Brooke is currently 18 months old as I begin this , but I will start where everything should be started, at the beginning.
The entire pregnancy was stressful from start to finish. I had bled almost daily from week 4 to week 21 and baby was very inactive, and I had been having weekly scans. I was worried, the Doctors weren't. We had been assured that our baby was fine, perhaps a little small, but nothing to be concerned about. It did not surprise me in the least when my waters broke at 34 weeks and I had to have an emergency c-sec the following day. What did surprise us was as her first weeks unfolded it became very clear that we would not be taking a perfect little baby home.
On day one we had a perfect little baby, born a little early, quite small 4lb 6oz, chubby because she was just 31cms long, A perfect little chubby preemie (with funny ears but surely they will come right?). On day two we have a baby with a large cleft palate, two thirds of her hard palate and her soft palate are clefted, okay thats awful and breastfeeding is out the window. I was devastated. It seems silly now that I cried my eyes out over the cleft.
Day three, our perfect little preemie with a cleft showed signs of heart failure. She had her very first echo: she had a hole in the heart and the Doctor wanted to discuss it with us. I said to Rhys, "Okay hun, we want to hear small and we want to hear A.S.D." (I was familiar with small A.S.Ds as my eldest had one and she was fine after catheter surgery to fix the hole aged 3) I shouldn't have said it, Doctor says "Large V.S.D" and that wasn't the best news ever.
Over the following days I noticed Brooke's small eyes and jaw, and those ears didn't appear to be springing to life, but: okay, we have bigger fish to fry right now.
She became so unwell that it was clear that she would need surgery sooner rather than later. Originaly they had said 6 months, then 4 months, then "we will try to get her to 3000g". She was well under her 1995g birth weight; she had lost 25% of her birth weight by the time she was ventilated. Rhys suggested to me 3 months? I said "Hun, she will be lucky to last 3 weeks".
So that was that, her heart was failing rapidly, at 2.5 weeks old she was put on a ventilator and we were sent up the country in an air ambulance to the Starship Childrens Hospital (where miracles happen everyday) for 8-hour heart surgery where they stopped my 4lb baby's beating heart and somehow fixed 5 holes in her walnut sized heart. The main offending hole measured 12mm by 8mm and is described as "huge". She was 3.5 weeks old when her precious life was given back to her.
Right, so that's out of the way! Onwards....
Her feeding difficulties are "more than to be expected with a cleft" so her growth is a little slow, but she finally made it to the 3rd centile(only just but fell quickly under again and has so far not retuned). So our baby is 11 weeks old and she is finally sent home with a zipper scar down the middle, a few negative chromosomal tests (no defects found), a failed hearing screen, a feeding tube and pump to feed her, a few follow up appointments for the next month and a giant bag full of medical equipment and medications..... Our new life with Brooke has begun!
More to come...
The entire pregnancy was stressful from start to finish. I had bled almost daily from week 4 to week 21 and baby was very inactive, and I had been having weekly scans. I was worried, the Doctors weren't. We had been assured that our baby was fine, perhaps a little small, but nothing to be concerned about. It did not surprise me in the least when my waters broke at 34 weeks and I had to have an emergency c-sec the following day. What did surprise us was as her first weeks unfolded it became very clear that we would not be taking a perfect little baby home.
On day one we had a perfect little baby, born a little early, quite small 4lb 6oz, chubby because she was just 31cms long, A perfect little chubby preemie (with funny ears but surely they will come right?). On day two we have a baby with a large cleft palate, two thirds of her hard palate and her soft palate are clefted, okay thats awful and breastfeeding is out the window. I was devastated. It seems silly now that I cried my eyes out over the cleft.
Day three, our perfect little preemie with a cleft showed signs of heart failure. She had her very first echo: she had a hole in the heart and the Doctor wanted to discuss it with us. I said to Rhys, "Okay hun, we want to hear small and we want to hear A.S.D." (I was familiar with small A.S.Ds as my eldest had one and she was fine after catheter surgery to fix the hole aged 3) I shouldn't have said it, Doctor says "Large V.S.D" and that wasn't the best news ever.
Over the following days I noticed Brooke's small eyes and jaw, and those ears didn't appear to be springing to life, but: okay, we have bigger fish to fry right now.
She became so unwell that it was clear that she would need surgery sooner rather than later. Originaly they had said 6 months, then 4 months, then "we will try to get her to 3000g". She was well under her 1995g birth weight; she had lost 25% of her birth weight by the time she was ventilated. Rhys suggested to me 3 months? I said "Hun, she will be lucky to last 3 weeks".
So that was that, her heart was failing rapidly, at 2.5 weeks old she was put on a ventilator and we were sent up the country in an air ambulance to the Starship Childrens Hospital (where miracles happen everyday) for 8-hour heart surgery where they stopped my 4lb baby's beating heart and somehow fixed 5 holes in her walnut sized heart. The main offending hole measured 12mm by 8mm and is described as "huge". She was 3.5 weeks old when her precious life was given back to her.
Right, so that's out of the way! Onwards....
Her feeding difficulties are "more than to be expected with a cleft" so her growth is a little slow, but she finally made it to the 3rd centile(only just but fell quickly under again and has so far not retuned). So our baby is 11 weeks old and she is finally sent home with a zipper scar down the middle, a few negative chromosomal tests (no defects found), a failed hearing screen, a feeding tube and pump to feed her, a few follow up appointments for the next month and a giant bag full of medical equipment and medications..... Our new life with Brooke has begun!
More to come...
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