New news

New pictures will be available soon. I have some really cute ones. What do I start with first, the good news or the bad news? I guess I will start with the bad news then the good news. Abraham was diagnosed with cerebral palsy. The neurologist based the diagnosis on the MRI that he had in August, his motor development, he is behind his peers at his adjusted/corrected age of 6 months, and the history of brain insult. Amazingly I did not cry until I was driving to the ferry to go back home. Glenn had duty (works all day and all night, for those non-military types) so he received the news by a text message then a phone conversation. I was told all a long that there was a strong possibly of CP. If you don?t know what CP is please see this website: http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm. We don?t know what degree he will be affected since there is a wide range. One of the clerks at Childrens has CP however she is smart, walks without any assistance devices and speaks and hears well. She has worked there for over 24 years and is very helpful to us. She always remembers us when we are there and says hi. Abe?s CP might not be as mild but the good news: HE IS NOT GOING TO BE A VEGETABLE! He moves all of his extremities still however he is stronger on the left side. His head and trunk control has improved and if the speech therapist approves it he will be moving on to solids. He smiles socially and loves to play with toys that make noise. He tracks with his eyes however not a well as his peers. He might need glasses. He sees eye doctor in November. He says, ?Mama, mama, mama?. I try to get it on video but it is difficult to get the voice and he in the picture. Glenn got me a microphone for the computer. Maybe I could just record it and post it somehow. We got the microphone so that we could record ourselves reading to him while we do the dishes or clean. He seems to enjoy noise. Nutrition: he is gaining weight without feeding tube, however he has good days and bad days so we might have to use it again, he was 15 pounds 7 oz. the GI doctor is suggesting adding a carbohydrate substance to the breast milk for increased calories and has ordered an upper GI series to rule out structural abnormalities that might contribute to the GERD. He has projectile reflux once a day. Respiratory: still on oxygen, we see occasional low oxygen however we are trying to see how he does without it. He sees pulmonary next month. We are hoping to lose all the medical equipment. Some advice I have for parents out there, never take your child no matter his/her age for granted because you never know what might happen at any time. There are babies still in the hospital that were there when Abe was there. I think his former NICU room mate is still on the medical unit. I have not seen him or his mother since August. I am going to check on her next time we go however with the flu season here I don?t think it would be a good idea to take Abe to the unit where children are on ventilators. He is around other children at church and MOPS. Some never have been home; some went home for a little while then were re-admitted. I also met some families that have a ?normal kid? that are diagnosed with cancer or other chronic illnesses. It changes your life however I think I can handle a child with CP. I don?t know if I would have the patience to deal with autism however. So God gave me what I could handle. The road won?t be easy but it is what it is. I can?t put him back inside and make him perfect in the worlds? eyes. He is perfect in God?s eyes. On a different note: Glenn might be going to another state for school for 3 months then will be deployed for 1 year. This makes me a little nervous since someone tried to break in to the house last week while we were at the doctor?s office. The front door lock was broken but nothing other than a small package of medical supplies that we never received was taken. For those concerned about the flu, a friend sent me this on face book: Dr. Vinay Goyal is an MBBS,DRM,DNB (Intensivist and Thyroid specialist) having clinical experience of over 20 years. He has worked in institutions like Hinduja Hospital , Bombay Hospital , Saifee Hospital , Tata Memorial etc.. Presently, he is heading our Nuclear Medicine Department and Thyroid clinic at Riddhivinayak Cardiac and Critical Centre, Malad (W).

The following message given by him, I feel makes a lot of sense and is important for all to know.

The only portals of entry are the nostrils and mouth/throat. In a global epidemic of this nature, it's almost impossible to avoid coming into contact with H1N1 in spite of all precautions. Contact with H1N1 is not so much of a problem as proliferation is.

While you are still healthy and not showing any symptoms of H1N1 infection, in order to prevent proliferation, aggravation of symptoms and development of secondary infections, some very simple steps, not fully highlighted in most official communications, can be practiced (instead of focusing on how to stock N95 or Tamiflu):

1. Frequent hand-washing (well highlighted in all official communications).

2. "Hands-off-the-face" approach. Resist all temptations to touch any part of face (unless you want to eat, bathe or slap).

3. *Gargle twice a day with warm salt water (use Listerine if you don't trust salt). *H1N1 takes 2-3 days after initial infection in the throat/ nasal cavity to proliferate and show characteristic symptoms. Simple gargling prevents proliferation. In a way, gargling with salt water has the same effect on a healthy individual that Tamiflu has on an infected one. Don't underestimate this simple, inexpensive and powerful preventative method.

