So I've been trying to write this blog for two weeks. In some ways, it's more difficult than the last one... I don't know why. I guess it's because we're moving forward. I'm still not entirely sure how to do that. We're working on that every single day. Figuring it out.... baby steps. Some days are better than others, and some days are just hard. One day it will be easier to see a set of twins in public. One day, I'll be able to talk about her without tears in my eyes. One day, it won't hurt to see little girls with big bows in their hair. One day.. but that's a process, and steps we've not fully reached yet. And that's ok. God is faithful to provide peace, reassurance, and a good cry when I need it most. He understands, remember?
Harper's celebration was perfect. We didn't want a traditional funeral. It didn't feel right for all that she's done in such a short little life. We wanted to celebrate God's faithfulness and love to us. We wanted to have a church service, worshipping God for all he's done for us.... and we did. And true to form with Harper, she touched more lives with that service too...Another fantastic way that God continues to answer our prayer that these babies would be used for his glory. He is good, and his faithfulness continues to amaze me. Yes, there were moments of sadness in that service, but as I sat and listened to the ways that Harper changed us all for the better, I was happy... and a very proud mama. In fact, I found myself smiling as I sat through her service.
So we've now been in the NICU for 25 days. Jax started out strong, but had his share of issues. When he was born, he just needed a little bit of oxygen, and it looked like he just needed to grow and learn to eat. Then he had a series of respiratory issues that set us back. He's had a pneumothorax, a collapsed lung that put pressure on his heart, a heart murmur, and a scare with a possible intestinal infection. It seemed that for every step we took forward, we took 2 steps backward. It's been a complete roller coaster. There's nothing that can ever prepare you for watching your child be "bagged" to help him breathe, be on a ventilator for weeks, cough up large amounts of blood, face possible surgery, or be stuck a 100 times to test for more issues. Nothing can prepare you for the feeling that you just want to hold him when you can't, soothe him like a "normal" baby, or for that longing to be home...with him... like most other moms do with their babies.
It's difficult at best, but God is faithful.
Jax is doing so much better now. He's completely off of all respiratory support, breathing room air like a big boy. The intestinal infection they thought he had isn't a possibility anymore, and his heart murmur is healed completely. He's now getting real feeds that they increase daily, and doing really well. It's hard not to get your hopes up in these situations, but he looks really good. He needs to learn to eat now, which is a process, but he's so so much better than before. My pastor said it best when he pointed out that with every single incident with him, we asked for prayer....and with every single prayer came God's solution for it. every.single.time.
There's a song by the David Crowder Band called "How he loves us". Ever since that day when we were given Harper's diagnosis, I've had it in my heart. I don't know that before then I ever really sang it, but after that day I sang it constantly to them. I hummed it in the operating room while I was waiting on Jerry to be let in with me, and while I was waiting to go see my babies. I still sing it to Jax. I've always sung the chorus only, repeating "Oh.. how he loves us! Oh... how he loves us! How he loves us so!" Over and over again. I had heard the rest of the song before but had never paid attention to the lyrics until Jerry and I were in the hospital on the night the babies were born. This is the first verse:
He is jealous for me.
Loves like a hurricane, I am a tree,
Bending beneath the weight of His wind and mercy.
When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realize just how beautiful you are,
And how great your affections are for me.
It seemed so fitting that we fully recognized these specific lyrics on that night. We were very much in the midst of a hurricane... a violent storm of sadness and sorrow...but somehow we felt so very loved. We were and still are so completely aware of God's love and provision for us that we bend with the winds of this storm, but we are not broken people. Jerry and I are living the first half of this verse. I understand more and more each day the depth of the love our father has for us. That he would go through this willingly to give us abundant life. How incredible.
So I look at my son who has had practically every preemie ailment imaginable, and still see this healthy, unaffected, laid back baby. With the exception of one day when he was coming off of a morphine drip, he has been so at peace. I've watched as they put in PIC lines and arterial lines without him even flinching. The doctors have all remarked about how he just doesn't act sick. He's never really acted that way. Through a pneumothorax and collapsed lung, 2 chest tubes, 2 ventilators, an infection scare and a heart murmur, he has remained this healthy looking baby who smiles and continues to grow. They have all said "his body doesn't seem to know he's sick. It doesn't make sense." His vitals stay stable. His face keeps smiling. He is calm.
Jerry said it best the other night. He said he had been thinking about our situation on his long drive home, and how God continues to bless Jax with good health and answered prayers. He talked about how the doctors keep saying he's just unaffected by what's happening to him. He said it was like this song...that Jax is just unaware of his afflictions because of God's glory and love for him. It's like he's so peaceful because he knows that God's in control and taking care of him. Jax is living the second half of that verse.
God loves us, and he is faithful to bring peace and reassurance in every situation... to Jerry and I as we muddle through how to cope with the loss of our daughter, and how to retain our sanity in the NICU with a sick baby... and even enough to bring peace and comfort to the body of a tiny little boy, only days old, through multiple ailments and procedures. He is faithful even in the tallest and the smallest of us, isn't he?
So as we continue to move forward, I thank God for his faithfulness in all things, for his peace that passes understanding, for strength to go on each day, and for his overwhelming love that surrounds us.
He is faithful.
I leave you with a picture of Jax at 1 week, and Jax at 3 weeks. We're so in love with this growing boy, and amazed by his progress in such a short time!
"For I am confident of this very thing, that God who began a good work in you will perfect it until the day of Christ Jesus." Philippians 1:6
