This came as such a shock to us, as neither of our families have any history of birth defects. Marissa is also our third child, her older brothers were born without any medical problems.

Marissa's main problem right from birth was her breathing. Her airway would get blocked off very easily if she got on her back, or just in the wrong position. When she was one week old the decision was made for her to have a tracheostomy (trache). The surgery appointment was made and then canceled twice, as she was considered borderline for needing it. But, as the days went by it became more apparent that it was needed, so at two weeks of age she had the surgery.

We were very scared of the idea of her getting a trache. Neither my husband or I have ever even seen a baby with a trache and the thought of our child having to go through this was terrifying. The Doctors. and nurses assured us that it wasn't that difficult to take care of, and that her care would all become very routine. At the time it was very difficult to believe them.

Once the trache was in the next obstacle was Marissa's feeding. Having the cleft palate made her have to work so hard at eating. The hospital started her on the 'Haberman' nipples, which worked well, if she stayed awake. It was very difficult for her to drink very much at a time. To help her with calorie intake they increased the calorie of her formula to 24 instead of the normal 20. It did help some, but she still wasn't drinking enough. The Drs. began talking to us about the possibility of her needing a feeding tube. All we could think of was that she would have to go through another surgery, and have something else attached to her.

The Drs. decided to go ahead and let us bring her home at four weeks of age to see if her feeding would improve at home. I feed her on demand every 1 1/2 to 2 hours those first couple of months. I also had her weighed at our Drs. office twice a week to make sure she was gaining. It was very slow! But, it did continue to be steady, so we were able to avoid her having to have a g-tube.

She started eating cereal at 4 months and baby food at 6 months. That helped her gain weight more quickly, so she was dropped down to the regular 20 cal formula. She also started sleeping all night at 7 months.

Marissa has continued to grow and develop on schedule. She is still a little small, but has stayed in the 50% for her age. We are hoping to have her palate repaired and ear tubes put in this summer. She has never had an ear infection, but does have fluid behind one ear. Her trache should be able to come out shortly after that. Her trache really has become routine and just part of our everyday life, I can't image her without it!

As scary as the last eight months have been, I can see that we have all become stronger through this. We are so glad that God chose us to be parents to such a special little girl. For those families just entering into this, we want you to know you are not alone. You are welcome to contact us if you have any questions. We are by no means experts but are willing to share our experiences with you.