This morning, a neonatal baby died on our floor. He was not even old enough to see his due date. I heard the mom screaming, and I can't get it out of my heart and mind. It really puts everything into perspective. I am so incredibly thankful that Lincoln is breathing, functioning, kicking, smiling, cooing, crying, and eating. While our road is difficult, it is possible. He is alive. Life is so fragile, yet completely taken for granted in so many ways. I hope I never lose the perspective that my kids' lives are a precious gift, and to truly enjoy every moment with them, no matter how hard that can be sometimes.
On a positive note, Lincoln took a bottle last night. They finally listened to me about not waking him up, but allowing him to demand food. And it worked! I hope that means the speech therapists will leave us alone. A mom can dream right?! He still has not gained any weight, so please pray he starts gaining soon. He is eating better every day, but we need for him to start showing signs of that.
His INR level jumped with the dosage increase two days ago. I have been nervous about it because it is such a gamble. If they increase it too much, they have to reverse its effects, and we start over. I love the pharmacist here - she speaks her mind and is willing to educate me by answering my questions. Today his INR is at 4.1, which is a little high, but should even out by tomorrow. The goal has been between 3.5 & 4. I keep hoping that means we get to go home faster, but we shall see. Patience.....
I have had a lot of people ask about his valve. There are not as many options for infants and much depends on the attraction the body has to foreign hardware. His valve's surface is much less likely to attract blood clots, and it was easier to oversize, so hopefully Lincoln does not need surgery as soon. But most importantly, it was an emergency surgery where Lincoln almost died. There was not time for a discussion of valves, or time to wait for a different type of valve. My favorite nurse was on that day, and she continues to remind me how that day could have easily been a much more devastating day than it was. So we are thankful this valve works great, and he is a healthy baby. And we will be excited to see how technology changes for the next valve. I have complete trust and faith in our team, and I know they saved my baby's life with God's Hands on our sweet boy.
I finally took a picture of his scar. It has already started to heal and peel, but it will be with him forever. It is a constant reminder of God's work in our lives, and how we can overcome even the most devastating circumstances with love, faith, hope, and gratitude. It is also a reminder of how tragedy can truly show us who loves us and lifts us up. Thank you so much to all of you who have supported us and loved us. We are blessed, humbled, and lifted. Xoxo
Praying for that family last lost their baby this am. Glad to see that things are going well with Lincoln and hopes that he will be home soon. Praying that Linc will start to gain weight too. XOXOXOXOX
ReplyDeleteLisa, you are amazing. Your words of faith are so uplifting! I'm loving the pictures of little Lincoln too; he looks so good!!!
ReplyDeleteYour first paragraph reminds me of our facebook messages from last week. My how our paths can be similar... Thinking of you. You have every right to be grateful for what you have. Blessings on you and Lincoln... What a terrifying experience.
ReplyDeleteLisa, Thank you for the update and we will keep praying for Lincoln and for all involved in his care. God is faithful and is healing him right now. Praying for weight gain and strength! Love to all of you ~ Teri
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