I came across this mom's blog who unexpectedly gave birth at 24 weeks to her son Bryce (www.brycemoline.blogspot.com). I usually have plenty of my own words with which to fill my blog, but her words spoke so truly to our own situation that I felt compelled to share it on here. The description of placing the ng tube is exactly how we feel.
" We've also had some equipment to contend with. There was the oxygen concentrator that hummed all day and night while Bryce was tethered to it for the first months we were home. And the tiny but mightily awful NG tube. NG as in nasogastric tube. As in you hold him down while I shove this tube down his nose and try not to land it in his lungs but rather in his belly and then let's make an educated guess as to which it did land in, all while he screams and I cry. But back then we were more accustomed to how unusual our lives were. Everything in our lives was upside down. We didn't live at home and then we did but it didn't feel like home. Our old friends were new friends and our new friends (nurses, doctors and therapists) were old friends. Upside down was very much right side up to us at that point.
We discovered that if everything seems like its falling apart it probably is but if you try hard enough, cry long enough and pray loud enough you can probably survive it.
And slowly but surely our lives began to resemble those of other new parents, despite us having been parents for nearly half of a year. We returned to home and then to work, we went through the day on only a few hours of sleep but were rewarded a million times over by the joy of a baby finally in our home, in our bed, in our lives and forever in our hearts.
Then around thanksgiving Bryce smiled and our worlds changed forever. Every day every thing that we did was to illicit a smile from his sweet face. And everything else was to pass the time until we could return to his smiling face."
When people tell me, "I don't know how you do it," I usually answer, "neither do I, but we have no choice, and we love our babies and feel so blessed to have them that we just do it." I love that she writes that if you "try hard enough, cry long enough and pray loud enough you can probably survive it." I still break down when I hear the song "Before the Morning" on the radio. It instantly brings me back to our days in the NICU, and I realize that not only have our babies survived the unimaginable but so have we. Jim and I are stronger because of this whole crazy experience. We are a team; we have to be.
Our lives are just now beginning to feel like the lives of other new parents and our babies are almost 8 months old. Since the babies only go to doctor's appointments, we don't encounter a lot of people; however, when we do encounter others, it seems that strangers feel the need to remind me that we are not quite like other new parents. One lady in the waiting room asked me how old they were and when I told her they were almost 8 months old, she looked shocked. She then asked me how much they weighed. I told her their weights and even told her they were born extremely early and weighed 1 lb. at birth. Her response? "Well, my 3 month old weighs 18 pounds." Thanks for sharing lady! Of course, we get the silent stares in the elevator as people try to stare at Cade's ng tube without me noticing. I really want to say, "It's an ng tube; quit staring. If you have about 2 hours, I can share the whole long story with you - otherwise, mind your own business!"
Then, after all the frustrations of appointments, therapies, feeding challenges, etc., the babies awe us and we have to just take a step back and marvel at the miracles we have been given. Cade has started to smile a lot more now. When I walk into the room, the sweetest grin creeps across his face and he looks up at me with eyes that say, "I know you Mom, I love you, and I am so excited to see you," and in that instant, all that matters is that my baby boy loves me. Last week, we were blessed to hear Camdyn's first laughter. It was the sweetest, most precious thing I have ever heard. Brenna was dancing in front of Camdyn, and I guess Camdyn thought it was really funny because she just started chuckling and giggling. When you have to wait for each milestone for so long, it really is all that much sweeter. I know that many more days of frustration and challenge lie ahead, but I also know that many more days of complete and pure joy do too.