First weekend home

Our new life. I feel like we are bringing Lincoln home for the first time, again. Starting over with a new baby. And it has been joyful, exhausting, stressful, and soulful. It has been eye-opening and God-filling. I am thrilled to have him home and watch the big boys worship him in small moments and big ways. We are blessed. And he is readjusting to his new life, new heart, new medications, and a loud house :) The cardiologists call the PICU  "Vegas" because of its fast pace and the lights are always on. Lincoln's nights and days are all discombobulated, but that will work itself soon I'm sure.

This experience has taught me so many lessons. I knew I had amazing family members, friends, and colleagues before, but I now truly understand the powerful, unconditional compassion, concern, and love that exists there. And it has made me a stronger, better person. Thank you to all of you who have shown us the power of prayer. People who don't even know us have written thoughtful posts and prayed for our baby boy- that to me, is true humanity.

Teri Harmon came down to the hospital to teach me a stress-relieving TRE session -that is an altruistic gift that has helped me to deal with all of the stress and trauma. Tuesday after the first surgery, I joked with her that I hadn't lived trauma like most. Little did I know, a few days later I ate my words! Since my first two sessions, I have been using that technique to relieve my stress and pain. I highly recommend it for everyone and everyday stress.  Teri, you are the best!

This upcoming week begins our new marathon of appointments, education, and lab work.  It is a lot to digest, and pretty scary. The INR levels are so important in a little man of eleven pounds, so we will have to monitor him very closely. Every time he grows, takes medicine, starts food, or gets sick, his levels fluctuate. And each extreme is serious. If it is too low, he runs the risk of a stroke. If it is too high, we have to have him admitted into the PICU, reverse his INR levels, and hope there is no internal bleeding. But he will be ok. We trust and have faith that we can get through this, and it is a much better world than our prior situation of heart failure. We just keep thanking God that he is here with us.

And to all of you who have been "walking in our shoes" (thank you Atticus Finch) and have been there for us - thank you! Never did we imagine we would be in the hospital just shy of three weeks! We so appreciate the meals, treats, shopping, errands, decorating, laundry, visits, and offers to help. And we are forever indebted to the staff at Big Steps. The big boys have so much fun there, that it was an amazing diversion from the disconnect at home.  In Jackson's language, " Big Steps. Fun. Friends." We are blessed with a loving circle of friends and family. Thank you so much!

Home

Thank you all for your support, love, generousity, and sweet tokens of kindness. We are blessed by the outpouring of love. And we are thankful to be together tonight, back into the chaos and fun of three boys five and under :) we have a long journey ahead of us, but it is worth every step. Xoxo

Going home :)❤

We get to go home today!!!! Dr. Haw & Dr. Hilman both said that it is only because I am such a meticulous momma and they trust me with his Coumadin over the weekend (the labs are not open until Monday). They were cooing at Lincoln, which just melts me. All of the pediatric doctors have a love for kids, and it is so obvious in their interactions with Lincoln. I will not miss any of this, but I have truly appreciated getting to know the people who saved my baby's life.

Now I have to pack this room up - best packing ever!!!!!

TGIF?

Rounds went well this morning. We went over Lincoln's Coumadin schedule - we will be alternating doses to keep him at an even level. His weight was up slightly, and his levels looked great, so he will get to stay off of the LASIK. He took a bottle again last night, so he had 9 feedings again yesterday. They are taking out his central line this morning, and doing a chest x-ray to ensure everything still looks good. Lincoln has had it - his glass windowed-room has worn out its welcome. He's been fussier the past two days, and I think it just lack of stimulation.

Dr. Haw was not at rounds this morning, but the team is working on possibly discharging us today! If Dr. Haw agrees, we get to come home! We will still have to come in quite frequently, but that would be the most amazing news ever. Please pray that we can be discharged today!

12/13/12

Lincoln's INR level is back up to 4.0, which is within the range, but a bit high. Dr. Malcom, another cardiologist, said that will be very common throughout the next few months. I should not expect a consistent number, but a range of numbers. They are skipping a dose tonight and seeing how his score is in the morning. The good news is that we now know his dosage was too high, but still in a safe range. I am hoping the 1 mg from Wednesday will be good for his levels to fluctuate in a safer range. We will see tomorrow.

Lincoln did not gain any weight, but lost a few ounces. They took him off his LASIK to hopefully see a change in his weight. I am so disappointed because he had nine feedings yesterday and ate really well. So we'll see how the numbers look tomorrow.

Things are looking more hopeful for discharge. They keep talking about Saturday as a possibility, but I am trying to not get my hopes up and be disappointed. We are all missing each other so much. I can tell this has been hard on each one of us. We are more than ready to be reunited and start our new life as a family of five. Lincoln looks so much better already - he will really be a happy boy when we bring him home.

The staff asked me if I would be a parent future families can contact. I am so honored and would love to answer their questions from a mom perspective. I went to some of our friends and family for advice who unfortunately have undergone surgical experiences with their little ones. They were a comfort to me and gave me great advice. We are also going to join a new online support group starting in Grand Rapids. Hopefully we can learn from others and share our experiences as well.

This song has been an inspiration to me. It has resonated with our situation and how I have had to trust in God and the medical team to care for my baby boy. We may not always be comfortable with change, but there is peace in letting go of our fears. I will be working on that one for awhile :)

Phillip Phillips "Home"

"Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave is stringing us along
Just know you’re not alone
Cause I’m gonna make this place your home

Settle down, it'll all be clear
Don't pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found

Just know you’re not alone
Cause I’m going to make this place your home. "

Update

Lincoln had a great day- his INR level is 3.5 tonight and he had 8 great feedings today. He was kicking, cooing, and smiling all day, and it was his first day without any tylenol. I am hoping for his central line to come out tomorrow and maybe a discharge date this week?!

Day 16... 12/12/12

This morning, a neonatal baby died on our floor. He was not even old enough to see his due date. I  heard the mom screaming, and I can't get it out of my heart and mind. It really puts everything into perspective. I am so incredibly thankful that Lincoln is breathing, functioning, kicking, smiling, cooing, crying, and eating. While our road is difficult, it is possible. He is alive. Life is so fragile, yet completely taken for granted in so many ways. I hope I never lose the perspective that my kids' lives are a precious gift, and to truly enjoy every moment with them, no matter how hard that can be sometimes.

