Tag Archive: Preemie


Winter Is Coming

Winter is coming! I have to chuckle as I write this now popular phrase from Game of Thrones, a book I have tried and failed to successfully finish, twice. However, the phrase applies. Winter is coming and for us that means RSV season lockdown at the house. We are days away from the little one and I being sequestered to the house for the next six months. That means no going to the grocery store, no running errands, no trips to Starbucks, no leaving the house for anything except doctors appointments. Last year at this time I had no idea our son was about to be born, prematurely, and that we would be meeting him and bringing him home from NICU in about two months. There was no time or need to think about how I would spend the next six months at home. I was surprised by the new addition to our family and spent those six months snuggled in a shocked glow of happiness to have this little miracle home.

This Winter is Different

This year is totally different, for a variety of reasons. To begin with, I spent last winter in a prolonged and heightened sense of near panic that is almost impossible to describe. Our son came home with a variety of machines and for the first few months home would still have apnea episodes that lasted long enough for him to begin turning blue. There is a state of never being able to truly relax that only parents of medically fragile children know. The fear and expectation that at any minute the alarms will sound and your child will be having a medical emergency. Even as I type this I can feel my chest tightening as I return to that place. This year we are monitor and machine free. Hallelujah!! As long as Miracle Man can stay healthy all winter we will remain free of those machines.

However, that was only the beginning of my fears. We knew from the day we chose to foster-adopt that there are no guarantees, children will come and go in our lives and it is our job to love them and protect them for however long we have them. We knew this, were trained to know it and discussed it often and then the day came they placed my son in my arms and I forgot it all. From the second I saw him I knew, this was something different than I prepared for, he was meant for us and we were meant for him. It instantly felt like I had found a puzzle piece by accident that perfectly fit into the puzzle I had been working on for years and been unable to finish. We reminded ourselves often that nothing was guaranteed and that God would ensure our little one ended up wherever he was meant to, even if it meant he returned home. The winter had a lot of moments that it seemed possible that he would return to his biological family and as we fell more and more in love with our Miracle Man it became impossible to imagine our lives without him. I knew what we had gotten ourselves into and I believed in what we were doing as surely as I knew that if he left us I would never be able to fully piece my heart back together. We are beginning our lockdown this year with the first of two court hearings to finalize our adoption of Miracle Man. Before we are off lockdown this year he will legally be a member of our family.

Like I said, this winter is different.

Last year he was an infant so in between heart stopping monitor alarms, specialist appointments and visits with his case workers and biological family he slept most of the time. We were very lucky that he almost never cried, we actually did not hear him cry on a regular basis until he started teething. This year he is a toddler. Wow. How time flies. He is crawling now and will probably be walking long before we are off our lockdown. He takes few naps and thanks to the imminent arrival of molars, he is often not a happy camper. He keeps me on my toes all day, not due to medical emergencies this time but due to his hilarious and unpredictable baby antics.

Surviving The Winter

I am a planner by nature and this year I have had plenty (probably too much) time to think about the upcoming six months of lockdown. I have come up with and rejected so many plans for how we will spend our time in the house this winter that it is insane. There are a few things I want to accomplish this winter but I am trying to refrain from making a must-get-done-list because that turns me into a crazy Monica Geller, Type A monster. Ideally I will at least work on the following tasks this winter:

  • Continue reading my way through The Western Canon
  • Sort and declutter to have a massive yard sale in the spring
  • Help Miracle Man learn more words, signs and to walk
  • Publish at least one freelance article a month to build my portfolio
  • Get myself back up to running a 5k with ease (thanks to my new treadmill)
  • Create more healthy recipes for the family
  • Try to make some big-ish decisions that are hanging around my head

The other part of this isolation is the eye-opening experience of being unable to leave your house to visit friends and family. This was a surprising discovery for me last year. As long as you are healthy you can visit us, we just cannot come to you. This dramatically cuts down on the people you see and talk to, at least it did for us and I can already see it going that way again this year. I can count on one hand (and that’s if I am being generous) the number of people who went out of their way to stay connected with us during our germ exile last year. The main result of this, after you get over your feelings being a little bruised, is that you soon begin to feel like you are starring in your own version of The Shinning, with less murder and alcoholism thank goodness. I adore my son more than words could say but last year he was not a very good conversationalist. This year at least he will be able to have the big talks with Mama: babas, toys, songs, snacks, ABC’s and animal noises. This year I know what to expect though, so instead of being continually disappointed by who is not showing up or reaching out I am going to be extra thankful for those who do. It makes all the difference to have someone stop over, even if it is for a quick cup of coffee and a chat.

