Pray

Pray for Abe. He is still inpatient in Phoenix and it is horrible. Staff does not believe me when I tell them his oxygen level is low. How would they know it only alarms in the room and not outside. I think today I will keep the door open even though he has the flu and I have symptoms too. He is still vomiting,has foul smelling diarrhea which I hope is not C-diff and has lost 2lbs. Pulmonary talked like we would go home Friday. Seems like they tthink we are here because we want to be. We are supposed to be in San Diego. Which place would you rather be, a hospital or Sea World, the zoo, Cheese Cake Factory. We did not come all this way to be stuck in a hospital that barely has any hand gel. I guess Children's in Seattle has the title "World Class" for a reason. Based on our experience now we could never move to Arizona. Some nurses have a knack to work with kids and some would be better equipped to work with prision immates. Thankfully everyone has a different personality to care for patients. I wanted Abe to have Labuterol due to desats and cough but they would not give it to him because he sounded clear. They did not see or hear the desats to 86% on room air nor hear the coughing afterwards. Parents know their child better than any other person ever will. I will discuss with pulmonary today. If we were at home and his monitor kept alarming off and position changes would only help temporary and he started coughing I would give the Albuterol inhaler. Why the heck won't they give it here??? There is a doctor's order for it. One thing I don't like about admissions is I have no control over medications. Next time I think my kid needs Albuterol and it is refused to us, even with a doctor's order I am asking to speak to charge nurse. Please pray our next nurse has more patience to listen to a mom of a complex kid who also has been an RN for 11 years including peds nurse and has worked in health care since 1992.

7th admission-

Bummer that is all I can say. Abe has been vomiting, irritable and had a fever so we brought him to Phoenix Children's Hospital on Wednesday night. This hospital is way different than Seattle. He is still vomiting, treated with IV antibiotics for ear infection. they are also looking at his VP shunt, potential VP shunt failure or infection. I am waiting for the results of the abdominal ultrasound to see if a cyst has developed at the tip of the shunt. I really want the neurosurgeon here to get in touch with neurosurgery in Seattle since I trust them and they know my kid and his complexity. I will make sure to get a copy of ct films before I ever leave town again. Might have to cancel San Diego trip. I need to get back to Abe's room so I can talk to neurosurgeon. He is currently sleeping in his swing but was refusing to eat ice cream, yes my kid was refusing ice cream so you know something seriously is wrong. Pray for him and for me. The nurses last night were extra quite so we could sleep.

Surgery

Abe's surgery went so well that he got to come home instead of being admitted. We stopped by NICU and medical unit to say hi to the staff we know. The NICU doctor that admitted him at Children's last year was so happy to see him doing so well. He is 20 lbs now and 79cm. I got tearful while talking to him because I remember having a difficult conversation last year if we should stop all care. I thought he was going to be unresponsive and unaware of his environment so I questioned his quality of life. It costs millions of dollars to keep him alive in NICU. He was very professional when we had these conversations last year and advised for us to keep going and see what happens. I am so thankful that we kept going. Abe is responsive to his enviroment and is finally rolling from his back to his belly. His trunk and head control has improved. Abe truely is a blessing. He does have some needs beyond other kids but was given to the right family. A father with job security in the Navy for health insurance, income, bulid him stuff, read to him, rough house play and naptime and a mother with nursing experience to advocate for him with all the medical/surgical interventions .Based on Glenn's emails he really misses his son and loves him. I included in his care package a picture Abe colored in his class (well mommy and the teacher helped). I did not explain what it was I just sent it. Glenn emailed me to ask if Abe colored it. Daddy got his first picture from Abe, how sweet. He will take his first airplane ride soon if he continues to do well and not have any post surgical complications.