On a positive note, Lincoln took a bottle last night. They finally listened to me about not waking him up, but allowing him to demand food. And it worked! I hope that means the speech therapists will leave us alone. A mom can dream right?! He still has not gained any weight, so please pray he starts gaining soon. He is eating better every day, but we need for him to start showing signs of that.

His INR level jumped with the dosage increase two days ago. I have been nervous about it because it is such a gamble. If they increase it too much, they have to reverse its effects, and we start over. I love the pharmacist here - she speaks her mind and is willing to educate me by answering my questions. Today his INR is at 4.1, which is a little high,  but should even out by tomorrow. The goal has been between 3.5 & 4. I keep hoping that means we get to go home faster, but we shall see. Patience.....

I have had a lot of people ask about his valve. There are not as many options for infants and much depends on the attraction the body has to foreign hardware. His valve's surface is much less likely to attract blood clots, and it was easier to oversize, so hopefully Lincoln does not need surgery as soon. But most importantly, it was an emergency surgery where Lincoln almost died. There was not time for a discussion of valves, or time to wait for a different type of valve. My favorite nurse was on that day, and she continues to remind me how that day could have easily been a much more devastating day than it was. So we are thankful this valve works great, and he is a healthy baby. And we will be excited to see how technology changes for the next valve. I have complete trust and faith in our team,      and I know they saved my baby's life with God's Hands on our sweet boy.

I finally took a picture of his scar. It has already started to heal and peel, but it will be with him forever. It is a constant reminder of God's work in our lives, and how we can overcome even the most   devastating circumstances with love, faith, hope, and gratitude. It is also a reminder of how tragedy can truly show us who loves us and lifts us up. Thank you so much to all of you who have supported us and loved us. We are blessed, humbled, and lifted. Xoxo

Smiley boy

Much happier boy today :)

My rock star :)

Last night I came home sad again that I came home without Lincoln. It is a terrible feeling that I never understood until I experienced it. I walked in and saw a gift on the counter. It was the perfect reminder of how amazing Lincoln really is and what he has endured. My rock star! Thank you Rose- it is the perfect reminder to appreciate how far we have already come.

Happy Momma-

I feel like prayers are finally being answered in so many ways. The night nurse and today's nurse agree with me that the feeding tube and scheduled night feedings are ridiculous. As a mom, I feel like if he is hungry, he will eat whatever the source. He needs to gain weight though, so it is a fine line. They decided to take out the feeding tube and watch his weight gain the next few days.

This morning I walked in to find out his INR score has jumped to 2.4. Alleluia! That means, he gets the Heparin IV turned off and that line removed from his shoulder. The interesting part is they upped his Coumadin yesterday so we shouldn't see that result until tomorrow. They were perplexed by it and I really think it was our prayers being answered.

So today we need to focus on getting this little man to keep eating well and start gaining weight. He is cooing and smiling a lot, and has even started showing signs of a sleeping schedule. His eyes have changed to brown, his Mohawk has grown longer, and he started rubbing his eyes when he is tired. He is still feisty when he isn't happy, and still loves to snuggle. He is our sweet baby boy, and we feel so blessed to have him in our family.

My dad bought the staff here fine chocolates and made a sign thanking them for taking such good care of Lincoln. The staff has appreciated it so much and it is cute to see how a small gesture makes such a difference in someone's day. They truly care about their patients like I care about my students. When we invest our heart and energy into someone else's life, we remember them forever. So they keep stopping in to thank us and see how much better our little man is looking. Even Dr. Haw grabbed one before "the theatre" aka the OR :)

Great start to our day!! Xoxox

Seriously Mom?!

Lincoln is not a fan of the wires, tubes, dinging, and prodding. But he still has smiles for his momma despite the ridiculous feeding tube.

Monday morning

Zero change from yesterday. We are still waiting for Lincoln's INR levels to go up. They said they want to see it at a 2.5 before discharge is even an option, and he currently sits at a 1.6. They upped his Coumadin today, so we shall see how the next few days look. The doctors keep warning me about the effects if they overestimate, so I prefer the slow and steady approach to the fast and furious (even if it is depressing). I am really excited because I found a Coumadin app for my phone that charts his dosage, INR score, doctor appointments, medication reminders, and will even email a weekly or monthly chart to the doctors. It is pretty amazing. I also found another app that lists all of the risky medications, food, supplements, herbs, and explains why. Anyone that knows me is probably laughing because I love to organize. The doctors were laughing that Dr. Lacina is in trouble having to deal with me every day!

I am really nervous about the Coumadin INR levels because it fluctuates with everything. Teething, growing, eating, sleeping, illness, and antibiotics all affect the INR levels. The doctors keep warning me it will be a rough rest of the winter, trying to keep him healthy and adjusting his dosage. As anyone could imagine, that terrifies me. I have never dealt with a medication that is so inconsistent and risky. We have been told we should be able to get the co-ag machine, but probably not until the end of January. We will need training on it as well as ensuring its numbers match Devos' lab results.

So, I sit and wait. Patiently and impatiently, snuggling my littlest very tightly. I am thankful to have him here with us, grateful there are solutions, and hopeful that my family of five can be together soon. And we want to raise him as one of the boys. He may need extra care, attention, and precautions, but he will be a healthy boy. And we are so thankful for that this Christmas season. I no longer have to watch him in heart failure, and feel helpless. That is the best gift of all.

Sunday rounds

My spirits are down today. My prayers were not answered once again, and Lincoln's INR level went down, so instead of coming off of the Hepriln like I had hoped, they upped it. And the night nurse couldn't get him to take his bottle, so she put in a feeding tube, but never called me to let me know. Anyone that knows me can guess my reaction to that :) So I feel like we have taken two giant steps backward and I am beyond frustrated. The speech therapists keep coming by to watch him nurse and help with bottle feedings. I don't understand why he ate better with bottle feedings in heart failure than now, but I am trying to be patient with them and let them do their job.

Today has been rough emotionally. I am sad that my boys are getting the Christmas tree without me today. I am tired of living in a hospital room, never seeing daylight except through the hospital room window. I am angry that we have to go through this. I miss my boys more than I ever imagined. Mommy guilt is making me crazy- I feel like a bad mom no matter where I am. It sucks.

