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Feeding |
I continued with breastfeeding and supplementation until Jessica was 6 months old. Why? Because I was determined. My other two children had breast milk for 6 weeks due to not being able to attach and suck properly, and I was satisfied with that. But the information around that says that ds babies are more susceptible to getting sick made me stick the whole trying process out. I wanted to get Jess through the bad flu season with as much immunity as she could have.
I took the Motilium for 4 months and persevered with breastfeeding. Jess was very poor at feeding (from low tone around her mouth) and the milk would leak all over my stomach. I would then have to top her up with formula. This all meant that feeding took a long time. It is interesting to note that the rest of the family came down with quite a few bugs over the first 4 months and Jessica was the healthiest out of us all.
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Genetics |
There were problems with the DNA testing for Crouzons but finally the result came through - negative. We were so thankful that she only had one syndrome to deal with.
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Down Syndrome Baby group |
We went to the first Down Syndrome baby group (with the FECS team) when Jessica was 14 weeks old. I was excited to finally meet other mothers and see other babies. Disappointingly I was the only one who turned up, but because of that I got to spend time with the team. They were all amazed with how good her gross motor skills were. I left feeling rapped.
The next time we went to playgroup Jessica was 4 months. She had been smiling for a week. We had been desperately hanging out for her smiles. I had been really worried about why wasn't she smiling but I knew that her facial muscles were not strong and I really feel that she needed to strengthen those muscles first before she could smile. So when the smiles finally came tears came to my eyes. And with those smiles a week later came a giggle too - two blessings together.
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Jessica's Heart Defect |
When we took Jess back for her 6 week pediatrician check up, we were told that Jess would need to have a heart check up as half of all DS babies are born with a heart defect. We were told that nothing could be detected with the stethoscope so there was nothing to worry about. No appointment was forthcoming so I kept ringing the pediatrician until finally one was made, though we had a 1 1/2 month wait.
We took Jess to see the cardiologist who upon listening to Jess said that he thought that there wouldn't be a problem.
He did the ECG but was proved wrong with his initial diagnosis. Jess did have a problem. She had a AVSD (basically two holes that connect to make one large hole) and only one valve where they should have been two. We were absolutely stunned. I will never forget that moment. I don't remember much of what was said, only my feeling of 'why God?'.
Once home and I had calmed down I hit the internet to find out what it all meant.
Three weeks later we went to see the cardiac surgeon who explained the operation, and explained that there was a long waiting list, and unless she deteriorates it could take up to a year in wait. We were to see the cardiologist once a month until the operation happened.
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Milestones |
A friend had a baby two weeks after Jessica was born. I have discovered that I have to guard my heart when I see the baby. She is way ahead of where Jessica is and to be truthful it hurts that Jessica is not at that stage too. I had to tell myself not to compare her. But instead tell myself that in the spectrum of Downs Jessica is doing exceedingly well.
At 4 1/2 months Jess weighed 5.85 kg and was 59 cm long.
At 12 weeks Jessica:
* started to make speech-like sounds
* held her head up when sitting on our knee
* rolled over from her tummy to her back
At 14 weeks she:
* reached out to grab a toy
* put things in her mouth
At 4 months Jessica:
* smiled consistently at faces
* giggled