18 months old

Just 18 months ago my family faced life and death for our newborn baby, Abraham. It was awhile ago but sometimes it seems like just yesterday. I barely got to look at him from a distance, got to touch him for the first time over 12 hours later and hold him at hospital #3 two weeks after birth. I remember a Madigan doctor calling, stating while getting choked up with tears, “Do you want us to continue life saving techniques; he is fighting to not be with us any longer”. He required more than chest compressions and artificial breathing but also epinephrine a few times. What this means is that his body was oxygen deprived for so long despite artificial breathes and compressions that he needed a strong medication for his body to get the message to circulate blood. So in reality he probably did die during this time. God very well could have taken him to heaven that day. However God choose for him to live. He is stable now however his risk of infection is still very high due to low muscle tone of his core muscles and chronic lung disease or an older name for it BPD (bronchopulmonary dysplasia). Nature designed babies to be born at a certain gestational age for a reason: lungs, heart, brain and everything is fully developed and the human life is ready to handle being in the outside world. Abe’s lungs were not ready to deal with breathing which caused abnormal formation of lung tissue including inflammation and scar tissue. Some might say I am paranoid about him getting sick but it is not an abnormal fear in my book. He has been admitted to the hospital 6 times in a 16 month time frame. NICU for over 96 days, VP shunt surgery last August, H1N1 with pneumonia in November over Thanksgiving, other respiratory infections: February twice (10 days after Glenn left for training and 2 weeks after that discharge) and most recently June 2010. The CDC has some great information on guidelines for preventing the spread of infectious diseases such as the common cold and flu. A cold typically makes someone feel bad but majority are not admitted the hospital for it. Some might say, Oh she has it easy, only one kid and he does not get into things. Reality again he is developmentally delayed. Most 15 month old kids are walking, sitting up and sticking cereal in their mouths. When he is 13 years old and weighs 90 or more lbs he still might be sitting in a chair and his mom and dad will have to lift him out of his booster/car seat into his wheelchair. I did not choose to have a premature baby or one with chronic complex health needs but was rather chosen. Majority of people are not equip to care or advocate for a child like Abe. So I ask that I am not judged for protecting my child from infection, after all his surgery is scheduled in less than 2 weeks and was already rescheduled due to illness and admission. Please pray that he stays healthy enough for surgery and is able to visit Arizona. We already have a wedding reception and a birthday party to attend during our visit.

July 2010

This is the monthly update at the end of the month. Better late than never. Abe's surgery was canceled because he was admitted for a respiratory infection in June. We tried to manage it at home but he was not maintaining his oxygen saturations and was not eating. He spent 5 nights at Children's Hospital. He is doing well now, gained back the weight he lost. He was 19 lbs 12 oz at last week's appoinment. He is also getting so tall. His surgery will be in August. If everything goes smoothly then he will be taking his first airplane trip (he was on a helicopter that the day he was born) to Arizona. We also plan to drive to San Diego from Phoenix to visit our friends there. For safety reasons I am not posting actual dates in this blog. I can personally give you exact dates privately. He started parent/child swimming. The pool is cold but he seems to enjoy being in the water. The goal was to loosen his muscles but he is pretty tight in there due to the temperature. He is exhibiting normal toddler behaviors, he drops his toys and laughs, knocks the spoon out of my hand. He is currently getting his molars in, oh fun. He is eating more solids but still prefers pureed foods. We are working on more advanced foods and textures. He loves Mexican food, beans and rice with melted cheese. He has a new OT through Holly Ridge. He started his little tikes therapy class. He does okay but some times gets over stimulated with the other kids there. The class is weekly at 9am. This is difficult for us because we are both late night people. He has PT weekly, baby story time and OT 3 times per month. He says mom or momma when he needs something. His muscle control is delayed but he is getting stronger. He wants to type on my computer right now. will update after his surgery in August.

June 2010

It has been awhile since I updated here. Again I update with pictures on face book almost daily. Abe had a cold a while back and so did Glenn. Abe did not have to be admitted this time around because he continued to eat and did not require oxygen. The big oxygen tank has been removed from our home, yeah. Glenn and some people from church assisted him in puting down Oak hardwood flooring in the front room. Ideally we wanted to do the entire house, minus the bathrooms but Glenn ran out of time. He deployed with his ship this week. It has been a rough week for some strange reason. Usually deployments don't start out this bad. This is our first one, other than him being gone for 3 months for training, since Abe was born. Maybe it is more difficult because he was gone, came home for 1 month then deployed. That month went so fast. he got a lot done even with the cold. Abe might have a minor cold again and he is scheduled for surgery Monday morning at Children's Hospital. He saw his doctor today and she suggested to keep the surgery scheduled and see how he does over the weekend. He is still waking up at night which is could be the sleep apnea. The sleep study is in November. He is progressing social skills, loves to drop all of his toys, especially the big ones onto the floor to hear the crash. He giggles his head off when he does this too. Pictures were not updated on this because it requires both Glenn and my computer for some reason. Please pray that his surgery goes well. He might go home that day or be admitted. We are not sure. If he is admitted it will probably be just over night. We plan to take it easy next week after his surgery. We have been busy walking, play groups and I started doing more with my Mary Kay. I would love to start scrapbooking again. Just when to find the time???Abe only naps on the go. He will nap at home if I hold him but I gently put him down and he wakes up crying. I pat his belly and he just continues. I walk again and it gets louder. The solution is for me to walk to get exercise and he gets to nap. This does not help the house stay clean. He is getting molars in. He has tooth decay which was very disappointing to hear. I heard this is common for premature babies and babies with a history of reflux. That is it for now I need to continue preparing for Monday's surgery. I will try to update after his surgery.