Two weeks ago, I was so fearful of the unknown. Two weeks later, I am snuggling with my sweet boy and his healthy heart. And he smiles, coos, and wants to be in my arms again. We have made progress, just much slower and more difficult than I ever imagined. I just want to bring Lincoln home.

Saturday rounds

Our sweet night nurse (former student Kelly Gormley FYI) worked really hard last night to get Lincoln to take a bottle, and as the night went on, he became better and better at it. I must say it was very strange having a former student caring for my baby, but he was in great hands and he even gave her a smile. Lincoln is known for his Mohawk around here, so she instantly smiled when she saw him, excited to care for the Mohawk baby. We really have been blessed with amazing nurses. Yesterday's nurse was our first terrible nurse, (which after twelve days and nights is pretty amazing) and I keep joking they do that so we will want to leave sooner than later.

Murph and I went out to dinner last night after leaving Lincoln snuggled in his bed with his night nurse, taking advantage of what could be the last date night for a long while. We are trying to reconfigure our new life, and had a deep discussion of our fears, hopes, and questions that we need to address. We both feel so blessed to have Lincoln in our family, more now than ever before. While life will be more challenging, we have a great support team at Devos and Forest Hills Pediatrics. We are so thankful that we chose Devos over Motts because we would not have developed personal relationships and such a thorough history together, and we would not have seen the boys for 13 days. I cannot even imagine.

It sounds like checkout is in the distance. We have to get Lincoln's Coumadin levels between 2.5 and 3.5 consistently, and every time they make a change, we don't see a difference for two days. So the change they made yesterday, we won't know how it affects his INR levels until tomorrow. And it currently is at a 1.3. Patience is being forced upon me :) We met with Dr. Mike and Dr. Lacina, our
regular cardiologist, and they both educated us on the uncertainty all of this has in store for us. Lots of doctors appointments, monitoring, and education for those in our lives.

My suggestion of moving Lincoln's potassium vitamin dose has made feedings today so much better! They are trying a different type that will be easier on his stomach. And today is Lincoln's first day without morphine, and he is doing fine. He acts like his an improved version of his old self, and that is the best gift I could have.

Friday rounds

This morning, the team had a good discussion about getting Lincoln's medications squared away. They are weaning him from the morphine this weekend (THANK GOD- I hate it), lowering his LASIK (for fluids), and still working on getting him off of the Heprin IV. His chest x-ray looked great, and they are pleased with how his heart is functioning. He was sleeping peacefully when I came in this morning, and has had some great smiles for me this morning. Dr. Mike stopped in and we discussed our game plan for the little man, as he is so developmentally behind due to his heart failure for the first three and a half months of his life. He was joking that most moms are bragging that their baby rolled over, and I can say "That's  all? My baby survived two bypass surgeries in one week. He's super- hero status now!" Everything else seems pretty minor in comparison.

His tummy still seems upset, so I am excited to see him off the morphine. The potassium he is on also can upset the stomach, so we can see which is bothering him once one is eliminated. He would not take a bottle for the nurses last night, which is strange because he has never had a problem with it before. He loves his pacifier now, and it hit me this morning that it was probably harder to suck on it before with his labored breathing.

The hardest part with coming home right now is getting his Coumadin situated and leveled. There are no signs or symptoms if it is not working, which is kind of scary to me. So we will be checking his INR levels frequently to make sure he is doing well because weight gain makes the medications less productive. And as most people know, infants (normally) grow rapidly, and even though we are excited to see him grow, it makes it more complicated on his heart. And it sounds like we will be getting the co-ag machine eventually, but the cardiologists have to write a letter explaining why he needs it, which I find somewhat ridiculous. So it could be a month or two, depending on how fast the insurance board acts. So pray that they get through the paperwork fast!

Thursday afternoon

Lincoln is eating! He has nursed for two feelings now today - the first one was rough, but he had only had the nausea meds in for ten minutes. The second feeding was great. He still has to get better and stronger at it, but we are so relieved that it wasn't something more serious. Ahhhmazing feeling.

He has also wanted to be in my arms all day. I've only put him down a few times, and it's amazing to see his old, divo self wanting to be held. So today has been a good day. We are thankful and relieved to see our sweet boy coming out of his whirlwind of complications and effects from two bypass surgeries. Life is good today, and this Mommy is feeling rejuvenated, thankful, and hopeful that we can all be home together soon.

One week later...

Exactly one week ago right now, Lincoln was prepping for surgery. What a difference a week makes.  I am so thankful that the doctors, surgeons, pharmacists, and nurses are receptive to my ideas and knowledge about Lincoln. Dr. Haw made a joke about how meticulous I am, and said we won't have to worry about dental work with this "Mum." Dr. Winters jokes about my notebook, and my list of questions each day. It is nice to see that they are receptive to our input and making jokes. Murph and I have truly appreciated the amazing care team we have here at Devos.

They are lowering his morphine today (my suggestion that Dr. Haw seconded along with the pharmacist) and they are trying a mild anti-nausea medication that has no side effects. So, I am hoping my mommy gut is right, and that will solve his feeding issues. The cardiology team also looked into my suggestion of a twice-a-day heart medication instead  of four times a day, and he will be starting that today instead of his Captapril. Once his  Coumadin levels hit two, he can come off of the Heprin drip, and we can start regulating his Coumadin INR levels. We can get one step  closer to coming home. He is currently at a 1.6. Hoping for a good day today, and we are so thankful for this sweet little boy of ours.

And when we walked in, Will, my favorite night nurse, had moved Lincoln into a crib. He looks so much cuter in a crib! We had quite a few smiles through his pacifier where you can tell is eyes are lighting up. So slowly, we are seeing sweet glimpses of our baby boy.

Small steps

Another long day at the hospital, but we are getting closer to our checkout - I can feel it (not really, but a Mom can hope, right?!). Poor little guy still won't eat, but is tolerating the feeding tube and digestion well, so I really think it is nausea from the weaning medication. Hoping to see a change tomorrow. He perked up a lot today, but is still really grumpy. I have a plan to bring up to rounds tomorrow morning and hoping it will work. His heart meds are getting closer to therapeutic levels, which is good. He cannot come home until they are consistent and more precise.