4. Similar to 3 above, *clean your nostrils at least once every day with warm salt water. *Not everybody may be good at Jala Neti or Sutra Neti (very good Yoga asanas to clean nasal cavities), but *blowing the nose hard once a day and swabbing both nostrils with cotton buds dipped in warm salt water is very effective in bringing down viral population.*


5. *Boost your natural immunity with foods that are rich in Vitamin C (Amla and other citrus fruits). *If you have to supplement with Vitamin C tablets, make sure that it also has Zinc to boost absorption.

6. *Drink as much of warm liquids (tea, coffee, etc) as you can. *Drinking warm liquids has the same effect as gargling, but in the reverse direction. They wash off proliferating viruses from the throat into the stomach where they cannot survive, proliferate or do any harm.



Stay healthy all...

10/11/09 (2nd attempt, first one did not save)

Abe gained 1 pound in 2 weeks. He is 14 pounds 12 oz now. He reached a point where he wanted to eat without use of the appetite stimulate so I discontinued it. Also he was not really using the feeding tube. Wednesday night when it came out I left it out. He is wanting to eat 7 or more times daily. Plan to call his on Tuesday to confirm decision. She is a great doctor. She verbalized that the parents know what is best for their child(ren). He has CT scan this week and sees neurosurgeon. Please pray that the CT scan shows improvement that will amaze the neurosurgeon and the resident or fellow that is working with him. (If this is God's will). We think he had a virus that caused him to have decreased appetite, ect. We are trying to normalize our life by going to a MOPS (mother's of preschoolers group), Tuesday morning Bible study, monthly lactation lunches, Saturday night church, Sunday school class, WII fit plus (did Yoga the other day and I am still sore) and playing games with friends. Abe is smiling more and more aware of his surroundings. His GERD is causing him problems. Dad fed him, laid him in his bed, then dad fell asleep. Not even 5 mins laters Abe desated (low oxygen), was coughing then crying so I restarted him back on his prevacid. We tried Zantac however it taste bad. Please also pray for breast milk production. I am still pumping, 8 1/2 months now, and my supply has gone way down. I am using some of the frozen, more room for food in deep freezer. I want to keep him on breast milk to protect him during cold/flu season. I read that Yoga can increase milk supply by increasing circulation to the milk ducts. The day after I did Yoga my supply did increase. However I don't think Yoga is the only reason for that. I am also learning to make the transition from professional, working women to stay at home wife and mom. I have learned some useful steps now I just need to put them into action. Before grad school I worked 6 jobs to pay off debt. My condo was a mess but I was able to move to WA, get a masters degree in nursing, make new friends and get my MRS. degree too. I should get back to dinner, already messed up the spaghetti noddles once tonight.

Is it time to Eat?

Abraham is doing better. He still has the NG tube in however has only required 1 to 2 feeds that way. also he seems to have ab appetite without the use of the Periactin. he is still spitting up however less than last week. He is constantly wanting to eat and is taking less time to eat. Thanks for the prayers. He appeared to have a virus and is better now. I am nervous with the RSV season coming but he will get immunized to protect from this. This vaccination is reserved for premature babies or infants with chronic conditions like heart problems. RSV is basically a cold. A baby could be hospitalized for this because babies are not able to cough up the thick mucus. I had this my first year working at Phoenix Children's as a nurses aide. i was super sick but did not require what an infant would. I floated to all the units then and in the winter I spent most of my time on the RSV unit. abe covered his face with a blanket this morning since we got up early for Bible study. I will have Glenn post it later. it is very cute

Quality of Life

Abraham saw Gi doctor on Friday. The doctor felt that he is well nourished and if he gets too many fat rolls on him then that is not healthy either. His recommendation was to keep NG tube in until after winter months due to RSV season. Also to give Periactin twice daily and encourage oral feeds. Abraham has had a runny nose and cough. Is he not wanting to eat because he does not feel good or because the more mature portions of the brain would be taking over such as suck/swallow, ect at this point in time. If he gets to a point where he needs a G-tube (surgically implanted tube that feeds directly into the stomach) and is a complete vegetable I question why would keep going. He is responsive to sound/touch and is interactive at times however will this also become just a memory. If he won't have any quality of life then I question why spend all the energy and effort for him to stay here on earth. At least in heaven he would his quality of life would be much better. We are not at this point yet however in May 2010 we will have a better idea.May 2010 will be when he will be 12 months corrected age, 15 months actual. No medical professional is pushing us this way as they "see many kids with G-tubes" "many kids/people with different qualities of life". It becomes the normal when you work in that environment however in the community this is not the normal. I have meet former premature babies that walk, talk and play and have a good quality of life. If my son is dependent on diapers and artificial force feeding and not interactive with his world for the rest of his life, which might be 80 plus years, then why continue with all the procedures and interventions. We are not at this point yet however there is potential that we will be faced with such a decision.