15 Months old

Abe is 15 months, corrected age 12 months. Wow we really did not know if Abe would make it this far. New pictures will be updated when Glenn returns home next week. I will start head to toe like I tried to do as FNP student. Neurosurgery: VP shunt is fine no current need for new one to be surgically placed right now. He has a haste MRI scheduled for October or November then he will see neurosurgery NP to adjust the VP shunt. His hair is growing well and soon the shunt will not be as noticeable. Eyes: eye doctor at Children’s left a voice mail, they assessed that he sees 20/710 and has cortical vision loss (CVL). This is a result of damage the optic nerve and the brain’s ability to process what he sees; therefore glasses will not help the problem. I personally need to read up on it myself because I don’t remember learning about it in nursing school. He also has stage 2 ROP. He has an eye specialist from the school district coming 2x month to work on vision exercises. I have found it to be beneficial. This teacher, Pam, brought info on on-line free courses that Glenn and I can take to help with visional impairment. I will see if his respite providers can also take the classes free of charge. Also we can order books from the library for the blind. The home therapists never gave us any information about the library or the classes so I am so glad I said “YES” I want my kid to have a vision teacher and was not pressured to decline additional services. He has an eye appt. at Children’s at the end of this month. Ears: he passed the behavioral hearing test however struggled with low tones and favored looking to the right over the left. We are not sure if he has hearing loss for low tones since most babies don’t find low tones as interesting as high pitched tones. We also wonder if he liked the toy on the right over the one on the left. Nose: just growing bigger. Mouth: more teeth, more teeth and all that goes with that. I am concerned about one because it has a yellow appearance. I think he has 6-7 teeth. When Glenn left he had only 2. He passed the swallow study but was mad as mad can be during it. He caught on that barium is not a great thing to drink. Despite having an uncoordinated suck at times due to his fussiness he managed to protect his airway. They did see a delayed swallow but he was so mad during the whole exam. Chest: his lungs are good but he is still at high risk for infection due to developmental delay and lower muscle tone. Option care picked up the big oxygen tank out of own home. He has only required oxygen a few times while sick. We use the oxygen monitor occasionally at night only. He is so much more portable. He still has desaturations of oxygen during the night to 84 % which could be attributed to obstructive sleep apnea. Sleep study scheduled in November. Pulmonary feels this is why he wakes up frequently during the night. GI/Abdomen: He still suffers from GERD and we have found the compounded reflux medication we get at Children’s to work better than sol u tabs. He has an appointment with GI at Children’s to discuss the reflex per Pulmonary’s recommendation. GU: he will be having surgery to bring his testicles into his scrotum June 21st. They are not undescended testicles they are just too high canal. This will be an outpatient surgery unless complications arise or they decide to admit him. Motor: he has hyper muscle tone however I have also heard some professionals say low tone. He keeps his right hand very tight and fisted. He does keep it open occasionally and has a splint to assist with this. He is working with home OT and outpatient PT. He can sit briefly unassisted but he tends to be in the tripod position and is distracted by a toy. He has strong abdominal muscles and was able to bring himself to a sitting position while he was sideways on the boppy pillow on my lap. Development: eating more solids, he is working on different textures including apple puffs and baby teething cookies, but prefers apple sauce consistency. He drops his toys behind his back while looking at me while he laughs. He knows I hate his toys on the floor because I have to wash them. He has finally mastered breastfeeding so momma is not tied to a pump. Wow I have more time now. Amazing I could have switched to formula months ago but choose not to. Still have milk in the deep freezer too. I will probably become a lactation consultant in the future. He was 19 lbs, 2 feet 5 inches last week. Social: Glenn returns home next week briefly before deployment and new hardwood flooring will be installed. I am entering him into the Little Heroes Project. Just need to find a way to sum up his story to enter it. I participate in the Military Special Families Support Group monthly. Last month they had the Navy Secretary and a congressman come to hear family stories about the impact respite care has provided. Due to a time crunch I did not verbally participate but our story was included in a book with family photograph. Last I heard the book was delivered to President Obama. Not sure if he will actually read it but the goal is to get respite care for all military families with special needs children. Currently it is only available only in a few locations. Well Abe is waking up from a nap so guess it is time to go.