What many may not understand is that last Thursday, Lincoln's life changed forever. I am forever thankful that he survived his second surgery, but it was the worst day of our lives in many ways. His heart was fixed, but in a way none of us had hoped for, but dreaded. It is clear when we talk to the pharmacists, the cardiologists, the heart surgeons, the PA's, and the nurses, that this will be a difficult path for Lincoln. And for the next eighteen years, Murph and I. The medications he is taking have huge risks and side effects that we will have to watch every day for his safety and well-being.  His valve replacement means a unique life path that will make him different from his brothers, cousins, friends, and peers. It means we will be back in the OR at least one more time to replace his valve again. So we are sad, and we are overwhelmed by what this means for our family. And we understand now more than ever, just how important the core circle of friends and family are in our lives. This is yet another thunderstorm in our sweet Lincoln's journey, and we are humbled that God chose us to be his parents. What an overwhelming blessing.  Xoxo

Wednesday rounds

Oh goodness, where to begin? I have seen a Speech Therapist, Cardiologist, Dietician, Internist, and Lactation Consultant since morning rounds at 8:30. Lincoln still will not eat and has zero interest in it. In fact, he gets physically upset about it. And we cannot figure out why. All of the different medical perspectives this morning threw out different ideas, some of which brought me to tears. The good news is that when they tube feed him, it sits well with him, and he is now sleeping with a full belly. So, we are lessening his anti-anxiety meds to see if it is just making him too relaxed.

The good news is that the hospital is working on a home monitor system for us where we can pin-prick him each day to monitor his levels ( oh yay lucky me!). That will make it easier to sleep at night  for us to know that his levels are at a safe number. It can vary between 50 and 80, but we would like to keep it at a consistent level. Today we are at 65, so that is really good. A small interesting fact for the medically-interested people reading, Lincoln's heart now has a clicking sound that he can actually hear. We thought that was interesting. Everyone has been wanting to listen to his heart - we finally figured out why.

So, we shall see. More waiting :)

One step forward, two steps back

Little man had a great morning, but a frustrating afternoon and evening. He doesn't really want to eat at all. They think it is the withdrawals still, so they are putting in a feeding tube so he gets the nourishment he needs and upping the withdrawal medications. Once again, we are helpless and frustrated. Even worse, more medication to wean him off once again. The good news is he seems calmer and more alert, so we are trying to be patient. Trying to appreciate the small blessings- smiles today, and one feeding. Oh, and he loves his new room accessory. Xoxo

Tuesday rounds

The docs are pleased with how Lincoln is doing. His biggest hurdle right now is getting his Coumadin levels rights and getting his last central line out. They also took him off of the LASIK IV and are giving it to him orally now to see if he really needs it.

The best news of the morning is that I can feed him again! No more bottles! His fluid restriction has been liberalized and they all realized this morning  (after the nurse and I pointed out) that he's ticked off, not wanting the bottles from me. He was so happy to nurse, and he even gave us his first smiles right after. It is not easy to hold him, nurse him, or change his diaper with all of the cords and wires (he still has at least six), but we are learning how to maneuver him around a little better. So, this mommy is feel 80% better than yesterday- what a difference a smile can make!

We now hope that his levels stay consistent -his co-ag levels are extremely important to monitor and stabilize. Without them at a therapeutic level, he can have blood clots form to his mitrovalve and have a stroke. So this is the first step in getting his levels stable, and then we will have to check them weekly if not more, depending on how he does. They are still looking into a machine, but Dr. Mike thinks we will still want or come down to DeVos since it is such a serious issue. I would agree :)

Lincoln (and I ) will be on a strict Vitamin K diet, as it fluctuates his levels tremendously. Anyone that knows me well knows I love fruits and vegetables, which have an abundance of vitamin K. So I am mourning salads, broccoli, my omega-3 vitamins, and having to do  a lot of math with micrograms. The good news is Dr. Haw and the cardiology team requested that we have a good daycare center with educated, trained teachers, not just an in-home daycare. Thank God for Big Steps Little Feet where we will have the best care for little man when I have to go back go work. Thanks again for all of your prayers and support - it means the world to us!

Tough day mentally

I am exhausted physically and mentally. I am tired of watching my baby suffer. I am tired of leaving the hospital without Lincoln. I am tired of listening to the baby scream next door because his mother neglects him. I am tired of sitting in a dark, quiet room. I am tired of not seeing my boys. And for seven days now, I have felt helpless. Today, my baby boy is still not the baby I had to leave last week in the OR. I am sad, tired, overwhelmed, and ready to hold my baby where he looks at me with light in his eyes and knows his Momma. I know it is temporary, I know this too shall pass. But for now, I am so sad that my sweet boy has had to endure so much. And I am sad for us because unlike him, we will remember this hellish experience forever.

Busy day

Lincoln has had a busy day - X-ray, Echo ultrasound, and his two pacers, catheter, and central tube all removed. He only has one internal line left! Poor little man is sleeping peacefully finally after a busy morning of interruptions and painful removals. I have held him twice to feed him two bottles and changed his diaper (which is terrifying BTW). He is pretty fussy still from the withdrawal symptoms and probably his surgical wounds. He is very congested with each feeding, which makes it really hard for him to feed. We cannot wait to see him look at us with that big smile and talk in his happy coos. Right now, they sound like he is lamenting or yelling at everyone around him. He glares at the nurses when they come near him now- we joke he is going to be a grudge holder!

Dr. Haw came in again to check in on him between surgeries. He is truly a caring man, and genuinely  shows how sad he is that he could not repair his valve on Thursday. He told us that he normally is calm and collected during surgery, but that in the OR, they have a swear box. He joked that he filled it up on Lincoln's second bypass surgery. I think he is devastated Lincoln ruined his statistics, but had been so compassionate and apologetic (even though there was nothing he could have done).

Dr. Mike stopped by this morning, and gave us his pediatric perspective, which was nice to hear since he will be helping us along the way more than anyone else. He's been such an advocate for Lincoln, and we feel blessed that Lincoln has such an amazing doctor on his side.

Still working on the diet information. Those of you who know me well with laugh because two doctors have called me "meticulous" and are working on finding out how the medication and diet restrictions work with nursing. Usually, this medicine is used on older people, not infants. The pamphlet they gave me on one of his prescriptions is 34 pages long if that gives you an idea of how
serious it is, and how complex the process can be. But, we are trying to take it one day at a time. This Mommy  is just happy that I could hold my baby today. Small blessings. Xoxo

Monday morning rounds

Today was the first morning rounds where everyone had smiles and was pleased with how Lincoln is doing! Murph and I are elated. What a difference - doctors joking, nurses smiling, and positive goals being discussed. Last night he was having difficulty with his withdrawals and is still having symptoms. We are hoping it should be better within a day or two. Dr. Huntington stopped by to check on him, and said that withdrawals are very common, especially when he had two mjor surgeries in ne week. I think he was just as excited to see our content little man as we are!

