Week 8 was a big one! Not only were we celebrating our THIRD holiday in the NICU (my birthday, Halloween, and now Thanksgiving), MY BABY DIDN’T HAVE A TUBE DOWN HIS THROAT ANYMORE!!!!! He could swallow and cough and CRY now. Soon, we would be bottle feeding! Also this week, he started wearing real clothes! Up to this point, he was in a diaper and was swaddled. I was not aware of this development coming, so I was truly shocked! I found out later that the requirements were 3 and a half pounds, but when Finn hit that marker, he still had a rigid tube down his throat. So, for him, it was 3 and a half pounds, AND the tube was gone! The month ended with him being “graduated” from his high-tech incubator “Giraffe” omni-bed to an open-air crib in his room. This seemed much less scary for all of us, but he seemed so SMALL in there! Especially since he was still on the CPAP for breathing and was so wrapped up all the time. Soon after he moved to his open crib, we learned that the settings on his breathing machine (called a SiPap) were no longer initiating breathes for him - he was doing that ALL on his own! SO CLOSE to being off the machine and on to a nasal cannula! He also got his 5th blood transfusion at the end of the month.
The beginning of December brought a whirlwind of excitement. It seemed like things were doing a two-step (one step forward, two steps back) for such a long time, then everything was just stagnant with nothing happening, then started moving forward QUICKLY! We were really looking good for the “home by Christmas” dream we had. Finn was doing very well, hitting milestones, and getting bigger and cuter every day! One of my favorite NICU moments came early in December when I had stayed late and got to help the nurses and RT give my little man a “spa bath.” Just under 4 pounds, he was totally bare for the experience except for the NG feeding tube, and the RT was holding a hose to blow air by his nose to keep his O2 levels up, and she used another of her tools to make bubbles in the pan they were using to bathe him. I got to help, and another nurse took pictures, and it was truly a memory I will cherish forever!
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| “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes?” Matthew 6:25 |
I missed a few days early in the month because I was back at home for my surgery – a tubal ligation. We were definitely too old and too worn out emotionally to do this again! I made sure I held Finn extra the 2 days before I had to go home for several days. The day after my surgery, I got the call that Finn was no longer on CPAP – what a GREAT way to make my recovery go faster! He was now just on the nasal cannula, and would soon be able to attempt bottle feeding! We made a quick trip down to see him since this was HUGE and we could finally see his whole face. Good news can sure speed up recovery!

He turned 2 months old on December 5 and weighed in at 4 pounds six ounces, and had started taking some of his feeds by bottle. The other thing that made getting off CPAP such a huge milestone for us was that now our other kids and family members could HOLD THE BABY! They had been asking for so very long! Up to this point, Britt and I were the only ones to have held him. Early in December, that was quickly remedied! Big Brother Jake was first, followed by big sisters Emma and Lara as well as extended family. Once Finn got his tachypnea (fast breathing) under control, he took to the bottle like a champ! The first few days he would tire easily, but by the 4th or 5th day, he was really doing GREAT, and was up to about 82% bottle feeds! The staff was very impressed by this as a baby with his much oxygen support typically has some aversions to nipple feeding. On his month-day, we also started his first round of immunizations. I didn’t know they would keep those on a “traditional” schedule, but it made me feel better knowing he was protected. But, as the NICU ride goes, the bottom soon dropped out on us again. The next week, he was struggling – couldn’t keep his O2 levels up, super sleepy (maybe from working so hard to bottle feed), and generally not the hard working baby we had all come to know. They told me they were going to withhold the bottle for an ENTIRE WEEK to get him back up to par. There went my Christmas wish.
The morning after I got this crushing news, I was greeted at Finn’s bedside by 4 staff members; all declaring my son had just had the poop of the century in the NICU. He got it all over everything including the walls, the bed, and the VapoTherm machine! And the best part? After this display, he felt SO MUCH better – back to the baby from a few days ago who was eager to please! We got to try a bottle again that morning – and never looked back! My Christmas dreams had been revived!