April 2010

Abraham is gaining weight and is staying healthy. Has been respiratory infection free for 1 month now. He is teething and just had MMR and Pneumonia vaccination. I was going to wait for these vaccinations until he was a little older however a core man at Naval Hospital mentioned 6 confirmed cases of measles in Vancouver,Canada. Washington is not very far from the border and we go to Children's in Seattle a lot so I did not want to take any chances. He saw neurodevelopment a few weeks ago. Changes: motor skills: greater than 5 months but delayed; social skills: 6-9 months. She recommended that he is evaluated by the therapy dept at Children's. I was discouraged by the home therapist to have this done however decided to pursue it since 4 professionals recommend it. I would kick myself later if I did not have it done. We are in the process of setting this up. He has early intervention services,PT and an eye specialist from the school district. Nutrition: He is gaining weight and getting taller, he is 18 lbs 11 oz and 2 feet 4 inches. I have decreased the number of times I pump per day (but still tied to pump machine) and am encouraging nursing rather than bottle feeding. This has been a bit stressful since it is a major change. Still have frozen milk to use. Looking forward to that day when more food can be stored in the deep freezer and less breast milk. He is learning to drink from a sippy cup and a toddler water bottle. He ate steak and peas for Easter, not steak the way adults would eat it. His favorite solid food is mangoes. This month he sees: pulmonary (maybe oxygen sat monitor wean, only using at night), neurosurgery, hearing test and swallow study. He sees the eye doctor at Children's in May. He is also having an eye specialist from the school district doing an evaluation for his vision impairment. Social: dad, Glenn, will be gone for 1 more month then come home briefly, Grandma Tomlinson is visiting for Easter and respite care with Stephanie started. Abe's former NICU roommate is over 18 lbs and is so cute, will post pics in late May. He never got to go to his home but is in a group home with his mother. The father and school age son occasionally make the 4 hour trip to see the baby and mother. It breaks my heart that he is so far from his whole family. I plan to go and visit Maria the mother some time. Abe, Stephanie and I visited the Fisher House, It was nice Glenn was able to check on our home in Florida and visit friends and family. My mom is helping to get the house ready for the hard wood flooring, hint, hint Glenn!!!! I will continue to try for monthly updates on his blog.

Hospital stay #5

Abraham was in-patient for 2 upper respiratory infections since 2/10/10. I tried to update during his last stay but it did not save. I do daily, probably annoying updates on face book but not everyone that read this is on face book, Mom!!!. Any ways Abe is home now after a 3 night stay, felt longer than that. I am sick to and if I don't get better or I get worse than I am going to be seen my doctor too. Go figure Glenn is gone for 1 month. The day after he leaves we don't have any hot water. The neighbor replaced a part on it but since it is a gas water heater we might be at risk for carbon monoxide poisoning due to ventilation issues with the house. Abe got very irritable last month and I thought carbon monoxide poisoning so I called poison control was suggested 911 fire dept. They came out and found no C02. Abe just was getting sick. We spent 2/10-2/14/10 (Glenn and my 4th anniversary) at Children then 2/27-3/2/10. Abe is losing weight again but has been sick twice in 1 month. He is better now but now momma is sick. I am hesitate to do social things now because it's one thing to have a kid that has to stay home from school due to illness and one that requires hospitalization with painful procedures. New changes with Abe: occasional oxygen need when sick, he is rolling more, started PT, eating more solids including peas and mangoes,has 3 teeth, has more hair, is 2 feet 3 inches, is saying more sounds: "ba" "da" "mamma" and is trying to say "poop" thanks to Glenn(for those that don't know him, he is very funny) and loves to hear daddy's voice in our teddy bears or over the computer web cam. He sees the dentist, neurodevelopment this month. His PCM had a baby boy so he will be followed by another doctor while she is out. He is looking at my computer right now, probably wondering where daddy is. I have not been able to talk on the phone much because talking increases my coughing then I have a difficult time breathing. I am not currently coughing but will seek medical attention if necessary. I considered not pumping any longer but Glenn says I could stop when Abe can eat a large steak without assistance, lol. I plan to continue until May to get us through cold/flu season. Social: Abe is a flirt, daddy comes back home in May, might do March of Dimes walk to raise awarness about premature babies, respite care should start as soon as fingerprinting and background checks are done and Grandma Tomlinson comes to visit in April for 2 weeks around Easter time. Pictures will be updated as soon as Glenn can walk me through it. My energy is fading and I am beginning to cough so that is it for now. Might only update monthly.