He gets to have his pacer wires out today and possibly his central line, which is HUGE! That means that Dr. Haw and the team have complete confidence in his mitrovalve replacement and heart in general. His lung fluids and air pocket looked even better today on the x-ray, so they are talking about canceling the morning x-rays this week. He still has puffy legs and feet, but the team said that is normal and that the Lasiks will continue to eliminate that fluid. The nurse said that once his wires are out, I get to hold him (Murph keeps telling me not to get my hopes up -too late!). He ate four times over the night, which is also great news. He still has to take bottles because of his fluid monitoring, but he is loving the milk over pedialite. So another positive post! Praise God and all of the prayer warriors! Xoxox

Lincoln's Mohawk is back!

Sunday afternoon :)

Finally- some good news! Baby boy's blood samples came back negative for viruses, so we are out of the isolation garb! The doctors really think he is having withdrawals from the Fentanyl (he has six of the score factors) and since they have given him medication to help, he has been so much more relaxed and his eyes do not have that sad, fearful look anymore. Who knew we would be excited to find out that our baby is having withdrawals from drugs -- that is the crazy world we live in right now! Since then, he has had his first sponge bath, breast milk, and new linens. He is a new baby with his Mohawk back in style. He is finally sleeping peacefully and even the nurse can't believe the difference from this morning. Yay! Small blessings in a huge way.

And, I do not have to throw my freezer-supply of milk away, which if you are a nursing mom, you know how much work that is. I am working with the lactation ladies, a pharmacist, and Lincoln's team to figure out the best plan for my diet with his restrictions. Small steps, but at least we are moving forward.

Sunday morning

Every morning when we walk through Lincoln's room, we hold our breath and hope for good news. We have not had a morning yet where we walk into to hear that Lincoln is doing great. We are still waiting, and it is mentally and physically exhausting. This morning, Lincoln's cough is more congested, and he is in obvious discomfort every time he coughs. He had a hard time taking his oral medications, and clearly something is not right. He looks terrified and anxious, so they are wondering if he could be having withdrawals from the Fentynl. They are giving him a strong antibiotic to hopefully help him along and an anti-anxiey med to ease him and his nerves. They are testing him for infections again, which means he is in isolation and we all have to wear gowns, gloves, and masks until the results come back.

The good news is his heart and lungs look great. Dr. Haw is very pleased with how his valve looks as well as the minute leaks. Tomorrow they want to take out his pacers, which is a great sign of their comfort of his heart functioning. Pharmacy is going to come talk to us about lifestyle changes, nutrition, and breast feeding a baby on blood-thinners. Lactation is also going to come see me and help me to figure out my diet restrictions (so far, it looks like four pages worth). Between the two, I need to figure out what is more important -the antibodies in breastfeeding to keep him healthy or the consistency of formula for his co-ag levels. Lots to think about.

So more short-term complications for today, but hoping the afternoon will get better.  And hoping for negatives on the viruses, so he can see our faces again!

What really matters

In 2013, Murph and I will have been together 16 years. And despite going through Hell this week, our relationship has never been stronger. He and I (somehow) have managed to support each other through all of this, and became even closer. He has always been my best friend, but right now, he is doing an outstanding job taking it all on-  and holding it together while I fall apart. We are both realizing how so much in life just does not matter. When our baby is sick, nothing else really matters except trying to get him better.

We have realized that some people will not understand what we are going through and now that our life is in such chaos, we only need people in our life who will lift us up, who are here for us and our children. Thankfully, we are blessed with so many loved ones around us who do just that.  Eating dinner tonight, we were reading the blog comments, texts, and Facebook posts from so many friends and family members, trying  to lift us up. We are so thankful because that is what we need. "Family isn't always blood. It's the people  in your life who want you in theirs, the ones who accept you for who you are. The ones who would do anything to see you smile and who love you no matter what." And so many of you are now family. Xoxox

Lincoln's fight to live in his short four months has been excruciating for him and us. I found a quote on Pinterest that says "Every day may not be good. But there is something good in every day." That has been our mantra this week -even the small blessings need to be admired and cherished. So today, I laughed with my husband. It's the first time in weeks. And it felt great. And I comforted my baby boy in a way no one else can, not even the surgeons or specialists. All day long, he was alert enough to finally look at me with real eyes (not the dazed, doped-up look). And for those things I am grateful.

Saturday afternoon

I sent Murph home to take a break, so Lincoln and I have been hanging out with a new nurse today (who I have won over and she agrees Lincoln likes his momma close by).  This morning was rough. Still waiting to see if all of the fluctuation in levels were just a fluke or are something more serious. More waiting -something I am NOT good at. They will test again tomorrow and do more x-rays to see how he is doing. This whole experience keeps teaching me to stay in the moment because when I plan ahead or think what ifs, things change in the meantime and it was a waste of my much-needed energy. He has been off of his Fentanyl today and doing pretty well without it (hoping to keep him off of it-it is stronger than morphine!). His stomach was really upset and gassy, but after a suppository, he has been doing much better. His breathing is labored, but the doctor thinks the air pocket by his lung should heal itself. He took four one-ounce bottles of pedialite and has been more alert today than all week. His co-ag levels are in the therapeutic range, which is really good for his valve and heart. He is finally liking his pacifier again, which is really helpful to soothe him since we can't pick him up. His cough looks excruciating when he has to cough because of his chest. I guess it is normal and needed, but I feel for the little man every time. We are trying to keep our spirits up, especially for him.  Lincoln needs us to be strong to help him fight through this and start recovering. And Murph and I will need support from people who truly care about us and Lincoln's well-being. So many of you have just been amazing -we truly appreciate it. Xoxo

Breaking the rules...

Anyone that sits in with a group of teachers knows we are the worst listeners. So here I sit by Lincoln's bedside, holding his hand & comforting him when he cries. And it seems to be helping. If I try to let It go, he holds on stronger. Sometimes, Mommy knows best. And I even convinced the nurse to let me give him his pedialite bottle, and he sucked it down like a champ. They won't let him have milk yet because of his sodium levels, and his fluid restriction is still pretty high. We have had two wakeful periods where he just stares at me -the most alert he has been since Monday morning before his first surgery. Hoping, and praying.

