Finally new pictures

Abraham is still NG tube free. His weight was only up a little, 13 lbs 12 oz to 13 lbs 14 oz. However he had his immunizations last week so his appetite was decreased for 3 days.Although his weight gain is not much at least he is not losing weight. He usually does not want to eat at midnight or 3 AM. It varies from day to day thou. He wakes me up around 4AM to eat. He still has reflux but is less since the NG tube has been out. The GI doctor suggested taking out the Zantac since he is not wanting to take it. If the reflux continues and causing desats (low oxygen) then he will have a Ph probe study. If his appetite continues to be down then he will be put on an appetite stimulate. I feel that his appetite was down from the immunizations and not because of something that requires medical intervention. We are working on breastfeeding however it is difficult when you have a medical community that is pushing using a bottle since you can visually see what the baby is drinking.I did pick up a supplementer nursing system (alternative to bottles)(attaches to the breast with a bottle attached. This will allow him to breastfeed and we can see visually what he takes from the bottle attached. He is getting hungry now. Please pray that he will continue to grow well without the NG tube. He is almost 7 x his birth weight but needs to continue in the right direction. The growth chart shows that he went straight up.

No more tube feeds

Abraham's NG tube came out on his way to the doctor on Friday. I decided that since he has been taking mostly oral feeds either by bottle or breastfeeding that I would give it a try without. Also the last time I put it back in the hated it and it broke my heart to see him suffer through it again. It is uncomfortable to be put in however not as painful as other things that he has had done to him. I did not have official doctor's orders however today the Speech therapist,occupational therapist, pulmonary doctor and dietitian all agreed for a trial. Sadly they are recommending mostly bottle feeding since it can be measured. When we met with the OT/lactation consultant today, he was fussy we thought he wanted to eat however he wanted to sleep. The breastfeeding he did in during that appointment is not as effective as I have seen him do at home. The goal is for him to eat 7 x daily 4 oz. If he does not gain weight or loses weight in 2 weeks then we will do a trial of waking him up at 3AM for an 8Th feed. If that is not effective then the plan is to add Neosure to the breast milk. If this still does not work then the NG tube will need to be put back down and used again. I really don't want to use formula in fact the first ingredient is non-fat milk the second is corn syrup solids. Also one can is $16.00. I could use this money to buy him more toys to play with. This sure beats NG tube feeds which the all the professional feel he would be best without. There was also a change with his oxygen requirements. Since I did a trial run of 7 hours without oxygen a month ago and he did fine other than a few desats (low oxygen) while feeding his doctor has decided that he only needs oxygen while sleeping and eating. His o2 sats must be higher than 94%. If he drops below and comes right back up then he can stay off the oxygen. If he stays below for more than 5 minutes then he will need to be put back on. He will require consist monitoring again. He is going to have a echo cardiogram in 3 months to ensure that his heart is functioning well then a complete oxygen wean might occur. I really wanted him off the oxygen and thought that he would out grow that need before the tube feedings were done. However the NG tube is more invasive than the oxygen so I can accept this. He is moving in the right direction now he just needs to prove that he can grow on straight breast milk without the NG tube. Development: when I put him in his swing he reached for the toys on the tray without encouragment. The NP today felt that he is coo appropriately however has some asymetrical movements. On a side note his former NICU room mate, Yair is 10 pounds now and is out of NICU. He looks really good. He is still in the hospital however is closer to going home. His mother is far away from home I think around 3 hours and has another school aged son. If I figure out how to post pictures that I took recently I will.