Birthday Boy

Abe just had his 1st birthday. I mailed out 1st birthday photo cards. Can you believe that this 2.2 pounder is now over 17 pounds and 27 inches long? He did not want to wake up so early that day and was a little cranky all day until he saw his doctor and the OB nurses at Naval Hospital. He has a little cold and so do I. I think mine might be a sinus infection. Medical status update: He started PT this week and seemed to click well with her. We have to drive 20 miles there and 20 miles home but it is a nice place. His doctor recommended this office. He saw neurosurgery last week. CT scan is stable, no need for shunt replacement at this time and brain growth. Next neurosurgery appt. 3 months, CT scan 6 months unless he has some issues. He will see urology for an undescended testicle this month. He also sees endocrinology. Growth/development: he is losing a little weight but is getting taller, I had him on the play mat today while doing dishes and when I glanced over he had moved positions without assistance, he is trying new sounds and still takes the spoon from me while he eats. He still has vision problems. We are supposed to have a vision evaluation from someone at the local school. I canceled his home OT appointment because he was sneezing, coughing, runny nose and just not himself. Social update: Glenn left to MI until May. The day after he left we did not have any hot water. The neighbor looked at it and it has to do with the exhaust venting outside the house. Right now I can't run the furnace and hot water heater at the same time due to the risk of carbon monoxide build up in the house. The neighbor does heating/cooling for a living so hopefully he will follow up soon. We do have working carbon monoxide detectors in the house so mom don't worry. Oh a different note I have learned that not all baby products work in all situations. The Moby wrap is great for small babies but kills the back for bigger/heavier babies. The Ergo baby is better and easier to use for bigger babies. I guess you have to try stuff out to really know if it will work well for you or not. The Moby worked great when Abe was smaller and did not move as much. One word advice for those expecting a new baby, read on-line reviews of infant items because most of them are pretty accurate. This will assist with deciding what items you will need and get the most use out of. Some items will have reviews: it rips, it is heavy to lift into the car, takes too long to figure out, ect.

1/24/10

On 2/2/10 Abe will officially be 1, can you believe it? God surely has done some great work for this boy. He had his first birthday party this weekend and he was dedicated at the church service. We had fun at the birthday party. Thanks to all of you that attended. We appreciate all the love and support that our family has received over the last year during our ups and downs, celebrations and re-hospitalizations. Glenn will be leaving for 3 months next week. He will come home for a short time then will be deployed to Diego Garcia until next year. He has only required oxygen 3 times over the last 3 weeks while he is sleeping at night. Since he removes the nasal cannula off his face we just keep the oxygen on blow by at 0.1 liters per minute. I can officially take him off of the monitor but I don't feel comfortable. His last blood work was normal, yeah, no more respiratory acidosis. Now we just need to keep him healthy. He will be receiving the RSV immunoglobin this week and he seeing neurosurgery. His last CT scan was stable. Sorry if I am repeating prior information. I don't update as much as I use to. Probably because I have a lot more to do now than sit around a hospital. I meet friends to walk around the mall, bible studies, MOPs and shopping. He was almost 18 pounds at this last appointment. There are some new pictures. You have to click on the top pictures then select Glenn picasa, "Abraham's birthday". Glenn just re-enlisted for another 6 years. I will update again if anything changes with the CT scan this week.

11 months old

New pictures will be in a few days. I hope everyone had an awesome Christmas and New Years. Sorry I have not updated in awhile. Neurosurgery: VP shunt is draining too quickly but CT scan on 12/31/09 was stable, therefore no additional surgery at this time. We go back to Seattle on the 28th. Respiratory system: oxygen wean, no oxygen at night if oxygen sats are 90-91%, occasional drips lower are fine. Cardiovascular: echocardiogram showed no evidence of strain on his heart. He can be off oxygen and monitor during the day except oxygen while in car seat. I left the monitor at home to take him to church tonight however I connected the oxygen up. The other day I left monitor on but no oxygen and he was 98% on room air even in car seat. He was close to outgrowing his car seat and stroller so he has a new one and for some reason his oxygen level lowers when he falls asleep in it. Technically I can discontinue use of monitor during the night starting tonight but I am too nervous to do so. His risk of SIDS is lower because he is older but hey I still have the monitor why not continue to use at night. Growth/development: 17 pounds 6 oz and length 2 feet 3 inches (69.12 cm). He is growing but most of the health care professionals are still concerned about this. He is eating solids. In fact he has to have his own spoon and sometimes does not want me to feed him. I end up putting more on his spoon and some ends up in his mouth and most all over the place. He is using his right hand more than he used to but still favors the left. He has progressed to level 1 nipple on the bottle and continues to breastfeed on occasion. Can?t believe I made it over 11 months of pumping. It has helped him and decreased my risk of breast cancer but it is so tiring. It?s like double feeding if you think about it. I breastfeed him, pump then bottle feed him. He is passing toys between both hands. I would say he is functioning at a 5 month old level however just barely starting to roll. Eyes: vision still an issue; Appears to be more aware of surroundings. Social: still smiling and I noticed this laugh this past week. Apparently dad noticed it months ago. Guess Dad is silly compared to mommy. We are celebrating his life, AKA 1st birthday on January 24th since Glenn leaves on 2/1/10. I decided to stay here in WA since we own our house and I already have friends here. We still need to put down the hardwood flooring and finish unpacking. I am looking forward to respite so at least unpacking and cleaning can be done. I will be busy in normal activities other than medical appointments, such as 2 women?s bible studies, walking the mall with other moms, MOPS and scrapbooking I hope. On a side note, a friend recommended butternut squash to feed him. I have never purchased or tasted it before. Wow it so yummy and packed with calcium, iron and vitamin A.

