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!!!