The thought of actually bringing my tiny baby home started to become a reality at this point. But, a scary reality. While I desperately wanted Finn home, it’s scary to leave the only one he’s ever known. It’s like his birth, all over again. Leaving a home that is safe, comfortable, reliable, and KNOWN to go to another place, that while it is safe, comfortable and reliable, it is a GREAT unknown. A whole new set of circumstances and lessons to be learned. A new family dynamic. A new life that God has entrusted US with – we are so unworthy of all his blessings! About this time, we seemed to hit another Finn “plateau” – which he was now famous for. His numbers were trending downward again, so it was time for his 6th (and FINAL, thankfully) blood transfusion. During the blood transfusion, they hold his feeds, so not only did he get an IV for the blood, but also for IV nutrition as well. While he looked kind of cute with a hep lock in each hand poking out over his blanket, I knew it wasn’t comfortable for him. Typically after a transfusion, Finn perks right up and takes off in the right direction. But this one had left him pretty sluggish. He was having trouble taking all of his feeds by bottle, he was lethargic, and was relying heavily on his oxygen support. All these things were not getting us home any time soon. He was no worse, but definitely not better either. And we weren’t moving forward at this point. It really looked like Christmas would be a family of 5 affair as Number 6 stayed in the NICU. Time to get back on our knees and get our prayer partners back in full gear. We needed grace in this situation.
At 10 weeks in the NICU, we had been there long enough that some of the other parents of preemies feel like friends, and the staff was like family. We couldn’t walk down the hall without a handful of “Hellos” and “How’s Finn?” greetings passing my way. Although it was a comforting feeling, it was still a bit surreal. WHY were we there in the first place – let alone long enough to feel that way about the people we were encountering on a daily basis? But all of the hard work, diligence and prayers were paying off. Finn was on another upswing! He hit 5 pounds 10 days before Christmas. We had a plan to get him over the plateau – which included discontinuing the diuretics (which he was not responding to properly), an echo cardiogram (which came back clear), and hold bottle feedings for 48 hours to insure he wasn’t aspirating when he fed – which also gave him time to rest. Oh – and the doctor ordered for his parents to be patient. Easier said than done! We were told due to these setbacks, Finn would not be home for Christmas. But we were thankful for what we had. The doctor had told us the day before that 9 out of 10 babies with his exact circumstances (26 week gestation birth, under 2 pound birth weight, 7 weeks on a ventilator, etc.) would not be faring as well as he had.
But, 2 days was all he needed! We had once again seen God show off through our son. Back to bottle feeding, back to being his perky self. Still weaning his oxygen support ever so very slowly. Just 4 days after that last, fateful blood transfusion, Finn moved to the “A quad!” This is where the less critical babies in the unit stay. This was another huge milestone. You know your baby is going home soon when you move over there where they keep the “growers and feeders.” They took his feeding tube out on the 20th, and that was his last invasive treatment. That’s where we were at this point, just growing and mastering bottle feeding! He was now just on monitors and oxygen. We celebrated Christmas at home on Christmas morning, and then had a lunch of lunchables and capri sun in the van as we headed to see our baby! Best. Christmas. EVER! First picture of all 4 of my kids in the same place at the same time. 5 pounds 10 ounces of Awesome. Growing and feeding just like he should be. Just waiting to come home. They were working through his check list to come home – including his hearing test, eye tests, car seat challenge, and the final obstacle of an MRI. And we were working on ours – taking our last NICU class and getting CPR class taken care of, too.
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| …the angel said to her, “Do not be afraid, Mary; you have found favor with God. You will conceive and give birth to a son, and you are to call him Jesus. He will be great and will be called the Son of the Most High. The Lord God will give him the throne of his father David, and he will reign over Jacob’s descendants forever; his kingdom will never end.” Luke 1:30-33 |
On Tuesday, December 27, 2011, my husband and I got to “room in” with our son in the NICU for our first overnight with him, and we drive him home to our house on December 28, 2011 – 9 days before his original due date of January 6, 2012.
