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.

Our chunky baby

Abe is 11 pounds 4 oz now. His doctor commented on his double chin. He seems to be doing better than last week. We are still not sure what caused him to be unresponsive. His doctor thinks it might have been a seizure or related to excessive crying. Some kids cry so much and so hard that they pass out. She has seen this in 6 month olds. He is being referred to GI doctor (tube feeding and GERD management) and neurology (seizure work up). He is taking more by breastfeeding and bottle however he tends to spit up excessive amounts of milk after either. My milk production has slowed down, I think it's related to stress, lack of sleep and not having an opportunity to pump as much. when he was in the hospital the nurses could care for him while I pumped, now it's Glenn or me. When I asked his doctor yesterday, "should I do all bottles to get him off the tube feeding?" Her response was "no" he needs to continue to breastfeed as much as possible so that he can learn. I am so thankful that his doctor supports this. I also learned that there is a lactation consultant at Naval Hospital that is willing to assist us with breastfeeding. The therapy programs will only assist with bottle feeding infants. We met her briefly however Abe was sleeping after being poked 3 times for a blood work and then another 4 for immunizations. It might have been better to do blood work one day and immunizations another day. She set up an appointment with us for Friday. She is very nice and a former NICU nurse so she is use to dealing like Abe. The doctor cleared Abe to go to church however we ask that due to the risk of infection that people don't touch him. I know it's so tempting to touch an adorable baby however we would like him to be a little stronger. We might only go to bible school to see how he does in public. He seems to be affected by loud noises so the main church might be too much for him at this time.

Need Prayer ASAP

Abe saw neurosurgeon today. CT scan of his brain showed enlarged ventricles (not a new finding for him) which is found with hydrocephalus. He is trying to do a wait and see in on the decision to place a permanent VP shunt. Abe has been taking more oral feeds either breast feeding or bottle. Sometimes his whole amount so we can skip the tube feeding. However tonight he was awake from 2:45PM until 7:10 happy playful and even smiling. Then he took his whole 82 cc by bottle, vomited pretty much the whole amount so I bathed him. After his bath he became unresponsive. I debated if I should call 911 instead I called Glenn who was downstairs to come and let me know what him thinks. I had him off the oxygen and monitor while bathing. (oxygen was on for some of the bath). I thought his color looked a little gray, Glenn thought a little pale. His oxygen monitor showed 83-88%. I put his oxygen back on him and he still was only a little responsive even with the oxygen monitor showing 90-96%. I blew in his face and his eyes twitched a little but not as much as usual. He became himself again, crying and responsive. I called the peds on call doctor. She suggested that he goes to ER. The ER doctor felt comfortable to discharge him back home. He is fine now however we are not sure of the exact cause of this. Was it a seizure, apenic spell, fluid aspiration from the bottle feed or water from the bath or a side of effect of the Tamiflu. Tamiflu is not recommended for infants under the age of 1. He has been on this twice. Thankfully it was his last dose. He seemed to do better on it last time. However I am also on it and I am sure some of the dose is in the breast milk. I am nervous to go to sleep tonight however I have been up since 4:30AM so I know I need to sleep. Pray that he will continue to be fine, that if it was a seizure that he won't have another one and that no further brain damage occurred as a result and that all of us can get some sleep. Right now he is happy with his binky and monitor indicates 97% on his oxygen saturations (good).

June 11, 2009

Abe and I went to Seattle yesterday. We were gone for over 12 hours however all the providers allowed us to keep our appointments even with household flu exposure. It was very stressful managing all the equipment and getting the ferry. Next week we have to get the 0620 AM ferry. I did not know the whole outpatient process. You have to draw a number to even check in for appointments so we were a few minutes late despite arriving a whole hour before. I took my time, pumped in the car, talked to another NICU mom and had breakfast. Next time I will know to check in right away or at least draw a number. Glenn does not have the results of which flu he has. The flu makes you feel awful however please keep in mind that healthy adults are much more likely to recover and not have any complications. On the other hand if Abe got the flu he would be more likely to require being hospitalized or have complications. Those at greatest risk would for complications would be the very young/old, chronic health conditions such as heart problems, asthma, ect. For those people who have been around us please see the CDC (Center for Disease Control) website for more information. Not everything you read on-line is accurate however I trust the CDC website. Eye doctor: no change in eye exam. Abe was screaming when she was trying to talk to me so I don't completely understand the results. I told the nurse this so she is going to mail me a copy of the notes. OT: impressed that he is able to breast feed (she indicated that she did not think he would be able to). He took 10 cc from the breast and 30 from the bottle during the appointment. She advised pre/post breast feeding weights but questioned the accuracy of the scale we have at home. She also advised to try oral feeding bottle/breast for day time feedings, alternating between both. She felt that he is only going to come off the tube feeding if we show how much he takes with a bottle. The neurodevelopmental nurse practitioner was very sweet. Her only concern about his development: holds head to side instead of centered otherwise she felt that he acting like his adjusted age of 1 1/2 months. Dietitian wants to increase his tube feedings by 2 cc every week. Social worker: gave us information on resources. Abe went to the peds clinic at the Naval Hospital today. We finally met his primary care doctor. She is very sweet. His weight is 10 pounds 12 oz and he is 22.5 inches long. I was not impressed with one of the coreman when he was getting the flu screening. She asked me "does have any symptoms?" "No" then "he does not qualify for this". I explained the 14 weeks early and chronic lung disease and home exposure. During the process she questioned the RN's technique right in front of me. The nurse finally told her "I don't' need any more comments and I am sure the mother does not either". She also stuck her bare finger in his mouth. I promptly said let me do that. When she walked me to the breast feeding room I told her that it's not recommended to stick your bare fingers in other people's baby's mouth. She told me "I had just washed my hands". I did not say this but was thinking this "I don't care if you washed your hands in bleach, your fingers are not going in my kid's mouth". I don't even like my fingers in his mouth. They don't really even like him coming to the clinic because of the risk of infection why would I welcome germs from someone else directly in his mouth. I was going to report this on my way out however they were in a meeting. Please pray for us. Pray that we don't get the flu and pray that I will be a good mother. well I need to start his feed and take a nap.