The Last Week

This week has been so busy as we prepare for Miracle Man’s first birthday party (held early so he could have one before lockdown), court next week and the beginning of our germ hiatus. It is such an interesting place to be. I know what to expect of my next six months and yet I know it will be nothing like last year. So I have been checking off my lists, running my errands and marveling over things like trips to the grocery store because I know how soon those things will be missed. I am sure the pets cannot wait for the return of RSV season lockdown/ Mama and baby are here to play with us all the time. I am standing on a precipice, about to begin a new and second adventure and I am intrigued to see how it goes this year.

Wish us luck and send us germ-free happy thoughts.

Advertisements

Leaving Behind The NICU Machines

Final Goodbye

A lot has happened since our little Miracle Man was two pounds and in NICU fighting for every breath, for every heart beat. It is almost hard for me to remember where it all began as I look at our healthy, bouncing twenty-six pound boy. Our son who came home with more wires attached to him than most TV’s have is now completely cord and monitor free for the first time in almost eleven months. Hallelujah, and yet I am terrified. It is so hard to let go of the security those machines provide, especially when you have been able to depend on that technology from day one.

Miracle Man came home on oxygen 24/7, a heart rate monitor, an apnea monitor and a pulse ox monitor. First thing to change was the amount of time he was on the monitors, then the oxygen left during the day, then the oxygen left a night, then the heart rate and apnea monitor left and now we are finished with the pulse ox monitor. No cords, ever? No numbers to verify how healthy he is at the exact moment I want them? How does that work?

Monitors, Monitors Everywhere

Monitors, Monitors Everywhere

Preemie Parents

Preemie parents are a different breed, those first few glorious days, weeks and months with our little ones are colored by the constant worry about their bodies not being ready for this big world. Every breath is precious, every obstacle overcome is headline news in our lives, even the simple ones. We gain ridiculous amounts of knowledge in a short amount of time. I use words and acronyms now that I forget are not commonplace for most parents. Few parents can tell you the typical heart rate, respiration rate and saturation levels of their babies at sleep, play and while eating. For most parents, once the baby starts sleeping through the night the parents are able to sleep through the night as well. Preemie parents are setting alarms to get up and check the various monitors all night. It is just a different life. Not better, not worse, but different.

MY

Goodbye Hurts

I know when we first came home from NICU I was so upset that our monitors at home did not display numbers like the monitors in the NICU. While sitting beside our Miracle Man’s crib in the hospital I could watch the numbers and the pattern of all his various vitals and I could see alarms coming before they started and sometimes intervene before the event occurred. I did not have that luxury when we got home. I had to wait for the alarm to sound. That was my first sign that I was hooked on the ability to instantly check in on my son’s vitals and health. No wondering and less worry I could look and know in a second.

Each machine leaving was an adjustment. We would go to a specialist appointment (Can I get an Amen Preemie Mom’s? We see those specialists more than our husbands sometimes) and leave one machine short and I would be simultaneously happy dancing through the parking lot and fighting off panic. It would take a few days of me feeling like I could not take my eyes of Miracle Man for a second before I would relax and adjust to the new limited machine configuration.

Now we are down to zero machines and I am in the middle of my happy dancing panic. Miracle Man fell asleep easily and now comes the hard part; I am supposed to sleep with no verification that he is doing well. I know he is doing amazingly well and that he will be fine. I will just have to remind myself that about a million times between now and morning.

God’s Plans Amaze

 I have not had a moment to spare lately to update everyone following our journey. Here is a warning ahead of time: hang on to your hats (it has been a crazy ride) and grab some tissues (it has been miraculous and beautiful). As I write this I am listening to my beautiful and miraculous nine week old son cooing in his bassinet as he takes a nap. If you had to stop and reread the last sentence a few times to be sure it was real you have a rough idea how surprised we are that this is actually happening. To ease understanding while we fill everyone in here are some notes ahead of time; we cannot and will not be releasing our son’s name so for now he will be known as Miracle Man, his case is a legal risk fost-to-adopt case, he was our first placement, our agency almost never has infants.