Christmas Day 2009

Abraham's shunt is not functioning properly so he might need a new shunt surgically placed. He has a CT scan on New Years Eve and sees neurosurgery. His last CT scan last week did not look very good however he clinically looks great. He is breastfeeding/bottle feeding, eating solids including many different types of food. His diaper rash is clearing up however we are still using dispoable diapers since the diaper cream effects how well the cloth diapers absorb. For Christmas he got some toys, clothes and musical stocking (from Grandma), a musical toy. Mommy got a jogging stroller however his OT is not sure it will work well for him. He slumps over in it. We also got an ice cream maker for our Kitchen Aid mixer. We plan to eat more natural healthy foods. If we make our own ice cream we know what is in it. Also I am learning how to make my own baby food. I figured that I would just post the Christmas letter here:
Dear Friends and Family,

Wow what a year. A few words to describe: major changes and a test of faith. However we all pulled through it thanks to God?s faithfulness plus the love and support of those around us, both near and far.

In January we moved from San Diego back to Washington. We are so thankful for the friends that made the trip with us. Only 12 days after moving Karen went into premature labor at 26 weeks gestation. Within two hours of arriving at the Naval Hospital she was told that it was too late to stop the labor and that she was too unstable for transport to Madigan (hospital with NICU). After he was delivered a true knot was found in his umbilical cord, which would have caused him to be stillborn. Thankfully Karen recovered quickly from the c-section. Abraham Robert Goddard was born at on 2/2/09, weighing 2.2 pounds and 15 inches long. With his life hanging by a thread he was flown by helicopter to Madigan NICU. His original due date was May 5, 2009. So he is truly as miracle baby.

Abraham had a complicated NICU experience. Karen finally got to hold him for the first time 14 days after he was born. Despite having many chronic conditions, including cerebral palsy, hydrocephalus, vision problems and chronic lung disease (all result of premature birth) he can drink milk, eat solids orally, say momma/dada, smile, and laugh and is working on rolling and vision. We are hoping that he can wean from the oxygen and monitor. His VP shunt is not functioning properly so he may have to start 2010 with another surgery.

Glenn returned to work in March. He is on a submarine tender. He spends his free time, remolding the house, Men?s Bible studies and playing WII. He will be going to Mississippi for school in February 2010. Then he will return for a short time before he deploys to Diego Garcia.

Karen made the transition from working as an RN to a stay at home mother of a premature baby. She spends her time taking Abraham to medical appointments, attending Bible studies, lactation collation teas and walking with friends. She is looking forward to respite care so she can unpack the house the scrapbook again. Also she plans to do more with her Mary Kay business and improve her homemaking skills.

We are planning for 2010 to be uneventful other than reports of Abraham developing skills beyond what was expected of him.

In Christ Love,

Glenn, Karen and Abraham

Quick post

Abe has been home for a little over a week. Happy, smiling and eating some solids again. He gained a pound while he was sick and it getting NG tube feeds for 3 and 6 AM. Occasionally midnight too however he is usually awake any time between 12:30 and 2:00AM. He some times does oral feeds for 3AM however he is usually snoring at this time. Mommy is awake because her alarm goes off every 3 hours to feed baby. His diaper rash got worse, most likely progressed to a yeast type diaper rash. His doctor called in triple diaper mix and it took a couple of days but his bum is still on the mend. Hopefully he won't need formula or antibiotics again. These both contributed to the diarrhea and skin break down and diaper rash. We are using some of the frozen milk since he requires 32 oz daily. Hopefully my supply will increase however it is tiresome to keep pumping. It's been 10 and 1/2 month. He sometimes even eats more too. Plus he is eating avocado, whole milk yogurt (healthy bacteria to help with the yeast diaper rash), pears and rice cereal. His VP shunt had to be reset last week, draining too quickly again. Plus CT scan showed CSF (cerebral spinal fluid) in areas where you typically would not see it. He sees neurosurgery again on the 17th. If the body has not reabsorbed the fluid then he might need surgical intervention. I really don't want his head to surgically tapped into again however it might be necessary. Given his age and risk factors I doubt it would be an outpatient procedure therefore he would be admitted again. Please pray that he stays healthy, that Glenn and I stay healthy and that his VP shunt works properly so that he does not require more surgery. Glenn will be leaving in February for school so please also pray that we get more done at our home before he leaves. We had some issues with both vehicles There is NICU Christmas party at Madigan (Army Hospital where he was air lifted to) this weekend. We are looking forward to seeing the nurses, doctors, ect that took care of him when he was so fragile and ill. He is a 16 pounder now so not a fragile.

