoring the oxygen level in his brain. (Oxygen-saturation)

Little Linc 3 days old.