Joseph, my first miracle baby, was born at 35 weeks with a birth defect called Gastroschisis, where all of his small and large intestines and part of his stomach were outside of his body. He has endured 6 surgeries and multiple complications and despite everything, he's the happiest baby I have ever seen and is always smiling!

Christian, my second miracle baby, was born at 33 weeks. Because of his prematurity, he suffered a grade 2 IVH (bleeding in his brain) and we are not yet sure how this will impact his life and development. Despite this and some other premature issues, he is thriving!


Thursday, November 8, 2012

Tied up



My mother said it perfectly when she told me that "If it's not one thing, it's another". Sometimes it certainly feels that way with these two special boys. I brought them to an IBCLC (International Board Certified Lactation Consultant) two weeks ago to try and figure out why Christian is having such a hard time eating (yea, I know, looking at him you wouldn't know it). In the beginning, I attributed it to his prematurity, then to a possible dairy sensitivity. Despite him growing and developing and a dairy-free diet, the issues persisted and some worsened. He would be nursing all the time, unable to sustain a latch, clicking his tongue, swallowing large amounts of air, and fussing and crying while trying to nurse from all the tummy cramps and pain. Turns out, both Christian and Joseph had tongue and upper lip ties! The IBCLC recommended a pediatric dentist in Albany, NY: Dr. Lawrence Kotlow. He does the surgeries with a laser instead of scissors, so no sedation, numbing, or stitches are needed. I did some further research on this doctor and found that he is the best in the country for this type of procedure; people have flown from Hawaii and Canada to have him do the procedures on their children!

We made the drive to Albany, NY and spent the night in a hotel. The following morning, the boys had their procedures. We were in and out within an hour. Christian did better than Joseph. I was under the impression that they would use laughing gas on Joseph but they didn't and when he came back, he was drenched in sweat. We learned about the aftercare, which required us to stretch out both the lip and tongue areas on both boys three times a day to re-open the surgical sites so they didn't reattach. The 6 hour drive home was rough but Joseph seemed to have it the worst. He would wake up about every hour, scared out of his witts, mouth bleeding, and screaming in pain. Christian woke up a couple times but I was able to nurse him for comfort and he was happy with that. That evening the stretching began...

...I used to think that one of the worst pain a mother could feel was watching her child suffer and not being able to do anything about it. I was wrong. It is so muchh worse when you are the one causing your children pain, regardless of it being for their own good. I can't even begin to explain what it feels like to have your husband pin your child down so you can stretch open wounds, with your child bleeding and screaming and crying and choking. To see the look of fearful anticipation flood their eyes every time you go to wash your hands. To feel your child fight with all their strength against what is being forced upon them, to feel them never succumb but continue to fight until it's over. I began worrying that my children would begin to fear me as they associated me with pain. My heart hurt each time I had to do this and I would break down crying, my hands would shake so hard I would loose my grip. It built up a new layer to the callous that I have had to develop with my children. I see it as another scar I wear on my heart. It has become shattered time and again with the pain for my children, yet their love has given it wholeness and the strength to endure anything.

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