Update on eating

Abe is still not eating very much. He lost a little bit of weight however the xray to check the shunt only showed a belly full of gas. It is difficult to determine with him if this is neurological sign: shunt failure or a virus. I noticed a runny nose, sneezing, foul smelling gas and stool. He was very fussy during home visit with OT so she had to leave. he is better now. I think it is a virus because he wants to be held or in his bed. He feels warm but I don't show evidence of a fever. I know that fevers don't also occur. His doctor is going to call me today. She called the neurologist at Children's to discuss her findings from the exam yestersday. I really don't want to add formula in if it is something that will pass. If he is not eating well I don't see how adding this to the mix will make a difference

Still not eating

In the last 12 hours he has not even finished one 4 oz bottle. He did breast feed at midnight however I don't think he got that much. He sees his doctor today at 1:45. I have been trying to figure out why he won't eat: is it infection, shunt failure or that he has reached an age where a different, higher functioning, portion of the brain would be responsible for hunger messages to be sent. What if he is tube feeding dependent. I question the quality of life if he will always require to be artificially feed for the rest of his life. He is responsive however is not meeting mile stones that other babies his corrected age, 4 months, are. I am also questioning why me, billions of women get pregnant, have healthy babies without any complications. Why were we selected to put through this? About a month ago I heard on the news that a 2 month old baby was found dead a few miles from the home. The mother was in jail. That child was not even given a chance. I am trying to live a normal life, clean the house, go to church, attend social functions, it just is difficult to go any where if he is not eating. I took some friends to the airport early today and would have been able to make it the women's bible study however I chose to stay home since he will eat better with limited distractions. I could not even get him to finish the bottle. What else can I do? I can't force him to eat if he won't (unless the NG tube goes back in). I am going to try to feed him again since he is waking up again.

Nutrition

abe is not wanting to eat. i am not sure what is going on. he might be getting a tooth in. if he lost weight or did not gain then formula will be added and a medication to stimulate his appetite. i really dont want either. i have stressed myself out trying to get him to eat. i am so tired of pumping.some women r lucky enough to only have to pump a few times. i have been pumping 5 to 8 times daily for over 7 months. it makes it difficult to have a normal life. going to church some times is even overwhelming. i would stop but it is the best thing for him and i have fought tooth and nail for him to be only on breast milk. majorioty of NICU mothers stop pumping/ breastfeeding long before now. please pray that abe will continue to grow and thrive on the breast milk and that i will have the endurance to keep pumping or trying to get him to breastfeed. he is refusing to eat either by bottle or nursing. neurosurgery did not feel this was a shunt failure sign. increased intracranial pressure can cause poor oral intake. he is other wise happy with some periods of fussiness. i am typing this from my phone so it may be poorly written also it is very late.

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.

Surgical Update

I called the surgical scheduler today and she said to call back on Monday. This is causing some stress. I don't want to find out Monday that his pre-0p appointment is Tuesday morning and surgery Wednesday. Since they deal with all the time I don't understand why they could not set it up yesterday when we there. We were there for several hours. On a positive note at least this time around we can prepare. When I went into preterm labor I had no idea that Abraham would be born and we would deal with hospital life for 3 1/2 months. The scheduler told me 2 night stay. This is different than what the doctor told me. Please pray for no complications or developmental set back. He has came a long way but we still have an uphill battle to fight. He has came a long way Also the hospital has AC so during hot weather would be a good time. I really, really, really don't want him to have the surgery at all however I have no choice. Eventually it could be life threatening to not have it. Right now his fontanels, soft spots, are open so this allows for increased volume of cerebral spinal fluid. The neurosurgeon that said that if any adult had the size ventricles Abe has that he or she would be in a coma. We are not bringing Abe to church this week or for a while after surgery. I don't want to risk infection especially since one incision will be directly into the brain and one in the abdomen. Just when we start becoming more social and feel somewhat normalized he needs this procedure. We finally were able to schedule with the GI clinic after a month of calling and being told "we don't have any clinical or a referral". I got a letter from Tricare with authorization June 25th. Thankfully a Tricare case manger and the Naval peds clinic discovered that the referral got lost in the documentation. The earliest appt is August 28th. I am concerned that they will refer for surgery for a G-tube placement. I really don't want him to have this. I am starting to question his quality of life now. Right now he is responsive to outside stimuli however will this remain or will he become a "vegetable" and have no quality of life.

