Sunday, March 29, 2009

Big Changes

Abraham was put on high flow oxygen by nasal cannual last night. He was agitated by the CPAP mask. (new pictures without breathing tube or fish lips). This is a good thing because it's a less invasion way to maintain oxygenation. His tube feedings are up to 40 cc every 3 hours. The calories are 26 per ounce. I am very upset because they added human milk Fortier, pregestimil powder (formula, yuck) and bene protein. The whole mixture is 50 cc of breast milk, 1/8 teaspoon of pregestimil and bene protein. I understood the human milk fortifier however I feel that they should have got my consent for pregestimil. I absolutely, 1o0% did not want any formula at all. They did this without even discussing with me. Some of the first ingredients in formula are high fructose corn syrup (cheap sugar). I also did not want formula because of the toxic chemicals that are found in it (China) and the cost. If our insurance does not cover the cost then we will be stuck paying for formula that we did not even want our baby to have in the first place. I don’t know what I can do to make my breast milk have more calories and fat. In fact I don’t think I can do anything to increase that. It is what it is. Maybe the La Leche League would have some suggestions. Also if he can tolerate oral feedings they will be mostly by a bottle. I asked about alternatives to using a bottle such as cup, medicine dropper and the new attending indicated that this is not an option at this hospital. I would be willing to be there to do this even. I am refusing liquid formula however I feel like I will have to make a note to post at the bedside indicating this since different nurses and doctors take care of him. I am not there 24/7 so things are just done. It is so routine for them to give formula that no one thought about getting my consent to do so. I won't be able to give him his first oral feed either. It has to be done by an occupational therapist, it's called binky training (a pacifier with a syringe and his breast milk mixture. He or she will have to ensure the suck, swallow and breathe aspects of feeding. He might go home on oxygen and tube feedings. I might not get to breast feed him at all. We don't know yet. If I do it will be 2 times a day and everything else will be by bottle or tube feeding. I really envy the women that don't have to go through all this crap. They can go places and just feed their baby. I feel like I have been robbed. What did I do so wrong that I would have a baby that requires needs like this? There is a great chance of cerebral palsy which will manifest itself at age 2 or later, when he fails to reach milestones. I definitely think he can hear, see and react to stimuli, I just don't know if he will continue this or not. The attending doctor did indicate that he is doing well however that he will have some degree of disability. His gallbladder is enlarged however they don't know why and are not treating the issue. He is on oral caffeine and thyroid medication. He does not have an IV. He has tube feedings and high flow oxygen. He is still in an incubator because he can not maintain his own body temperature. This week he will get his first set of immunizations. Tomorrow he will be 2 months old however he is not expected to act like a 2 month old that was born at term would. After all he was supposed to be inside of me until May. He reached the 5 pound mark and is a little over 17 inches long.


  1. Karen-
    I went through the same emotional roller coaster regarding the supplements in the milk and the challenges of feeding Micah (BeneProtein, formula, bottles, pumping, learning to nurse while still getting bottles). A very understanding nurse explained to me that there is nothing else I could do to increase the calories in my milk and that the supplements were not a permanent thing. Hang in there. You are an awesome mommy. Abraham is an amazing little boy already, I get that feeling every time I see him. You are so attentive and caring for Abraham and advocating on his behalf. There is nothing you did to be in this situation. You are loved very much and are in my prayers constantly.

  2. Karen and Glenn,

    The pictures are great, it is wonderful to see more of Abrahams beautiful face! I thought the #'s 214-216 redaited love. Thank you for sharing.