Our Warrior's Battle Against CHD

Our Warrior's Battle Against CHD

Wednesday, April 22, 2015

Lincoln's appointment today

Today was a great day- my baby boy had an awesome Cardiology appointment! This was our first one with our new cardiologist, and he is exactly what we have been wanting all along. He even won Lincoln over within the first two minutes of the appointment! 

 They did a very thorough Echo ultrasound, and Dr. Chris said his mitral valve looks great, his tricuspid valve is still leaking, but minimally, and doing much better with the new valve. He also said we may not have to replace this valve until he is a teen! That would be such a great gift! 

His bandage came off completely today, and Dr. Chris said his incision looks great and all of his wounds are healing nicely. It takes my breath away every time I see his chest. Lincoln was very distraught over it. He said it is yucky and he doesn't like it. It was devastating to hear him say that.  He has been through so much, and I do hope as it heals and doesn't look so raw, he can be proud of it as a symbol of the tough little dude he is. A scar that tells his story and what a miracle he really is. 

This mom is very excited for no more sponge baths, and he can take a real bath tomorrow! I can hardly wait. We still cannot lift him underneath the arms for two more weeks, but he is doing great! Thank you for your prayers and positivity! Xoxo 

Thursday, April 2, 2015

Follow-up with Dr. Haw

Lincoln had his follow-up with Dr. Haw today. He had an X Ray of his chest, an EKG, & Dr. Haw looked at his chest wounds. Everything looked great, which is great news. That means no more LASIK  & Lincoln doesn't have to go back to see Dr. Haw for awhile! 

We also switched cardiologists, and we will now be seeing Dr. Chris Ratasami, who was great with Lincoln throughout our stay at HDVCH. He is a cardiologist as well as an Electro- Physicist, and clearly cares for his Lincoln's well-being.  We will be seeing Dr. Ratasami in two weeks and having another follow up echo ultrasound. That will be Lincoln's sixth echo this year! 

Dr. Haw is concerned with Lincoln's calorie intake and wants us to encourage eating any time and anything at this point. Lincoln has never been a great eater, so that will be a challenge finding what he likes and will eat a lot of! 

Home care has been getting gradually better. Katie & my mom have been a huge help with the one-on-one care for Lincoln and the other boys. I really could not have gotten through this week without their help. Lincoln is still not walking much, and he wants to be carried most of the time. I am sure I will wish this time back when I am trying to slow him down in a few weeks! 

Tuesday, March 31, 2015

Home sweet home

The first few days home have been tough. We are so glad to be out of the hospital and trying to reestablish our home routines. Linc is such a trooper, and he is recovering well. He has a lot of trauma from all of the hospital staff poking & prodding him, so he is pretty insecure right now with people & noises. He has a hard time getting comfortable with his chest pain, and he does not want to walk. So it is a lot of carrying a toddler around like a baby. Sleeping has been rough, but that is pretty typical after the PICU. He is officially in his crib as a big boy bed, which is because of our inability to lift him under the arms. 

It has been such a blessing having Katie here this week because she is a comfort to all of the boys, and a huge help to me. We greatly appreciate all of the meals as well, because cooking right now is pretty much impossible. Thank you to all of you who took the time to make us healthy food from your hearts. We truly are in awe of the love surrounding us. And a lot of you have stocked me up on my pink moscato, which is greatly appreciated after a long day! 

The big boys are so happy to have us home. Both of them have been so tender and loving towards him, and they can hardly wait until he is back to his busy, sassy self. And it is awesome to see them all interacting together again, as the three brothers. 

Sunday, March 29, 2015


Dr. Haw, Meghan, the P.A., and Dr.Schneider came for rounds this morning, and they can't believe what a rockstar Lincoln is. To be discharged 6 days after such a huge, repeated surgery is amazing. Dr. Haw told Lincoln he is a rockstar! 

We have a lot of various professionals coming in to talk to us about home care, restrictions, & his routine needs. We have to protect his sternum's restructuring, so he has a lot of restrictions that we have to enforce even if he wants to do them, including temper tantrums (should be fun!). And because we have a home monitor system & I am crazy :), they trust us to care for his INR at home. YAY! We have two follow up appointments this week, and then six weeks of restrictions until we come back to see how he had progressed & get a follow up echo. 

Praise God in protecting & lifting this sweet boy up through all he has endured, and using His timing to make the best of this awful  journey through CHD. I really did not go into this surgery with hope, and I am so thankful I was wrong.  Xoxo

Saturday, March 28, 2015

Mommy Fail

Lincoln is officially therapeutic on Coumadin, so he is off of the heparin drip! We will get to move to the more private 7th floor of PICU away from the heart surgical center PICU. 

He had his Central Venous Catheter removed and two lines from his feet. But I totally failed him. They always tell you to leave, and I knew I wasn't  strong enough to watch another procedure, another session of pain & panic. They brought child life in to distract him while I left. I didn't want to watch him suffer more. When I came back, it was obvious that it was awful- he was covered in sweat, hair soaking wet, and blood leaking from one of his IVs in his feet. And he looks at me, saying through his plow- "don't leave me." Mommy fail. My heart is broken that I left and he needed me. He says he has forgiven me, and now just wants to sleep on my shoulder & snuggle. 