7/30/09

Well Abe had the CT scan today. His ventricles in his brain have increased in size and unfortunately the neurosurgeon would like to put in a VP shunt (drain that goes from his brain to his abdomen) next week. I am not sure about the day yet. The neurology nurse practitioner said that neurosurgery does their surgeries on Thursdays and Fridays. We would have to come for a pre-op appointment then surgery the next day. I am hoping they can set up something for us to stay over night near the hospital, such as Fisher House or Ronald McDonald. I assume that they would want him here early the next day. I am very disappointed because VP shunts are a lifelong thing to manage. It is internal however it limits certain activities, there is risk of infection and malfunction which would be an emergency. I just really want to be done with all of this. Why can't I just have a normal child where reaction to immunizations or a cold are my biggest concerns rather than will he ever fully eat like a normal child or walk. The EEG was abnormal as well; A seizure disorder was not diagnosed because the test is "normal for a child with the extent of brain injury that he has and being premature". He will not be started on seizure medications at this time. The VP shunt placement can cause seizures however not having one placed could cause further damage to the brain and no progression of development. I see all these mothers carry there babies around in just a carrier without all the gear or fears that have. I am not too Kean on him being intubated for major surgery. Will this set him back developmentally with his oral feedings and potential oxygen wean? I also question will he make it out of surgery or will God finally decide that his poor soul has served it's purpose and does not want him tortured him any longer. I don't know. He has been a blessing, his beautiful eyes, his dimples and the way he crawls on Glenn when he holds him. I hope he will come out of surgery okay however God knows what the outcome will be. Other children have under gone much riskier surgeries okay. Just when progress is being made this could potentially cause a back slide in everything since hospitalized children tend to regress a little developmentally. Sort of like an adult who does not feel well. We don't feel too good after surgery and it takes a while to fully function in our daily activities. For an infant that would be eating and learning to roll over, lift head, ect. I am waiting for traffic and the heat to calm down. For those of you outside of WA, I heard it was over 100 degrees here. I am sure those in AZ are like so, what it is not a dry heat and most people don't have AC. I figured we would leave when the sun starts to set however that makes for more than a 12 day away from home. We do have two room AC however it's not the same as central AC. We will keep you posted. Please pray that Abe will fly Thur this surgery without problems or set backs, that Glenn and I can cope with it. Glenn has been very busy at work so the timing on this is not great however the surgeon does not want to postpone. I hear that the neurosurgeons don't just do surgery to do it they really weigh benefits and risks especially in young infants. He said that he prefers not to do it however it is medically necessary at this point. The neurologist wants an MRI too. Abe is getting upset, gotta go