The Flu Strikes Back

I have two home patients rather than just one. Glenn tested positive for the flu. We just don't know which strain yet. He will be living downstairs for the next 5 days. I don't think he is complaining too much. The TV and Wii are there. However it will be rough taking Abraham to Seattle for appointments, with all the equipment in the morning alone. Abraham is sneezing and has a runny nose. It was so difficult explaining everything to the peds nurse over the phone. The first explanation I got was "if the baby is not sick then there is nothing we can do". He is a bit more complex than the average 4 month old. I explained to her that he was born 14 weeks early, is on oxygen and has chronic lung disease. I was thankful when she suggested giving the message directly to the doctor. The pediatrician called me back and is recommending that we are all treated with Tamiflu. I don't have any symptoms and my immune system is pretty tough, probably from all the years I was a school nurse. In fact I have not had a cold since April 2007. The neurodevelopment clinic cancelled his appointments because of the flu exposure. He won’t be seen until July 21st now. The eye doctor and OT still want him to come. If he needs eye surgery it will have to be done before he is 52 weeks gestation so that appointment can not be postponed. Abe is over 10 pounds now and has been breast/bottle feeding in between tube feedings. He does not do so well with the bottle. It pours out too quickly for him. I have been tracking the information for the OT. They increased the amount he gets in the tube feed by 5 cc so now he gets 80 cc every 3 hours. We still have not had any home therapy. I need to call them to see what the hold up is. Please pray that his eyes have improved, that Glenn will feel better and that Abe and I won't get the flu too.

Get this feeding tube out

I have been trying to get him to breast fed. He shows signs, rooting reflex, that he wants to nurse. During the 8PM hour yesterday night he nursed twice. I did a pre/post weigh on him, pre was 9 pounds 15 oz and post 10.01. His weight on Monday with no clothes or diaper was 9 lbs 5 oz. I am trying to figure out if fluid ounces are the same a solid ounces. Glenn weighed a container of breast milk and an empty container and it showed that 1 ounce of milk equals an ounce. However I don't think he took in 3 oz in 6 minutes especially since it was not continuous for 6 minutes. The doctors prefer that he takes the tube feeding or bottle; probably because this can be measured exactly. I tried to give him the full 75 cc (2 and 1/2 oz) with the Dr. Brown natural flow bottle and he took 40 only to spit most of it up due to a burp that was stuck. He did not seem too happy with the bottle. In fact when I put him up to my shoulder to burp him he was trying to latch on it my shoulder. I have a referral to see the occupational/physical therapist/lactation consultant at Children's however that's a long ways to go. She worked with him since March so it might be worth it for her to see his progress and give suggestions. We are waiting for the home assistance with the Holly Ridge program. So far we get just home medical equipment and a phone nutritional assistance. The Navy/Marine Core nurse is coming in the morning however she is there to weigh him and probably basic newborn/baby care. The service is free and she won't be managing the tube feed or oxygen . She is a retired RN. It might be helpful it may not be. Either way it saves us a trip to the doctor for a weekly weight. Option Care did provide a baby scale for home use. Insurance does not cover the cost of the rental however Option Care indicated that they want bill for renting it. I thought we were going to get some home nursing from Option Care. I guess not, maybe because I am a nurse myself. The second time I had to replace the feeding tube in the home I cried. I did the Wii fit and was so disappointed to see my weight 2 pounds heavier than the day I delivered. I think this week it will be less because I don't get too much time to eat. Since we cancelled the remodel Glenn installed cabinets with counter top, trash compactor and a new screen door. We decided not to get the diaper genie because the trash compacter works great and will serve a dual purpose once he is out of diapers. I found a Bumbo chair on Craigs list for $25. Wow this chair is way over priced. It's $37.00 at Target. Most babies don't use it for very long however Abe will probably need one longer. I was going to buy a "Pump in Style" breast pump however Katie M. pointed out that this is for single users only. I found that the FDA does not approve this pump for multiple users, even with your tubing and other equipment because it is an open verses closed system. I cancelled the purchase. The hospital ones are closed systems. Looks like he has the "Goddard" chin. We all need some sleep.