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| In peace I will lie down and sleep, for you alone, LORD, make me dwell in safety. Psalm 4:8 |
The first few days (and weeks!) at home were a true test of our parenting skills, patience, and love. Finn came home on a heart/apnea monitor as well as supplemental oxygen, so we had lots of “stuff” to bring with us. We had some equipment issues the first few days that took some working out, we had some insurance issues that were making it impossible to get the Synagis (RSV preventative) shots scheduled, and my husband had to go back to work, but my older three kids still had a week off school for the holidays! WHEW! And, we were trying to keep Finn on the every 3 hour schedule he had been on in the NICU. It was a challenge keeping everyone fed, entertained, clean and dry - and to keep reminding them not to step on, trip over, kink or otherwise disturb all the cords and wires crisscrossing our house! It was a crazy ride, but we made it! On his due date, had been home for 10 days. We are all still adjusting, but we couldn’t help but celebrate this milestone. We are so happy to just be a family, all under one roof and looking forward to a much calmer 2012.
By 4 months old, Finn weighed 8 pounds, 1 ounce and was 20 inches long. We were so thankful for what God had done in the life of our son so far, and for the future we could finally begin to imagine. He was still on oxygen and still on the monitor 24 hours a day – both of which were becoming tiresome at this point. We had started to wean the amount of oxygen and we were getting close to being done with it, but we still had a few weeks to go. He was still growing strong and doing all the things he should be done.
Shortly after his 5th month day in March, Finn was struggling through a slight cold, and with his congestion and the nasal cannula in his nostrils, he was having a hard time breathing. We called out pediatrician, and got the go ahead to try a room air test! We were so thrilled! It was so great to finally be able to see Finn’s whole face without tender grips and a tube up his nose! He did great, and while we had him on oxygen at night for a few more days, it felt so good to be done with one set of cords and wires! We were still on the heart /apnea monitor at this point, but soon moved to only having it on at night. Our prayers were being answered!
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| Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Matthew 6:26 |
At his 6 month pediatrician’s visit, we were finally cleared to stop using the monitor. This was truly an emotional moment. Our baby was FREE! Thank you Jesus, for all of your continued blessings over our son! We could be a normal family! He was growing bigger, was given a clean bill of health, and we were finally getting out of RSV/flu season! We did have one more hurdle to jump, as he needed to have surgery to repair the left inguinal hernia he had. We got that scheduled for a few weeks later – at a different hospital an hour away from home again. All went very well with his surgery and his recovery made him a whole new boy! The child development specialist that comes to see him every 2 weeks was really amazed at how much better he felt and acted after that surgery! Now, that he was doing so well, we could start to get him out of the house a little bit. His first encounter with the public was on Easter Sunday when we took him to church for the very first time.
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| Let the heavens rejoice, let the earth be glad; let them say among the nations, “The LORD reigns!” 1 Chronicles 16:13 |
As I write this (May 2012), Finn is almost 8 months old. The last couple of months have been so great. He is a wonderful baby to be around – when he’s happy! We also suffered through a terrible case of colic, and while he is past that, he is still my fussiest baby! But, his smiles, coos, laughs and just the miracle of his life make all the struggles so very worth it! We are so lucky God chose us to be his family, and we can’t wait to hear how he changes the world in the future!
We hope that sharing our story with you will help you on your journey. We also want to thank you for letting us tell our story and letting us reach out to you. We have been able to celebrate victories and grieve for sorrows of several families since we began our journey. It is truly a blessing to be able to share this experience with others. “Rejoice with those who rejoice; mourn with those who mourn.” Romans 12:15
Today, Finn is 18 months old (March 2013), weighing in at 19 pounds. He is still a peanut! he has some gross motor and speech delays, as well as minor complications from those pesky preemie lungs, but he is a JOY and has changed our lives SO MUCH - for good! I can't imagine my life without my preemie journey and how much is has grown and stretched me!