Still In-patient

New pics. Abe is doing better but is still on medical unit at Children's. He is on 0.3 liters of oxygen.
When he can tolerate 0.1 liters and show no signs of infection he can be discharged home. His lungs sound clear to the nurses and doctors. This admission has been stressful. He went from all oral feeds either bottle or breast to continous NG tube feeds. He is getting 32 oz daily. My breast milk supply went so low that he required formula. This is difficult for me since it is the one thing with my child that I have control over. He was given 12 hours of Simulac Advance with my permission. We had no other choice since the frozen milk exceeds the hospital standards. The attending doctor recommed Domperidone which is from Canada. I know some women from LLL meeting that have taken it. I am going to inquire about any side effects or adverse reactions. The doctor also mentioned donor milk however I don't feel comfortable with this. Abe had foul smelling diarrhea with Simulac so if he needs formula again then Nutrimagen will be used. The plan is to decrease oxygen by 0.1 every 12 hours. He might go home Monday. Well he just fell asleep so when I finish pumping nap time for mommy too. We hope he is better for the Christmas party for former NICU families at Madigan. It would be a nice for them to see how cute he is and not a sick, fragile baby on deaths door. His smile is so cute but I am his mother.

11-23-09

I am typing from phone fo please bear with me. Abe's chest x-ray looked worse on Sunday however the doctors said that it is common for it to not show up right away. He is still in strict isolation. I had vomiting on Saturday night so I had to leave him very unstable. I drank a Sweet Leaf Mint and Honey tea that I got at the hospital. It did not taste right but I drank it. I contacted them and they are going to contact distributor. Could have been an issue with proper lid seal. I got better quickly, that night. I had planned to stick around the hospital until he improved. He is improving however he was requiring 1.5 liter of oxygen, at home he is on 0.1. When I left tonight he was on 1 liter. I wanted the nurses to lower him to half a liter however they did not want to do it while he was sleeping. He is not working as hard to breath but still too much to go home. Also he is in pain. He did play with his toys tonight a little and he made baby noises and smiled. He is on continous ng tube feeds and might go home like that. I am going to ask about changing his antibiotic to oral since he won't go home on iv antibiotics. Also his oxygen requirement needs to be less. He is getting CPT from respiratory. This helps break up the mucus on the lungs. Oh he has right lower lobe pnemonia. He will remain in isolation until the the viral screen is confirmed. He has had some wonderful nurses. I have been too stressed and tired to really help in his care other than pumping the breast milk. I am going to sleep while Glenn waits for the laundry to finish. I have had to wash clothes daily since I only have two shirts and two pants. I am going to give a friend a set of keys to the house and have a "just in case bag packed" Thanks for the support. He is a little fighter. We will post more pics

Increased oxygen need

New pictures will be available soon. Abe is not spiking fevers any longer, his heart rate and respiratory rate are closer to his normal however he is having episodes of low oxygen saturations. His oxygen was increased from 0.1 to 1 liter. The higher need for oxygen is related to his NG tube feeds and the infection. His left foot was red, hot and swollen. This is the same foot where his blood was drawn. There was potential for a blood clot in his foot however the doctors don't feel that is an issue since his foot is better. When he was desating I thought, "oh no he has a pulmonary emboli (blood clot that travels to the lungs and causes respiratory distress" This was ruled out and more common in adults than infants. The blood cultures that were drawn at Naval Hospital were positive for gram positive rod (e-coli is a gram positive rod) however Children's repeated the culture since it was a heel stick and not a peripheral stick (blood from the veins). He is on a broad spectrum antibiotic so it will be effective against gram + or gram - bacteria. The fact he does not have a fever I would say that the medications are working. His IV went bad so the nurse had to re-start a new one. Thankfully she got it with one stick. He is acting a little more like himself however he still won't show me his dimple, not smiling. Still don't know when he will be discharged home however I doubt it will be before Monday or Tuesday. He is not tolerating NG tube feeds, has low oxygen with it, so he is getting a little breast milk via NG tube, 40 cc/hour. Discharge criteria would: fevers stable, no increased oxygen demand, tolerating NG tube feeds and breathing easily. He is in isolation so it is not recommended for us to have visitors. It will take him some time to recover after he is discharged so we will probably take a break from bible study, MOPS and church.