This whole situation may be filled with grace, but it is also filled with hundreds of decisions that I don't know the right answer to. No one prepares a parent for this journey-one of hardship, suffering, constant decision-making, faith that God will see us through, trust in every person who cares for him, and heart ache for all he has to endure. And I made the wrong choice today. One I will not make again. 

Friday, March 27, 2015

Another day...

Lincoln survived the withdrawals again today, his chest tube removed, a wagon ride around the PICU, and a day with only tylenol for his pain. I think that is pretty amazing on day 4 post surgery #3! He slept on me a lot (at least 4 hours) & gave a lot of snarky looks, but we got through another day in the fishbowl PICU. 

I am not sure when we get to break out of this place. Dr. Haw said Monday. I am hoping Sunday :)  If Linc is therapeutic tomorrow morning on Coumadin, we get to discontinue Heparin. That is a very big if. Then he can get the Central Venous Catheter out of his neck. Baby steps toward home hopefully! We are both more than ready to be in the comforts of home, and see the big boys. We are ready to be together as a family. 

I am nervous for the home care ahead of us, but this time around, he is much more vocal about what hurts and what he wants, so I am hoping that part will be a little easier. His restrictions are for 6 weeks, so he will be able to swim this summer. And I can't wait to see him rock ️this new valve- he should put on weight, want to eat more, and be much more active! 


Friday morning Rounds

Lincoln's first dose of Coumadin resulted in 1.2, so we are hoping with another big dose tonight, he should be therapeutic by his weekend! He & heparin do not get along, so unless they give him a boost of it, he doesn't get in the therapeutic range. 

He gets to have that chest tube removed today- it removed 87 cc of fluid, so he must have been in a lot of pain. They are switching his LASIK to oral, which I am guessing means that he will continue to take it at home. 

He is eating & drinking this morning, and while he is still grumpy, so much easier to deal with than yesterday. They think yesterday might have been a combination of the effusion pain & withdrawals from the Fentanyl & Oxycodone he's been on since surgery. Poor baby boy has been through a lot, so it could even be a reaction from surgery.

They want to try to get him out of his bed today, which would be great for his spirits.  I accidentally flicked milk all over him, and he almost giggled. He definitely cracked a smile at me :) ❤️🙏😍

We are moving in the right direction! Thank you for your prayers!!!

Thursday, March 26, 2015

Me being philosophical

Today I spoke with Dr. Mike's office. He has been stalking our hospital notes, and he couldn't believe that Lincoln was really functioning with half of a valve. An 8mm hole for his blood to flow through instead of 16mm! And then they were asking how the doctors knew. It all started with RSV/pneumonia visit. They wanted to check and ensure it wasn't endocarditis. So they caught sight of his numbers elevated even more than they were a few weeks before his illnesses. And wanted a follow-up appointment. Which led us to surgery. And probably prevented him having a heart-failure surgery in the middle of the night without our A-team scheduled. The people I trust with his life. 

Sometimes miracles happen in crappy circumstances that lead to His grace. Lincoln was functioning with half of a valve, not gaining weight, and still smiling every day. That is the true essence of a warrior. Battling through pain, failure, and adversity to survive. I could not be more proud of him and his CHD journey. This toddler is not only a warrior, but survived 
insurmountable odds. CHD sucks, but With God's Grace & Miraculous Ways, Lincoln's hot mess of a heart is still God's masterpiece. Xoxo

Two steps forward, one step back... 💙

Lincoln got to get his pacer wires out, and a new chest tube inserted. Two steps forward, one step back. We just put his Heparin drip back on & begin Coumadin this evening. He has already released a lot of fluid from the effusion, so we are glad they decided to do the procedure. 

Lincoln is so crabby and uncomfortable -it's been hard to face another day of him being miserable & inconsolable. The only thing he has answered yes to all day is being in my arms. Which, I will say, is an awesome feeling - grumpy boy or not :) 

Morning Rounds 3.26

The X-Ray this morning showed fluid around Lincoln's right lung. That is probably why he is still struggling to take full breaths on his own. They are going to do a procedure today to put a new chest tube in to drain that fluid, to remove his pacers, & they will have to sedate him for that. They also had to stop his heparin to do the procedure, so there's kind of a lot going on this morning. Dr. Haw said he should feel a ton better once the fluid is drained.

 His heart is still looking great, though, and he gets to take a big dose of Coumadin tonight, if everything goes well today. Heparin has been a pain to monitor & maintain a therapeutic level,so we are thankful to get him back on Coumadin. 

Thanks again for your prayers, messages, meals, and gifts. We greatly appreciate it all, and it truly is helping us get through this difficult time. Xoxo 

Wednesday, March 25, 2015

I finally get to hold my baby!

I finally have my sweet baby boy in my arms! Within seconds, he fell asleep. Hopefully it will be good for his spirits since he kept asking me yesterday to pick him up. I know it has helped mine! 

