June 29

Abraham is growing nicely, 11 pounds 11 oz today on the home scale that we borrowed. We did demand feedings over the weekend (feedings when he shows signs of being hungry). Abe had less reflex, was happy, playful and slept soundly. I was very nervous about this given the strict every 3 hour feeding schedule set by the medical professionals. Also his doctor did not discuss this with me. A friend of mine pointed out, we don't eat every 3 hours ,we eat when we are hungry so why would we push a baby with severe reflex to eat every 3 hours hours. Abe is very good at telling me, "hey mom I am hungry". His cry and actions are different. I did set my alarm the first night for 4 hours after his last feed just in case he did not remember. He woke up 20 minutes before my alarm. However I tried to give him all of his medications orally and that did not go over so well even if mixed with breast milk. I gave him his medications with his NG tube. I breastfed him last night around 11PM, he fell asleep then I gave him his vitamin with iron around midnight. At 1AM he woke up so he took a bottle. He was very fussy and vomited so we did his 3AM and 6AM feed with the tube. I was really hoping to be done with the tube feeding. I do get more sleep doing the tube feeding however it is not normal and I feel it inhibits him developmentally. I think the vitamin might have contributed to him vomiting. I am hoping that his doctor takes him off the iron based on the lab work he had last week. We met with a lactation consultant at the Navy Hospital last week. She is very nice and a Christian. The scale showed he only took 15 cc after 40 minutes of breastfeeding. He seemed happy and content and fell asleep so we feel that he took more. We are meeting with her again this week. She was a NICU nurse before so she has experience with infants like him. The home therapy professionals came today. He does qualify for services since he is developmentally delayed (on the actual age of 5 months). Adjusted age he is almost 2 months old. Please pray I am feeling a little discouraged about his head control, the ability of him to focus his eyes and his ability to eat like a regular baby. He required a tube feeding for his 3PM feed. He meets with the pulmonary doctor tomorrow. It would be so nice to take him off the caffeine, monitor and oxygen. The lactation consultant recommended one thing at a time with him so that he is not overstressed. I would love to be done with the tube feeding however I would say my first choice of less medical intervention would be the caffeine (contributes to reflex and premature babies usually do not require at this age). The next step would be the oxygen then the monitor. When he is weaning off the caffeine it would probably be a good idea to keep the oxygen going and when he finally weans off the oxygen it seems like he would still require home monitoring on the pulse ox. We received a letter about purchasing the pulse ox. I don't know how long it will be required and I don't really want to purchase it. It is medically necessary at this point therefore I don't feel like we should be forced to purchase it. Trust me it is not a luxury item. In fact it gets in the way of several things however it is for safety especially since he is on oxygen. Please also pray, the nurse practitioner that came to the house today measured his head much larger than what the naval hospital medical assistant got. This could be a sign of increased intracranial pressure therefore would require medical intervention with a shunt. I asked if I should contact neurosurgery about this and she said that it is not necessary. Unfortunately the home therapy programs support bottle feeding and not breastfeeding. Bottles are so annoying. I have pump the milk and if it is from the refrigerator I have to warm up it up while Abe is fussy, feed him then clean and sterile it. I absolutely did not want to do this because I did not want to waste money on bottles and I hate washing dishes. The bottles that were recommended to us, Dr. Brown Natural Flow, are not very cheap either. 5 bottles on Amazon were $17.00 plus tax. Babies R Us I think around $23.00. I could have used that money towards a baby toy, professional pictures of the baby, new clothes for him or milk shakes for myself. Oh well I guess it sure beats a tube down the nose. I will give an update about what pulmonary doctor says about the affine, oxygen and monitor. I think the clinic can upload the data from the pulse ox to see his trend. We did have an issue with Walgreen's Option Care, home medical equipment provider. They only give us one probe per week and some were only lasting a day. I finally had to call the on call staff member at midnight on a Saturday night indicating that the probe stopped working. They did not see it as a priority since he was not on an apnea (absence of breathing) monitor. I told her, "the doctor ordered continuous monitoring; do you really think a former premature baby should not be monitored?" We got another probe delivered the next afternoon. This really upset me because what if something happened to him. Who is liable if the doctor ordered the monitoring but the company is not providing adequate equipment. Also they are still getting paid by the insurance company for the few days he was without monitoring. Our primary care doctor called them directly and now we have enough to last until July 15Th. If this continues to be a problem then I do have the option to switch to a different DME provider. Having worked on the other side of this,(I worked for Tricare as a utilization review nurse) I am very discouraged if other beneficiaries have experienced this same issue. Given the patient is a baby I assumed they would provide adequate home medical equipment.