Late last night I overheard the charge nurse in the hallway talking about our little Finn. She didn’t know I was in his room and when turned and saw me she clutched her heart, started tearing up and said “he is our miracle baby!” She was on duty the night Finn was admitted and when we were told he likely was suffering from Pompe Disease. She had since been off and came back tonight to see a different baby. This was why she does this job she told me. She was so happy for us, for Finn. He truly is a miracle baby. My heart is so full of love for this child.
We did our hearing test and trained me how to administer his medications. Finn nursed and nursed and I even topped him off with bottles after each feeding. I did everything I could to get this baby home where he belongs. Now we just have to wait to check his weight. He had a huge dirty diaper right before we took his weight, 60 grams. Seriously? Couldn’t you hold that in until after the weight check buddy? I hold my breath as the nurse picks him up to put him on the scale… 80 grams. My baby gained over 2.5 ounces in a day. This has to mean we can go home, right?
Usually I wake up, nurse Finn and head home to help get Asher ready for school before coming back to the hospital. Today I stayed here. I wanted to make sure I was here for rounds. Just in case. Dr. Ketko came by and started talking like I knew what she had decided. She never really said he could go home but her tone and what she was saying implied it. When she asked “do you have any questions” I had only one. “Does this mean we REALLY get to go home?” The nurses laughed. “Yes, you really get to go home. Congratulations!” We graduated from the NICU. My life was going to be whole again. I am still in shock. You have no idea how much stuff you accumulate in just 10 days of living in the NICU. After filling up a cart with bags, food, clothes, pillows, blankets and more I brought all my stuff to the car and the carseat back up to the room. Time to go home.
It feels surreal pulling out of the parking lot today. I have been coming and going so much lately but tonight I won’t be returning after Asher goes to bed. Tonight I will stay home and sleep in my own bed. The last night I slept in my bed was Thursday January 12th. I still can’t believe it. Last Tuesday we were facing months in the hospital to undergo enzyme replacement therapy. Now we are heading home.
Finn’s heart isn’t fixed. We have medication and follow up appointments to attend. There are still results we are waiting on and next steps but for this moment I am going to concentrate on bringing my baby home and having my family in one place for more than an hour.
Home! He is here. Finn spent the first 6 hours of his life here and hasn’t been back until today. This time he is staying! I don’t know the words to describe this feeling. Relief, excitement, anxiety, love and fulfillment to name a few. I am going to lay in bed and kangaroo cuddle my little man until by bigger little man comes home from school. This is what maternity leave is supposed to feel like.
When Asher came home he was so excited to see his brother. “Baby Finn is home!” He came and gave his baby brother a huge hug and kiss. He pushed him in the swing and was curious about his cries and noises. The three boys cuddled in our bed before it was time to read bedtime stories. This feels right.
Before saying goodnight Asher brought me a book to read to Finn. One of his current favorites. He also offered Finn his blankie. I can’t remember the last time Asher went to bed without it. When Jeff asked him if he was sure he told daddy Finn needed his blankie. Seriously. Melt my heart. This is too much. I can’t wait to see this day after day. My boys, my heart.
Tonight is our first full night here in the house as a family of four. I can’t wait to wake up all night to baby cries without the beeps of machines or the cares of nurses. I am looking forward to the chaos of getting a toddler ready for school while a baby whines to nurse. Complaining about when I can fit in a shower or get a nap sounds like such a luxury after the past 10 days. I will take all the “normal” problems anyone can throw at me because tonight my heart is whole again.