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.

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.