Topics of Discussion

Topics of Discussion
When was your *turning point*?

wisdom from the Preemie-l e-mail group http://www.preemie-l.org

Kris adds, "I always knew Lars would be ok (well, he HAD to, I don't think I could have survived myself...) especially after hearing him cry moments after leaving the womb. I was prepared for a baby that looked like a chicken, but somehow not prepared for the gorgeous creature presented to me. I held him in the OR for a couple of minutes - he was breathing on his own...soon to be vented, but at least we knew he could breathe. All the machines were just support, I thought of them as taking my place, helping him do the things he shouldn't have to do. The first week was the scariest - he swelled up like a tick before having a pda ligation at 1 week. I had to acknowledge the possibility that we could lose him then, but once he recovered none of us ever looked back. We were amazingly lucky - no infections or major set-backs of any kind, just a long, slow growing period. What we wondered (and still do - I feel like I live under Imelda Marcos' closet LOL) is whether he will be OK developmentally. His motor skills are amazing, and I know I will feel better when we get that first word. At almost 15 months he has never even been close to being readmitted into the hospital. We are so lucky, and looking forward to NOT feeling that way any more. I'd so love to take him for granted!"

Jayna responds, " Our turning point came much later than most I think. It wasn't until Brayden's first birthday that I felt I could finally relax....he was here to stay. Even at discharge from the NICU I had unsettling feelings that something wasn't right. Those feelings were correct. He has so many more problems than they had anticipated. I felt very uneasy when people would ask how he was doing, even at 10 months of age. All I could say is "he's well for now, it is still touch and go right now" I wanted so badly to say "He's wonderful. He's eating well, he's breathing all by himself (off O2), he's sitting.....etc." but the sad fact is I still can't say those things, and he is 18 months old now.
As weird at this may sound, things started getting a little easier when we got the diagnosis of brain damage (ACC, generalized atrophy, PVL, enlarged ventricles, cerebral necrosis and various other brain anomalies) at the age of 6 months and laryngotrachealbronchomalacia at 13 months. I finally had confirmation on what I had been feeling all those months prior. All those jerks, tremors, inconsolable crying, cardiac and respiratory arrest, and all the resuscitations weren't just a figment of my imagination. His problems were real. Once we had confirmation, I felt more comfortable because I no longer had to fight it alone. I had medical professionals prescribing treatments to help my little boy live. Now I have no doubt in my mind that he is here to stay, even with all his medical problems. It has been two months since we have really had to resuscitate him and that is a long way from multiple times a day, every day."

Kerri recalls, "My moment came very early in the piece. Jack, a 24 weeker, had a rocky start and things were touch and go for quite a while. I remember very clearly when he was 2 weeks old, the Director of Neonatal Services led rounds and when he got to Jack did the normal history etc and said "and we're winning this one". From that say on I never doubted that Jack would come home one day. However, I never really felt he was mine until many many weeks later when he was finally in an open cot. Once I could walk into the hospital and pick him up whenever I wanted, instead of having to ask permission, it really clicked that this little person was my son. I remember saying to his nurse "he was yours up until now - but now he belongs to me"

Kelly remarks, "I don't know if this was a turning point or what. The other day I felt like a parent to J for the first time. Don't get me wrong, I have always felt like his parent, but the relationship was via the hospital. I was holding him and we were just staring at each other. And then he just "smiled". I think he is too young for a social smile, but I was elated to see him whole face and gums, without the interruption of an oscillator or ventilator.... It was great.
For the first time I allowed myself to imagine my little miracle at home with me playing the "mommy". It was both scary and exhilarating. No more nurses to fall back on - me and my husband on our own.... I even dreamed of him being bigger and being breastfed :-) So maybe this was the "turning point" for me.
I can also remember him about to go into his first surgery, the look in his eyes as he was wide awake, staring in our eyes...He must have been saying "I am going to be alright". And then there was the time after his second surgery when they told us he would be out cold for the next day and we walked into the room 15 minutes after surgery and he woke up and looked at us calmly before drifting back to sleep. Whatever the case, I am thankful to have my little miracle."

Sharon says, "I never really had a turning point. I never felt like I would lose him. Once I heard his little squeak of a cry when he was born I knew everything would be ok. Even after we had him home for 5 months he got real sick and on the way to the ER he stopped breathing and they had to do CPR. Even at that point I wasn't scared. I just knew God wouldn't take this precious gift from me. Maybe it was denial but I do realize that anything can happen to change all of that, but I've been very at peace through the whole thing. I guess I'm lucky that way."

page 8 back to index go to next page