Last I updated the blogosphere about our progress in the fost-to-adopt process we were waiting to finally have our safety check complete so we could begin the matching process. Getting licensed was an unexpected ordeal with many pitfalls, false starts and errors along the way. I now know why each one happened and by the end of this tale you will as well. As our Friday appointment approached to finalize our certification as a foster care and adoption home we were so nervous that yet another issue would crop up and disturb the process. For this reason we were trying hard not to get our hopes up about having children in the house anytime this year even. The day before our safety check my friend and neighbor calls to tell me that her five year old daughter came downstairs that morning with interesting news to report about our certification. Addy informed her Mom that the night before she had prayed that our safety check would go well and after her prayers she talked to Santa (she apparently has direct contact with Santa) and he informed her that because we had our Christmas Tree up and we had been good that we “for sure” were getting a kid by Christmas. The sweet innocence of this statement lifted our hearts but we informed Addy that you never know when it could happen but we hoped Santa was right. We did not think Santa was telling Addy the truth but it did not prevent it from being a cute tale.  The big day arrived and everything (for once) went smoothly, we were certified and we could begin the matching process. We jumped into matching with both feet. The first week and a half after we were certified we were following up on potential matches and getting calls about new possible matches multiple times a day, every day. We knew there were a lot of children in the foster care system looking for forever homes, however we did not fully grasp how many there really are until we began the matching process. It was overwhelming at the beginning to be discussing so many possible options but we were trusting God to lead us to the right child(ren). With all these possibilities nothing was really moving forward with any speed and we still thought it would be months before our house had little souls within its walls.

It was at this time that our lives took off in an entirely new direction. Our Case Worker told me that when she did our safety check it broke her heart to see the crib in our bedroom because she was fairly certain she would never be able to match us with a little one to go in that crib. Then a week and a half after our certification she was in her office working on another family profile when she felt the need to stop and go for a walk around the office to stretch her legs and clear her mind. On her travels she passed the desk of the Placement Specialist at our agency who was on the phone doing the intake process to place a child into foster care. Something about the call caught our Case Worker’s attention and she went to stand in the doorway to hear what was needed. The Placement Specialist waved her over and told her the situation. They were getting a six week old infant who had been born ten weeks early and was currently in NICU. Our Case Worker said as soon as she heard this part she knew he was meant for us, they instantly suggested us to County (during the intake call) and we were chosen for Miracle Man before his intake was even completed. Had she not decided to go for a walk who knows how things would have played out in this case, we may never have even made it to consideration for his case since we were so newly certified. The court hearing to make it official was two days later and that night Tyler and I were finally able to go to NICU and meet our little miracle.

The moment I laid eyes on Miracle Man I knew he belonged with us and he had found his way home. The next week was a long haul as we were basically living in NICU watching our little guy get stronger by the moment. Out of sheer curiosity Tyler and I decided to look back and see if we could figure out what we were doing while our Miracle Man was being born. As soon as we did this God’s hand in this match was undeniable to anyone involved in our case. Miracle Man was born on the morning of October 7th, literally one minute before he was born we received the call that our background checks had been miscoded and that our certification would be delayed. I was in tears when I saw the hand of God holding us off to ensure we were available to welcome our son home. As always, though we often forget, God’s plans trumps our plans every time.

Now to get to the bragging about our perfect little Miracle Man.  He has a beautiful buttercream complexion, strawberry blonde hair and deep blue eyes. As I stated he was born ten weeks premature and he was only 3lbs. 4oz. when he was born. Due to how much he had to fight to stay alive those first days his weight dropped down to a little over 2lbs. Due to his prematurity he was born severely anemic, with a hole in his heart and pretty significant RDS (Respiratory Distress Syndrome). Most, if not all of, these issue are things that will improve with time. By the time we left NICU he was up to 6lbs. 6oz., his anemia was improving, the hole in his heart had closed (although he still has a murmur), he was down to only ¼ liter of oxygen needed and he had gone five days with no serious incidents of Apnea (where he forgets to breath) or Bradycardia (his heart rate dropping way too low).  He came home still on his oxygen and an Apnea monitor that alarms if he stops breathing or if his heart rate goes too low or high. He has been doing amazingly well at home, he has few alarms and often is able to self-correct and begin breathing on his own. We are still in for a long road with doctors, therapies, case workers and early intervention services but we are sure he will continue to get stronger. He is surprising everyone with his strength and ability to improve by leaps and bounds.

As for the legal risks involved with his case, that has fewer clear cut answers and plans. Miracle Man has five other siblings out in the world, none of whom his biological parents were able to retain custody of or parental rights.  Given the biological parent’s long and storied history with the county the case worker wanted to ensure she found a placement for Miracle Man that could work as an adoption resource (where we are headed). Nothing is for sure until we go through the process but every case worker involved in this case is very confident that this will quickly begin moving in the direction of Adoption. We knew he was ours from day one and while we know there are no guarantees that is no different than parenting any other way. We are never promised a tomorrow with our children and all any of us can do is love them every day we are given with them. We are looking at a long process of 15-22 months before any adoption would be complete. It is a beautiful and tragic miracle that we are able to welcome him into our family and we are thankful for his biological parents and their love for him. They are just not equipped to care for him as he needs. This little Miracle Man has a lot of love in his life.

Well, now that we are all on the same page with our newest fost-to-adopt adventure I am going to put this laptop down so I can return to my favorite activity, snuggling with our Miracle Man and watching him grow and thrive. God bless you all.