7/22/09

Abe's eyes are now mature. His ROP did not progress beyond stage 2 (good) however his eyes do deviate to the side. This might require surgical intervention down the road. His next appt is in November. He tracks intermittently with his eyes. The eye doctor recommended yellow toys and a light. I am using my otoscope as a light and I got a baby Einstein yellow duck. She did not recommend anything with too much color since the goal is to master fine focus and not be focusing on too much at one time. This is difficult since most baby toys have lots of color. He is 12 pounds 14 oz and 62 cm. He is taking more by breastfeeding or bottle and less by tube feeding. However his reflux is significant. I have cut caffeine out of my diet on some days however Mc Donald's has awesome sweet tea for a dollar that is hard to resist; especially on hot and sunny days. His height measurement tends to be all over the place so I question it. I read that eliminating dairy, caffeine and citrus out of the mother's diet can help a breastfed baby with reflux (GERD). I am starting with caffeine however there are so many foods that are considered "dairy" that I eat. Also calcium and vitamin D are important in prevention of osteoporosis. He was started on Prevacid 15 mg solu-tab a week ago however I have not seen much improvement so now he is also on Zantac in the evening. I would prefer that he does not need medication for GERD. I know when I was pregnant I had acid reflux and it is pretty miserable and would have to take medication for it occasionally. If this means he can stop the tube feeding that I will continue the medication. He has shown some improvement over the last day. I was very concerned about him tolerating the amount of his feeding. He is supposed to get 3 oz plus 2 cc (92 cc) every 3 hours day and night. Does anyone know of any natural ways to help babies with reflux? We have a wedge (up right position for him), I try to hold him upright while feeding and minimize movement after he eats. I am not sure what else to do. Sometimes he is fine until I put him in his wedge, when I need to pump, and he starts coughing then spits up everywhere. His sodium bicarbonate level was 26 yesterday (good). This means that his lungs are worker better and that he is not in a chronic state of respiratory acidosis (lungs not functioning properly enough to have proper exchange of oxygen and carbon dioxide). He is having an EGG tomorrow morning as part of the work up for seizure disorders. The exam in scheduled for 8:30AM. It will take 1 hour and he needs to be asleep. This might be difficult since he is use to eating at 9AM however it was the only appointment available. Please pray that he is calm or that the test does not show any evidence of a seizure disorder. Also pray that his CT scan next week does not show increased intracranial pressure or need for a VP shunt. His next appointment with pulmonary doctor is in August; please pray for oxygen wean. It will be so much easier to go places with him without the oxygen and monitor. We did go to a breastfeeding moms meeting today. It was nice to get out of the house. It was also reassuring to know that other moms have had difficulties with breastfeeding. I was concerned that I would be the only one who has to pump and use a bottle. I was the only one who had a baby with a tube feeding though. I learned some information and provided some too. I tried a Moby wrap at the meeting. This is awesome and I would recommend to all mothers especially premature babies. Provides good head support, comfortable for the mother and is recommended for premature babies. I just need to order one now. abe is hungry, gotta go.

July 11th

Abe is 12 pounds 5 oz and 26 inches long. I question the length since this would be a significant jump for him. However he appears to be growing quickly. He is Hugh compared to when he was born. Also my left elbow is hurting from holding him all the time for meals. I might have to make a doctor's appointment. I think I have tendinitis. However the medication they would probably prescribe for this might make me drowsy. I told Motrin the other day and it did make me very drowsy. His doctor is concerned about the significant increase in his head size however on the growth chart everything is straight up rather than following the normal growth curve. Therefore it is questionable if this is healthy normal growth or something to be concerned about. I had typed a long summary of what is currently going on and my computer exit out before posting. So now I will do the quicker version while he is still sleeping. He is off affine, hopefully will not need it again. Caffeine is given for apnea. He still has occasional low oxygen "desats" as low as 85% if the nasal cannula is not in his nose. He still needs the oxygen, monitor while sleeping and tube feedings. I really want to be done with all of it. He is taking more oral feeds, bottle or breastfeeding. However he is content when he takes 40cc and he is supposed to take 88 cc every 3 hours day and night. During the day I don't use the tube feeding unless absolutely necessary. Over the last week he has required the 3am tube feeding and occasionally the midnight, 6AM or 9AM. All the other feeds have been orally. I asked about discontinuing the 3am feed however his doctor is concerned about his reflux. Until he can tolerate increased volume he will continue to need the NG tube and 3AM feed. I am hoping that next month his lungs will be mature enough that he no longer needs the oxygen. He has an eye examination this week. Please pray that the ROP has not progressed and that his eyes are mature. Also pray that his reflux is less. I am wondering if his reflux is attributed to the immaturity of his esophagus, the NG tube and something in my diet that is transferred in breast milk. He pulled out this NG on Friday night and I left it out until 3:30PM on Saturday. I was going to leave it out however I worried about him not getting enough to eat and getting dehydrated. It was so hot on Saturday, his diapers were not as wet as usual and his lips were a little dry. Also his doctor wants the NG tube to remain until the reflux is less. I read in my peds book that 6 French NG tubes were not found to contribute to reflux in some studies. His reflux was less when the tube was out. We are transiting him to taking his medications orally since the new reflux medication is not compatible with NG tubes. This will be difficult since it does not dissolve that great and we can't mixed in a large amount of water. He is on 3 meds: thyroid, reflux and multiple vitamin. His doctor wants to continue with the iron because he did not get all iron stores that he would have received if he was full term. AAP (American Academy of Pediatrics) recommends that all breast feed babies get vitamin D too. So he will have to continue on his. Developmentally: he has increased head control, puts his hands in his mouth and is starting to focus more. He moves his left side more than the right side. I think he might have right sided weakness and will need glasses at a early age. he wants to eat now.