We can't pick him up underneath his arms for 6 weeks, so it is difficult between that and the tubes/wires. But we are snuggling away, carefully & happily! 

Rounds 3.25

Lincoln is very sleepy after a restless night last night. And when he is awake, he is very crabby. We are trying to get him to eat, but he doesn't have much of an appetite. 

The doctors want to watch him on the 8th floor another day. He has a pericardial infusion (fluid buildup) that they are watching, and using LASIK to try and eliminate. I guess it is very normal after OHS. His puffiness has gone down tremendously, and his heart Arrhythmia has fixed itself. His pain management is being watched closely, because after 3 OHS so close together, it is extremely painful. 

He is such a trooper, and is such a rockstar with all he's endured. It has been a grueling week, but each day brings more hope. Thank you for all of the prayers, meals, messages, & gifts. We truly appreciate every gesture of kindness. Xoxo 

Tuesday, March 24, 2015

Moving in the right Direction

Lincoln has been in a lot of pain today, so they upped his pain medication. He is pretty irritable, but was finally able to take a good rest this afternoon. 

They took out two of his chest tubes, one from his hand, and his catheter. They also took him off three of his meds. His heart has been in great rhythm all day, and he's been talking in a drugged state all day. Mostly bossing us around :) so we are really hopeful to keep progressing along. His liquids are still limited, but he is asking for water quite a bit. Mostly wanting milk (which he can't have). I was even able to feed him applesauce. So we are headed in the right direction! Thank you for your prayers. They are working. 

Morning Rounds

Lincoln had a pretty uneventful night! He kept trying to wake up from sedation, so this morning, they took him off of the breathing machines & out of sedation. He  is trying to get the junk out of his lungs, and is pretty agitated by pain & frustration of wires. 

That being said, the doctors and physician's assistant are optimistic from his echo and X~Ray this morning. They are starting his heparin drip, and his chest tubes have stopped draining as much. He is still swollen, but not nearly as puffy as he was as a baby after surgery. 

Trying to hang in here today- hoping and praying his heart rhythms continue to balance out, and he stays relatively calm as he becomes more awake. And if you know Lincoln-  that would be a miracle in itself. Thank you for your prayers, thoughts, meals, gifts, and messages. We greatly appreciate it. Xoxo

Monday, March 23, 2015

Prayers for an uneventful night...

Lincoln's post-op plans have changed- he is having a hard time maintaining a consistent heartbeat and was on the warmer side after surgery. They are keeping him on a cooling bed, and are keeping him sedated through the night to give his heart time to adjust at a slower heart rate. He keeps trying to wake up, so they have had to up his doses quite a bit. The nurses have already picked up on his feisty nature :) The first night is always difficult, so please pray that it is an uneventful night. 

Sidenote- we walked in and Lincoln's hair is spiked up in a Mohawk. It actually took my breath away since that is how he rocked the OR 2 years ago. He is still our little rockstar 💙

Thank you so much for your prayers and support. We felt them today. Xoxo

OHS 3.23

Lincoln is a rockstar. When we had to pass him on to Dr. Huntington, he was babbling & giggling in a drugged state. It was so cute, we were giggling and crying at the same time. He did great through the bypass process, and opening up his chest for the third time.

Dr. Haw is very pleased with how surgery went. He was able to put in a 23, which is 3 sizes away from his prior 16. So far, his heart is functioning well, and we are so relieved.

 Today was a miracle in many ways, because they were so concerned with what they would find when they opened him up, and they were all pleasantly surprised by how smoothly surgery went. They were shocked by the buildup and how much blockage was there. Dr. Haw said he would not be surprised if Lincoln puts on some weight right away and is much more active. 

Now we wait and see. He needs to get back on his heparin IV to protect his heart & avoid a stroke, but we have to be careful of internal bleeding. We also have to watch for pulmonary stress from the obstruction & new valve, but so far his heart & blood pressure look great.  We are so thankful. He struggled during the off-bypass process, but he is doing better now. We just got into his room, and he is sedated, and on breathing & heart aids still. Thank you for your prayers. 

Friday, March 20, 2015

3 under 3...

2 1/2 years old 
4 months old...

 Lincoln, our little warrior. This sweet boy has    endured more pokes, tests, EKGs, Echo Ultrasounds, and surgeries than most people  
endure in their lifetime.

  Here he is with our heart hero, Dr. Haw. Two years apart. And here we are faced with another journey through Open Heart Surgery. We met with Dr. Haw today, and he confirmed that Lincoln does indeed need his mitral valve replaced.  Lincoln will be undergoing OHS Monday, as Dr. Haw's first surgery of the day @ 7:30 a.m. The surgery should take between 5-6 hours. We are checking in late Saturday afternoon (tomorrow) to manage Lincoln's Coumadin/Heparin IV.

Thank you so much for your prayers and positive thoughts.  No one, including Dr. Haw, Dr. Lacina, and Dr. Joseph, expected us to be back in the OR this soon, so this week has been a whirlwind of shock & devestation. Thanks to all of you helping us out with work, the house, the boys, meals, and our sanity. xoxo