Small world (FHC that is...)

I had to post this because we are all connected to so many people, even when we do not know it. Dr. Fitzgerald has been our doctor on the floor all week- his wife works at FH Pediatrics (Kathy Howard) and their daughter is a freshman at FHC. Today, Dr. Stoiko is working (father of Michael, Rachel, and Allisandra) and introduced himself to me as one of Allisandra's favorite teachers. He told me the kids at school are worried and praying for our baby boy as well. Our anesthiologist, Dr. Huntington (Kate's father) who was also in my Honors English class, has come to check on my sweet baby multiple times and helped me to understand some of the drugs Lincoln will be taking. Dr. Laughlin, Tory's dad, also helped in Lincoln's second surgery, and he too has shown compassion and concern every step of the way. We are incredibly blessed to have such good care for Lincoln, but to also have that human connection outside of patient protocol. My sweet boy is getting the star treatment he deserves.

Rough Saturday morning

Poor Lincokn just cannot catch a break. He has been struggling this morning in a lot of different ways. His sodium levels are still high, which the docs are investigating with further tests. He spiked a fever this morning, and they have brought his temperature down, but they are testing him for signs of infection to try and figure out why he has a fever. Lincoln also has air and fluid next to his lungs which are making him uncomfortable and have fast breathing levels. This can be from the chest tube being removed, so we are hoping it will heal itself soon. We are supposed to let him be today, and try to stay away from him because he gets so upset that we can't hold him. His blood pressure sky-rocketed early this morning when Murph was talking to him, so today is a quiet, dark room with little interactions to just let him heal and rest.

They are also trying to prepare him and us for his blood-thinner medication because it has a lot of side effects, dosage variety, and training that we need to be prepared for. I have to watch what I eat and drink with nursing because even that can affect his co-ag levels. So today, I am kind of a wreck for my baby's health short-term, long-term, and just getting him through this recovery. Right now, we are nowhere near the safe zone, and that is absolutely  terrifying. Every time we think positively, something slaps us down.

Today, Lincokn is four months old. I should be placing his sweet self on the calendar to take his monthly picture. I should be holding him in my arms and listening to him coo. Instead, I am watching  his vitals, listening to jargon I don't understand, and praying he will come out of this. I just want him to be healthy and happy. We all miss him at home. The house doesn't feel right- there is a void that cannot be filled without him. The boys miss him like crazy. Jackson just keeps asking for "Bink-in" and Sam wants to know when Linc can come home and read books about Abraham Lincoln until he does come home.  This isn't just a disruption for our family, it has momentarily torn us apart. And we just pray that we can be whole again soon.

Peaceful sleep

Lincoln had his breathing tubes taken out this afternoon, and he has been very sleepy. They are adjusting his pain meds to try to keep him pain-free, but also to have some more wakeful periods. The good news is that he looks peaceful in his sleep and breathing. We took the opportunity to be home with the big boys and get some rest. The house does not feel the same to any of us, but it was nice to catch up with the boys and spend some quality time with them. They, on the other hand, loved the "week of Mike", as Uncle Mike made it a special week of Craig's Cruisers, Spoonlickers, Seidman Park, and more. We are forever indebted to him for keeping them occupied and never realizing we were gone.

And I truly cannot even begin to thank my mom for all that she has done. Since Lincoln was three weeks old, we have had at least one doctor's appointment every week, most weeks two. She has gone to every appointment, helping me ask questions, keep Jackson occupied, document Lincoln's deteriorating health, and supporting me unconditionally.  We have gotten lost in parking lots, cried in offices, and swore in "quiet rooms." Without her, I could not have survived the last four months and especially this week. She has been Lincoln's advocate and my rock. And she has watched him suffer more than any grandmother should ever have to. She deserves to hold him in her arms as much as we do. We love you so much Mom. Thank you is not even close to enough. There are no words to express how truly amazing you are, Mom.

Thanks to everyone who has offered to bring us food, visit us at the hospital, do our laundry, and drop off meals. We feel so blessed to have so much love surrounding us. Xoxo

One of a kind

I knew Dr. Haw had not done a valve replacement in a baby since 2002, but did not realize that Lincokn is Devos' first and only valve replacement surgery in an infant. So, we are all in uncharted territory, trying to ensure that our baby boy gets the best treatment, care, and home education he/we need. Cardiology and Hematology will both be educating us on how to care for him at home, and we will be having frequent doctor appointments to manage his levels/heart. We are trying to figure out if we can get a co-ag machine  at home to test his levels weekly instead of having to have his blood drawn weekly, but they are not sure if it will work on an infant (since he is their first case).  They are all looking into the best options for his care at home.

Right now, he is starting to wake up, but the process could take up to eight hours. It is hard to watch because he looks like he is in so much pain. He had his chest tubes taken out this morning, but his breathing tube will stay in as long as he stays sleepy. Everything looks stable for now, but until he is breathing on his own and really comes to, we don't really know how he is truly doing. Thanks again for all of your prayers.

Friday rounds

I feel like we are back to Tuesday- all of the equipment is back in the room and Lincoln looks almost exactly like he did on Monday. The doctors and medical team were pleased with how Lincoln is doing so far. They eliminated the fluid around his lungs and heart according to the x-ray this morning. His heart looked good on the Echo ultrasound this morning as well. He is back on strict fluid restriction, so they are monitoring all fluids that go in and out of his body. His is in danger of getting heart block (a complication to valve replacement) so they are watching for that as well. They are taking out his breathing tube and two chest tubes this morning, and hopefully by this afternoon, he won't be as heavily sedated. His temperature has been low since the OR, so they have him on a warmer (it is called a bear hugger and looks really cozy!).  Once he is less sedated, we can really see how he does more in his own.  He is more puffy this time than Tuesday, but that is normal with two major bypass surgeries in one week. His breathing is much more regulated than the past few days, which is nice to see. He looks peaceful so far, which gives me a little more peace of mind (not much, but I will take what I can get right now!). Xoxo

Thank you

Today Murph and I were talking about the fact that without my FHC family donating days, I would be working this week. I am barely functioning as it is, and I cannot imagine trying to work. I also cannot imagine being away from Lincoln any more than I already have to. So thank you for donating days so I can be at the hospital watching over my baby boy.

