Our Warrior's Battle Against CHD

Our Warrior's Battle Against CHD

Friday, November 30, 2012

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

Thursday, November 29, 2012

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.


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, November 28, 2012

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, November 27, 2012

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

Monday, November 26, 2012

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 


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.

Saturday, November 24, 2012

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.

Wednesday, November 21, 2012

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 :)

Thursday, November 15, 2012

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.

Wednesday, November 14, 2012

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.