2013!

A year that I don't ever want to forget. But a year that I am happy to see go. I've been tested and tried in more ways than I ever thought possible. But I'm here and I'm doing the best that I can. I know I wouldn't have been given this life unless a higher power saw fit for me. He wouldn't give me anything I couldn't handle. So here I am, handling it. 

I've become closer and stronger with many people from my past throughout this situation. I've lost friends but gained many new ones. I've realized how truly lucky I am to have the family I have. Most of all, I am lucky to have this new relationship with God that I never before understood. He has remained by our side and given us the most precious gift. 

Life. 

So goodbye to 2013 & cheers to 2014! 

Our routine.

We just finished our nightly medicine routine. Which right now includes this. 

We are quickly learning that the post-transplant medicine regimen is a balancing act. The balancing act is difficult, as each patient reacts differently to different medicines. What works for one patient, does not necessarily work the same way for another patient. Eli is on 14 medications. 1 patch, 1 oral wash and 12 meds that go into his NG tube. I posted a few days ago my schedule. I don't think many realize how exhausting it actually is. Let me reiterate. Somewhere in all this mix I still find time to love my other child, eat and shower and play on social media. When going back to work in January, this is gonna be horrific on Danny and myself. 

I will just start at midnight. 

12:00am feed 3oz & pain med

3:00am feed 3oz & pain med 

6:00am feed 3oz & pain med 

8:00am all meds 

9:00am feed 3oz & pain med 

12:00pm feed 3oz & pain med 

2:00pm 2 meds 

3:00pm feed 3oz & pain med 

6:00pm feed 3oz & pain med 

8:00pm all meds 

9:00pm feed 3oz & pain med 

And it starts over....

Sometimes this road requires us to do things that we hate doing. None of us likes to put our child through pain and fear and anxiety. But I would do it…again and again…if I had to. I do it because I love him. I do it to keep the sacred gift inside his chest beating as well as it has been since he received it. I do what I have to…just like so many mother’s of children with CHDs. And in doing so, I find a strength within myself. No mom should have to do this…but sometimes, we have to.

Xoxo 

Struggles.

The past few days have definitely been trying! I haven't had the energy to sit down and write full posts, but it's been a rollercoaster, a few steps forward-a few steps back. 

I feel so blessed to have been given this child to nurture, given the opportunity to watch him grow and become this little person of his own. Each day is a day for giving thanks; I'm reminded of that constantly, even as we settle into life beyond the surgeries. Grateful for his life, grateful for the donor family, grateful for normalcy, grateful for it all. The unsettled fear of the past year feels, well, in the past, and damn, it feels good. I still take day each day as it comes, still cope with the lingering anxiety of being a heart mama, but it's easier to look forward to his future with hope and excitement.

While all of the above sounds so good and normal. Our lives are far from that. I am torn between the hospital and home. I am away from Danny and Lucas a lot. While I know that in just a few short days. This will all feel so irrelevant, but today I am sad. I hate sneaking by Lucas door in the morning to leave and go be with Eli. I hate that I miss waking up with him or putting him to bed. I miss my son to the extent I can't even be happy when I am with Eli. No mother should be torn between her children. Making one feel less loved or wanted was my biggest fear in all of this. I don't feel like Lucas resents me or is acting out but I feel guilty. All the time. While Danny does an amazing job juggling Lucas, 2 jobs, and the house. I feel less like a mother and a wife to them. I just come and go. So quickly and quietly. I've struggled lately with balancing my time between the boys. I've been very irritable coming down this final stretch of Eli's stay in the hospital. I know 5m plays a huge part in the process but I just feel like I can't catch a moment to just breathe and be okay. While everyone is being so supportive and helpful, I am in total awe of the love and generosity you have given us. The cards, gifts and messages have been overwhelming. We couldn't have gotten this far without all of you. 

Many of you are still asking what you can do to help us. Eli is back to wearing normal clothes. So any you are able to donate would help a lot. He needs sizes 6m and up. 

Gift cards to restaurants. 

Kroger gift cards to buy groceries for the hotel. 

Anything to keep Lucas busy in the hotel. Toys, books, balls, movies. 

Thank you all

Xoxo

A good place.

It's been a very emotional year, a very hard year, a very amazing year. And it is so comforting to have it behind us. There's something about these next few weeks that are so huge to us, as though the first year is the hardest struggle with heart kids, and here - we are making it! We made it to December! And he is fantastic! It feels like the toughest, most fragile days are behind us. I know that might not be the case, but I'm hoping it is and that he sails through the next steps and we have so many, many more good days ahead of us. He's on a good path, good weight gain (we broke 12lbs) good heart numbers (we have sats in the 90s all day!), a little behind on milestones but we will get there, may need a helmet to fix his left side cranial hematoma but that's normal for a baby like Eli who has been in a bed for 5 months and 4 of those with a breathing tube, and just the happiest, most smiley little man. We couldn't be luckier. (Knock on wood. Please.)

Now we just wait. We have lots going on over the next few days to prepare for his discharge. A 24 stay with Eli before we leave the hospital is required. It will give Danny and I a chance to prove we can do this, together. Once Eli is discharged, we go to a hotel until his second biopsy on December 26. Yes, after Christmas. Once those results come back, they will look into letting us go home or stay longer depending on the level of rejection his may or may not have. We are so happy all of you have stuck with us over the past 9m since Eli's diagnosis. A true miracle happened right before our very eyes. 

Xoxo