Thank you to all of you who are helping us in one way or another. We appreciate the meals, prayers, notes, texts, and thoughts so many of you have contributed towards our family. Thank you so much for organizing all of the meals, Lisa Miller! That has been a huge help.

And we are eternally grateful that God answered out prayers today. This morning when we arrived, Lincoln was at his worst. The nurse let me hold him, and I felt like it could be the last time. Murph and I prayed over him together, begging for help. Within a half an hour, the decision had been made to prep for surgery. We didn't get the answer we wanted, but what was needed. And we are thankful for that. A good friend texted me a quote last night, "He heals the brokenhearted And binds up their wounds." Psalms 147:3. We are ready to start the healing process and learn how to take this new path that Lincoln is now on.

Surgery is done

Lincoln's surgery is done, and he is being brought back into his room. It was not as successful as we had hoped, but first-most, he is alive and his organs are functioning. He had to have his valve replaced, which was what we had hoped would not happen. Dr. Haw was really dissapointed that he had to replace it, but after trying to repair it three times and it leaking, he knew it was a necessity. We are so thankful for his wisdom and aggressive tactics because many surgeons wait until organs are failing and then children die in surgery. We are thankful Lincoln is alive, and so far, accepting his new hardware. This means a lot for Lincoln and us as parents, which is very sad and overwhelming. It means another surgery in his future. It means heart medication for life. It means competitive sports are out. It means weekly doctor appointments, co-ag clinics, echo ultrasounds,  and high blood thinners. So we are sad for our baby boy. But we are eternally thankful to have him here with us and hopefully soon, back in our arms. We will be at the hospital now a much longer time, at least ten days  they think.  Please pray he does well with his new valve, he does not have any complications, and that he does not contract any infections. We are not allowing people to visit him any longer because his risk of infection is so great. Xoxo thanks for all of your prayers. We need them.

OR

Lincoln had a rough night again last night, and with his echo ultrasound this morning, they discovered that some of his stitches tore in his leaflet/ valve. That is why his breathing is so distressed and he is so uncomfortable. Dr. Haw and his team are preparing for re-repair surgery right now and they have already put him under Anesthesia. The surgery should be shorter but if they can't repair it, they will have to replace the valve (which we do NOT want). Murph and I are devastated and terrified because Lincoln is so weak right now. Please pray for our baby. We are worse off than Monday in my eyes and the doctors are very concerned. Xoxo

Wednesday night

I don't think there is anything worse than watching my baby boy in pain (except for my poor mom who has to watch me in pain and her grandbaby all day long). Today we found out that Lincoln has fluid building up on the right side of his lungs. They upped his Lasik meds to hopefully decrease the fluid, but will have to put in a chest tube if it doesn't take care of it. He is also having complications in his stomach, and they are thinking it is a side effect from the bypass surgery. He also seems to be affected by his pain meds, and we are hoping that is what is causing his agitation and restlessness. The night nurse and doctor took him off of it and gave him a sedative to help him sleep. The great news is none of his major organs have been compromised and all of his issues are fixable. He also moved into a crib instead of his huge surgical bed, and he had a few more tubes removed today too.
The nurse was trying to cheer me up and calm Lincoln down, so she let me hold him for an hour. It was really difficult with all of his wires, tubing, and injuries, but still amazing to look down at his sweet body in my arms. He truly is a rock star, but it just does not seem fair for him to have to endure something so painful and massive.

Wednesday afternoon

Lincoln's liver ultrasound results came back normal, and his co-ag levels are better. His blood pressure is regulated now with his meds, and his heart/lungs sound good.  He also tested negative for rotavirus and C-dif ( I have no idea how to spell that!). He did finally get to eat again (1 oz) and had a diaper without blood in his stool. We can't figure out what is creating such stress and pain in his abdominen, but it is affecting his breathing and rest. Hematology is coming down this afternoon to talk to us about his lack of blood clotting and possible scenarios with his situation. They have been talking to Ann Arbor's pediatric heart center to see if they have had any cases like this. Dr. Haw said cases like this are highly unusual (of course).  Please pray for my baby boy to get through this and feel better soon.

Wednesday morning

Lincoln has had some setbacks. Last night, he developed a fever, and was having abdominal pain. He had blood in his stool, and a lot of fluids coming out of him. Today, they are giving him an ultrasound to check out his abdominen and liver because they have seen a decline in how they are functioning. Sometimes in surgery, they can be affected by the lack of oxygen. Also, his blood is not clotting the way it should be, so Hematology is coming up today as well. It is obvious that he is in a lot of pain, and we need to figure out why. The good news is Dr. Haw is very pleased with how his heart is functioning, and the small leak is being treated well with meds.  He also seems to be resting better and longer though, which is so much better for him (and us!).

The care here has been great. He has a nurse in his room 24-7, and there is a doctor who circulates every hour or so. Every morning, a round of doctors, nurses, and Dr. Haw come to check on him and discuss his case. The room has glass doors, which is right across from the nurse station, so he can be watched by others as well.  He sleeps in a normal-sized hospital bed, which makes his small frame look even smaller. I have to say that it has been difficult not knowing what to do for my baby. As a mom, I always felt I knew best, but here, I am pretty helpless. I did have a great Mommy moment yesterday though and suggested they swaddle him loosely to make him feel more secure, and it has made a tremendous difference. It has been challenging to trust others to make the best decisions for my baby. Thankfully, I know he is in God's Hands, and I ultimately trust in Him.

Lincoln needs a lot of prayers right now because his situation can go from bad to worse, or bad to good. Please pray for his sweet body to heal fast and well. I will never again take for granted his sweet smile and being able to hold him in my arms. They feel so empty, and so does our home. We all cannot wait for him to be healthy and home.

Tuesday update

What a rough day. Lincoln is very restless, agitated, and his blood pressure is still high. They are going to try to change his pain medications to see if it is the cause of his issues. Most of the day has been spent trying to keep him calm and sleeping. He did have the chest tube removed today with success, ate three bottles (one oz at a time), and his room has less medical equipment surrounding his bed. Please pray for our baby boy. We need his blood pressure to regulate, and we would love to see him rest more comfortably. It is so hard to watch him scream in agony.