Pulmonary news

We saw the pulmonary doctor at Children's a few days ago. She was very sweet. It's always nice to have a good person working with you and your child. However I am beginning to feel that we have too many people working with us. Pulmonary, GI, endocrinology, neuro surgery, neurodevelopment at Children's and at home, OT/PT, lactation, dietitians, neurology and a pediatrician. I guess at least he does not need urology and cardiology. As he gets better and older I am hoping that the number of specialist decreases. Oh well at least we have health insurance so that he is provided the necessary care. I have had some problems getting his medication for GERD, reflux. It has been a huge hassle however I have one contact person at the Naval Hospital Pharmacy to contact about this issue now. It has to be compounded because his NG tube is a 6 french. In order to use the tablets he needs an 8 French NG tube. The pulmonary doctor thinks that he will outgrow the need for an NG tube and will never need the bigger size. He is taking a lot more by breast or bottle however his carbon dioxide level was high. The body exchanges oxygen and carbon dioxide. This is due to his chronic lung disease. Premature babies develop scar tissue in their lungs which makes breathing more difficult. We are cutting his caffeine dose 1/2 for one week then discontinuing it. Yeah one less medication to worry about. Also if he is awake and with us he can be disconnected from the monitor. In fact most parents don't keep their kids connected all the time. I did because I thought the the information could be downloaded and I wanted to show compliance. I think the equipment limits him developmentally any ways. Yesterday we met with lactation consultant and for some reason I became very emotional. I think it's because her office a few doors down from where I was triage the night I delivered. Maybe some post traumatic stress situation. Apparently she is usually called in for difficult or premature deliveries. She was not called in for my delivery and as a result all the staff now know to call her in. Oh well that can not be changed now however another premature baby could be spared the severe brain bleeding that resulted from the difficult intubation. His oxygen tank ran out and his monitor was alarming, indication that he definitely still requires oxygen. I could not find my car , went to both parking garages and was very stressed. I finally got to the car and when I switched out the oxygen tanks something was wrong with the regulator. I finally went to the ER for assistance. His color was good majority of the time however at one point he was a little gray. It felt like an idiot because I put the regulator on backwards, however I saw a baby who needed oxygen so I quickly was trying to get the equipment ready for him. Several people offered to help me however I was too over whelmed to even know how they could help me. The ER staff determined that the regulator had a leak however it was safe for me to drive home. They replaced the rubber stopper. I am a nurse so I should know how to handle this however in the hospital it's automatic. You just turn the oxygen on. During this time I was already upset with the mention of a G-tube, surgically implanted tube that delivers milk to his stomach. I don't want this. I know the NG tube contributes to his reflux and the G-tube would minimize this risk however there are other risks involved: infection, breathing difficulties from the general anesthesia and scaring if it ever removed. The mention of this made me feel like my child would be tube feeding dependent. I am determined to get him off the tube feeding. We went the whole weekend with only breast or bottle feeding. However when he was sleeping at 3AM Monday morning I decided that he works very hard to take almost 3 oz so I will give him a break. Sometimes it takes him over 1 hour to drink 3 oz. His breathing becomes labored and he gets tired. However we are working on this. Over the last couple of days he seems to struggle less with oral feeds and to be interested. The doctors expect a weight gain of 1/2 pound to 1 pound per week. Wow I might not be able to use the size 1 diapers. It has been revealed to me that God does work. One day after our first outpatient appointments the receptionist at Children's said "lady with the pony tail", (that's me, have not had my hair cut in a year now) I can help you. We got to talking and I shed a few tears. She was a premature baby herself, born 8 weeks about 50 years ago. Her mother slipped on the ice in January then went into labor. She has cerebral palsy however it's barely noticeable. She does walk a little different and has some weakness however she has worked at Children's for 24 years, her speech and vision are fine and she is a smart lady. She is also very kind and thoughtful. She found me when we came back another day and gave me a card. One word of advice she gave me is "my mother always treated me like a regular child". I find this difficult to do when he is hooked up to different pieces of equipment however every day I see more and more normal baby behavior. I am not sure if he can see but he definitely can hear. He needs to eat now. Seems like that is how we spend our time. I envy the mothers and babies who don't have this struggle.

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.