11/20/09

Abraham is doing a little better. He even put his right hand over his IV. We had to cover it with a sock so he does not pull it out.I put his crinkle book, he loves toys that make the crinkle noise, near him and he started to play with it a little. Then he fell asleep. He has not had a fever since early today. His cheeks are not flush and he is more alert and awake. He is still receiving IV fluids and was started on NG tube feeds at noon today. He will get 4 oz every 3 hours day and night. He is not strong enough to eat orally right now. He is still working really hard to breath and his oxygen saturations are lower. They are going to check with the doctors if he needs his oxygen flow increased. He is still on 0.1 liter (same as home). At home he does decrease to 87-88% however usually without oxygen. He has been holding his legs in the frog position, which could be a neurological sign. Neurosurgery feels that he does not have a VP shunt infection however they are also monitoring him while in-patient. He has a follow up CT scan and appointment scheduled the first week of December. Not sure if I posted this here or on face book however he also has pneumonia. We are not sure when he will be discharged home. However his fevers, respiratory status and nutrition/hydration would all need to be under control. He probably will need NG feeds at home.

Flu

Abe came back postive for influzena type A, most likely H1N1. He was given a dose of antibiotic and started on Tamiflu. He is not doing well with taking his medications orally. He might require NG tube for medications and for feedings. We are going to try the Tamiflu in a small amount of breast milk. He is still working very hard to breath however is looking better and acting more like himself. He has fight in him (good thing for such a sick baby). He is not really wanting to be held and wants to sleep. Not sure where he picked up the flu but interesting that he had dose number 2 of the seasonal flu the day prior to getting punky on us. The flu shot is not a live virus so we think he probably already contracted it before Tuesday. He was a little clingy and fussy Monday night. Please continue to pray that his fever will break and his work of breathing will lessen so he can eat and get the antibodies the breastmilk will provide. I am not sure if Glenn and I will need Tamiflu.

Not well

Abe had his second seasonal flu vaccination on Tuesday and Wednesday morning he had a cough. We went to his scheduled appointments then headed back to Bremerton only to miss the 5:30 PM ferry. Had to wait until 6:45 pm and the heat in the Jeep is not working. Abraham was not taking in very much fluids however he could not eat for 3 hours prior to abdominal ultrasound. He took in only 8 oz since midnight so when we got to Bremerton we called pediatrician on-call. (He also had dry lips, flushed checks, fever of 101.1 and decreased urine output). We took him to Bremerton Naval Hosptial where he had blood cultures, IV fluids, chest x-ray, VP shunt series (x-ray that looks at his shunt). He was then transfered to Children's via ambulance. I would have just taken him to the ER when we were in Seattle however I am not sure if Tricare would have allowed this. It would have saved us huge travel time. By the time Abe and I arrived at Children's he was working hard to breath, although maintained his oxygen saturations without increased oxygen requirement. They are not sure what is wrong with him but he is being worked up for RSV, H1N1 and other cold/flu viruses or bacterial infections. His second chest x-ray really was inclusive of pnemonia however his clinical picture shows possible evidence. He can't eat right now however is getting IV fluids. CT scan in the middle of the night showed that his shunt was draining too much CSF so neurosurgery NP, UW grad, :-), reset it to drain slower. He still has fevers, flush checks, working hard to breath and is full of gas. So anti-virals or anti-microbial agents have been started. His heart rate is very high and respiratory rate however he is maintaining his oxygen saturations on 0.1 liters of oxygen (what he uses at home). He is not very interactive, appears to be in pain if moved and just wants to sleep. Neurological causes are also being ruled out. We are not sure when he will be discharged however please pray that he will return to his spunky self. He won't even smile to show me his dimple. He gave me sad lips when I asked him to show it me. His urine output has increased. Glenn is sleeping right now. Abe is in strict contact isolation so I don't think we can have visitors. Glenn and I are healthy. The nurse had to wear a special mask when collecting his nasal swab (test for viruses like H1N1). I am headed back to his room now. We might not make it on Sunday for the baby shower. Depends on his status, if we go home and also if it recommended for him to be around other children and people. He looks like a very sick baby in his crib here at Childrens. Thanks for prayers.