 On a lighter note, I did get the nurse to sing Twinkle Twinkle to Lincoln (his favorite), and the big boys think they are the luckiest kids on earth because Uncle Mike picks them up every day at school. The staff has been amazing so far, and we are hoping for a better day tomorrow. Thank you everyone for the prayers, messages, meals, calls, well-wishes, hospital visits, and thoughts. They mean so much to us. Our family is very loved.

Tuesday goals

We made it just in time today for rounds and got to see Dr. Haw and his team. They are going to start Lincoln back on breastmilk today, but it will be very limited due to his fluid levels. They are monitoring every type of fluid in his body to protect him and his heart. He has already had an Echo ultrasound and EKG this morning, which both looked good. They also want to take his chest tube out today. His blood pressure is being monitored with medication, and he is still on a lot of pain meds that make him sleepy. Small blessings: He won't let go of my finger and calms down when he hears my voice - just what this Mommy needed!

We have been warned it will be a rough day because of his hunger and discomfort. We have just been praising God and His will for our baby boy's successful surgery. Now we are just hoping and praying for a successful recovery. Xoxo

Super hero Dr. Haw & rockstar Lincoln

Today, when I saw Dr. Haw waiting to give us the results, I have never felt so scared in my life. As we were walking to the consultation room, Dr. Haw whispered to me, "He is going to be fine." Those words and that sentiment will never be forgotten. Dr. Haw is a super hero in our house. 

He not only saved our baby boy, but he truly did it with grace and honesty. He admitted that what they saw was not at all what he expected, so he took time to assess the situation rather than getting started right away. This life lesson will stick with me forever because too often we dive right into something before true evaluation and cognition. He also demonstrated the importance of wisdom and experience. His prior experiences taught him how to fix Lincoln's heart in a way many would have "over-fixed." God's grace was with us all today, and for that I am so thankful. 

Tonight, Lincoln will hopefully rest soundly, and tomorrow we get to see him without sedation. We are hoping some of the wires and tubes will be removed. The house feels empty without him, our family incomplete. We pray and hope for a speedy recovery, but also for Lincoln to not be in so much pain. His rib cage has been cut into, he had a blood transfusion, and open-heart surgery today at just under four months old. His throat is sore from the breathing tube, and he has a five-inch scar on his chest. Poor baby boy has a lot to overcome still, so please continue praying for rockstar Lincoln. Xoxo 

PICU

We are in Lincoln's room, watching the nurses, doctors, surgeons, and PA's adjust his many wires and       Medications to keep him sedated comfortably. He is breathing on his own with a ventilator assisting, but should have that removed tomorrow sometime. We can touch him, but cannot hold him until a few of the eleven wires attached to him come out. It has been an exhausting day, but we are hopeful and thankful for a brighter tomorrow. It is incredibly hard to see him so little in the giant hospital bed, and with so many wires, tubes, and sores. He is so tiny! Please keep praying for a speedy recovery, for his blood pressure to lower, the fluid to stay out of his heart, and for him to continue being the rock star he is! God Bless!

Surgery is done!

Praise God for Dr. Haw and his medical team. Lincoln's surgery was successful and he now has only a minor leak. We will have to continue monitoring his heart with Dr. Lecina throughout his life. However, Dr. Haw said good is better than perfect in cardiology, and his heart looks good. Dr. Haw said he has only seen five cases like Lincoln's heart in his career and only one in the U.S. He also said that had a younger surgeon operated, it would not have gone well. Now we wait to see him until he gets into PICU and see how he does under ventilation the next 24 hours. His biggest hurdles now are coming out of anesthesia and keeping his fluid levels normal around his heart. Please keep praying!!! Thanks again for everything. ❤

Today is the day...

Sweet man was just taken into his prep room. We keep reminding ourselves that he is not in the doctors' hands, but God's hands. We should know how the surgery goes around noon. Thanks to everyone for your continued support and prayers. We truly appreciate it. Our focus right now is how much better life will be for Lincoln with a functioning heart, but it is still the hardest day of our lives.

A piece of Lincoln's heart...

Sam's teacher had a great idea to give the boys something tangible to think about Lincoln and me while we are away this next week. So I sewed up two little hearts to help explain why Lincoln is having his surgery, and that when they miss their baby brother, they can snuggle with his heart that is being fixed. I think that is the toughest conversation I have had as a mom, especially when Sam cried. They now carry his heart with them everywhere.

Pre-Opp Appt.

Today reality hit. We went on a tour of the PICU heart-surgery section where Lincoln will be for recovery, and then Lincoln had to undergo a variety of tests where his surgery will take place. I found out that we cannot spend the night with him Monday night, which is heart-breaking, and that the first few days are going to be incredibly difficult. We did get to meet his team, and we really liked them. Visiting hours are 11-9, but only two people are allowed in at the same time. Visiting depends on how Lincoln is doing. Please keep praying for our baby boy. We know he needs this surgery, but it is terrifying to know what he has to go through in the next few weeks.

P.S. For those of you who love Lincoln's natural Mohawk, everyone loved it at the hospital. He is going to get plenty of love there :)

Surgeon meeting

We met with Dr. Haw today and Lincoln's OR nurse. We received another drawing of Lincoln's heart defects, and Dr. Haw agrees it is time. We'd been led to believe that Lincoln would need another surgery shortly after, but according to Dr. Haw, it is possible that if everything goes well, this could solve all of his issues, and he could lead a normal life. There are, however, a laundry list of possible scenarios and Dr. Haw said he will not know until he is in the actual surgery. He said that Lincoln will be in surgery a minimum of four hours and at least two hours of post-op procedures before we can see him.

Visitors are not recommended for at least the first few days depending on his situation and if they need to do another surgical repair. Thanks for your prayers and positive thoughts. Please pray that Dr. Haw only needs to do a basic surgery to heal Lincoln's heart, and that there are no complications.

Baby boy

Lincoln has been an amazing gift in our lives. We cannot wait for him to be healthy and thriving. Surgery is 12 days away, and we are anxious, yet hopeful for a successful outcome. He has been struggling to gain weight, and the last two weeks, he has been losing weight and having increased labored breathing. So we know surgery is a necessity now. Please pray for him to stay healthy and strong for surgery. He truly is a fighter, and has already endured such a tumultuous journey. We meet with the surgeon tomorrow and will be able to get a lot of questions answered. Thank you to all of you who have helped us through this difficult time, and for your prayers & positive thoughts.