Grandma visits

My grandma is here from Arizona. She thinks it is so cold here. I think mommy and I might a mild cold. We are both sneezing and mommy has a sore throat. I am recovering well from my surgery. Mommy still keeps a bandage over my head however my incision might be healed enough now for it to be removed. My monitor drives my grandma crazy because it alarms. I am doing fine but sometimes my sensor is not on my toe very well because I wiggle a lot. The home OT noticed that my right thumb was tight so she might make me a splint for it. Mommy is looking into some non-toxic therapeutic toys for me. Ones not made in China. It seems like all baby stuff is made in China or made out of all natural latex which mommy is allergic to. The home therapy people let me play with Christmas tinsel (with direct supervision). It is shiny and I like it however mommy feels that it is not safe for me or the cats. Also other babies play with it to. They wash it with bleach water but mommy still does not like it. She wants me to learn and develop but is a major germ a phobic. They are working on my hand/eye coordination. My doctor called Mommy yesterday I might get to switch to demand feeding (meaning I only have to eat when I am hungry) verses every 3hours day and night. Maybe mommy will get more sleep or worry that I am not getting enough and sleep at all. I know she won't let me go without eating trust me. Last week I 13 pounds 8 oz. I wonder how big I am this week. Mommy still puts me in newborn size but it's a tight fit. I think she is going to pack them away now. I am a big boy and want to wear big boy clothes. I have 2 hats that I can wear to cover my incision. Well I think mommy wants to try to take a nap now. My mommy has some new pictures she just needs to figure out how to upload.

Homebound

We r driving Abraham home now. He did well however he vomited with oral feeds, his body is swollen from surgery and he has some bad gas. eariler today we were concerned about urine output however he is fine now. he even pooped a few times. Dad left those diapers for mommy. Thanks dadaddy. he is sleeping in his carseat. A friend of mine since 1st grade was in town. we went to dinner in seattle. i wanted to be close to the hospital in case anything came up with him. he is doing great right now. thanks for all the prayers. his pain is under control however i am going to give him tylenol around the clock. thanks again for all the support given to us

Surgery recovery

abe did fine in surgery. he is on a little more oxygen but the plan is to wean him back down to 0.1 liters.i am learning to do this on my phone so some letters might not be capitized. he tried to drink some milk from a bottle however he is in pain. You can see the tube from the shunt under his skin. also he had scatch marks on him in a pattern. I asked what happened apparently neurosurgery staples the surgical sheets to the patients. I am not sure how to hold him to burp him since he also has a abdominal incision. It breaks my heart to see him in pain. if he does well then he will go home thursday. however i am nervous for him to seat in his carseat. i dont want him to hurt. the pain medication seems to be working.

Surgery 8/5/09

His pre-op appointments are tomorrow morning and his surgery will be Wednesday. We don't have the exact time yet. The OR is booked but the surgeon is trying to figure something out or at least have other people in his office figure it out. We will be staying at the VA Fisher House since his surgery might be at 6AM the next day. The anticipated length of stay is 2 days. Please pray that everything goes smoothly and that Abe does not have any set backs and recovers quickly. He won't be able to eat anything after a certain time frame which is going to be difficult or him. He likes to eat : -).

Still waiting

I called to schedule his surgery today and the lady that is filling in today had no idea that it needed to be clarified with the surgeon. It was supposed to be discussed at the staff meeting. He is in surgery all day now. Having been a prior adult and pediatric surgical nurse I know you don't page a surgeon during surgery unless it is urgent. Although pediatric surgeons are usually a little more receptive. Those in the medical profession will agree that surgeons a breed of their own. However God made them to help people and thankfully they can provide this drain to decrease the pressure on Abe's head. A scheduling issue is not urgent. It sounds like the OR is pretty booked this week. She tried to schedule the pre-op and anesthesia visit and they were pretty full too. She is going to call me back in the morning. This is a bit frustrating however at least this time around we can prepare. The night that we drove the the Navy Hospital I had no idea that I would be delivering a premature baby. On Saturday Abe was not sucking on a bottle or binky too well. I debated calling the neurosurgeon however he just had a CT scan a few days ago so there is probably nothing they could have done at that time. He is better now. If he did not have an NG tube then I would have taken him to the ER since he would not have been able to eat. Poor oral intake is a sign of increased intracranial pressure. He did finally suck on his binky that night then fell asleep. Maybe he just was not interested when I tried to give it him. I guess I will never know if it was a true neuro sign or just a baby not interested. Maybe a stomach ache. He is back to his self now.