Being parents to a micropreemie is not easy. I have heard that parenting a preemie is much different than a full term baby. Even though Camden was a 35 weeker, he is now a full term baby to me. That statement is so right! You worry the same, but there is something else there. You are constantly worried about the choices you as parents are making. Wondering if the decisions you make are the right ones. You look at milestones in a whole different light. Same excitement but also some relief. We want to the best we can for Ailyn, and sometimes trying to figure out the best thing is not very easy. Very stressful in fact. I have been asked how we are still so strong, after all we have been through so much. To be honest, I have NO clue how. I know that I am barely hanging on some days. Having to be home bound all day, all night, everyday, for over 6 months wears on you. I know we still thank God every single day we have Ailyn here with us. We know how extremely lucky we are to have our Strawberry. That being said..... it's been a very tough journey so far. I pray we are making the best choices possible for Ailyn.
Ailyn has had a long week of appointments from therapy, GI to an eye appointment. Therapy is going great! Her OT has been over twice since the surgery and has noticed a difference already. Her suck is a lot better. She even makes new sounds with her tongue, it's pretty funny. The GI appointment didn't go as well. They are not happy with her weight gain, and she has dropped some on the preemie chart. This is the first time that she has dropped off "Ailyn's" growth chart. We are talking with her pediatrician, GI, therapists and nutritionist to come up with a plan. We have tried going up to a 30 calorie formula and she couldn't handle it. So we are exploring our options. There is a possibility Ailyn will need a gtube. A gtube is a feeding tube surgically inserted in her belly. We all agree to give the tongue a good 3 weeks to work better. We notice a difference in her feedings but not a huge change yet. She still struggles with feedings. It breaks our hearts to see her have a hard time. (no solids yet!! It's just empty calories and not enough nutrition) 
Ailyn will be having eye surgery in late spring. The eye doctor said her eyes are worse than 4 weeks ago. Since Ailyn didn't start crossing her eyes until 5 months old, he wants to wait until she is over a year for the surgery. He has seen preemies (who didn't cross eyes from birth) correct themselves. He increased her patching to 2 hours a day. That is not going to be very easy, but it will get done ;) The doctor also is talking with her pediatrician about having an MRI done to rule out anything neurological before surgery. 
Want a good update?? Yeah, me too! Ailyn has been so fun lately. All 3 of us have been enjoying her so much. I will walk into a room and Camden will have Ailyn giggling so hard. She is rolling very well now. Today I put her on the floor and went it the other room, I came back to her half way across the room. She is going to have one tough head, my head hurts every time she hits the wood floor!If you have listened to me vent for the past two days THANK YOU! If you have given me advice, THANK YOU! If you are sick of listening to me vent but put up with me, THANK YOU! I really do appreciate the support.
