Tuesday, March 31, 2009

My first oral feed

Yep that's right I did Binky training (pacifier hooked to a tube, syringe and milk) today and the occupational therapist even let mommy hold me and walked her thru how to do it. Our nurse Sarah took some pictures too. (Daddy will post later this week). I got tired but boy did I fool her. She thought I would stop at 1 teaspoon oh no I took the whole 10 cc (1 tablespoon). I did have a fast respiratory rate and I even had low oxygen at the end when the syringe was taken off (caused a fast flow) so I am not 100% ready for larger amounts. I am just so happy to get finally taste the milk my mommy works so hard to make for me. I might get to do a "dry nursing" from my mom soon. This means that she pumps the breast milk then the occupational therapist checks my ability to breastfeed. There goes mommy's sense of modesty however she is willing to compromise on my behalf. I get to try Binky training again tomorrow. Sarah has been my nurse for the past 3 days and everyday mommy verbalized how upset she is about using the pregestimil with the breast milk so Sarah arranged for the the dietitian spoke with her. They tested her breast milk and wow it was 27.6 calories per ounce (typical is 20 calories per ounce). Since my mommy is petite and not too overweight I think they were very surprised. However mommy enjoys eating chips, chicken strips, cookies and ice cream sandwiches. She is checking into a creamatocrit (device that measures fat and calories in breast milk) for use. I have never heard of this until I read a Medela book that the lactation consultant at Madigan gave me. I am not sure if this is considered DME (durable medical equipment) that Tricare would cover for rental. Most NICUs would rather just add formula to breast milk because it's easier however I am really advocating not to use it. They are going to test the breast milk for 24 hours to see the differences in calorie content. They sampled one at 3PM today. I am curious myself since the myth is that all breast milk is 20 calories per ounce. I read that breast milk from mothers of premature babies is typically higher in fat and calories to compensate for the demands of being outside the womb. He is close to graduating from the NICU however not ready to be discharged home. He is still in an isolette for body temperature control so he would need to be tolerating feeds which might include breast, bottle and tube feedings, breathing well and maintaining his body temperature. They are checking to see if he can stay at Children's Hospital on a regular medical unit rather than being transported back to Madigan. It depends on what Tricare says. I would assume back transport would be costly any ways. Also he still might need neurosurgery and the army hospital can not provide this. I am going to tour the medical unit sometime this week. I am so nervous about him progressing so quickly. Our house is not ready for him to come home. Re-modeling has not taken place yet. Also we never really unpacked too much because we knew that we would remodel. Since he is on high flow oxygen he is not ready to be transfered to the regular unit yet. They can't take care of babies on high flow oxygen in the regular units. He would have to be on 2 liters or less, non-high flow. He is currently on 3 liters however sometimes he is bumped back to 4 liters. It's getting late and I should get some sleep.

Sunday, March 29, 2009

Big Changes

Abraham was put on high flow oxygen by nasal cannual last night. He was agitated by the CPAP mask. (new pictures without breathing tube or fish lips). This is a good thing because it's a less invasion way to maintain oxygenation. His tube feedings are up to 40 cc every 3 hours. The calories are 26 per ounce. I am very upset because they added human milk Fortier, pregestimil powder (formula, yuck) and bene protein. The whole mixture is 50 cc of breast milk, 1/8 teaspoon of pregestimil and bene protein. I understood the human milk fortifier however I feel that they should have got my consent for pregestimil. I absolutely, 1o0% did not want any formula at all. They did this without even discussing with me. Some of the first ingredients in formula are high fructose corn syrup (cheap sugar). I also did not want formula because of the toxic chemicals that are found in it (China) and the cost. If our insurance does not cover the cost then we will be stuck paying for formula that we did not even want our baby to have in the first place. I don’t know what I can do to make my breast milk have more calories and fat. In fact I don’t think I can do anything to increase that. It is what it is. Maybe the La Leche League would have some suggestions. Also if he can tolerate oral feedings they will be mostly by a bottle. I asked about alternatives to using a bottle such as cup, medicine dropper and the new attending indicated that this is not an option at this hospital. I would be willing to be there to do this even. I am refusing liquid formula however I feel like I will have to make a note to post at the bedside indicating this since different nurses and doctors take care of him. I am not there 24/7 so things are just done. It is so routine for them to give formula that no one thought about getting my consent to do so. I won't be able to give him his first oral feed either. It has to be done by an occupational therapist, it's called binky training (a pacifier with a syringe and his breast milk mixture. He or she will have to ensure the suck, swallow and breathe aspects of feeding. He might go home on oxygen and tube feedings. I might not get to breast feed him at all. We don't know yet. If I do it will be 2 times a day and everything else will be by bottle or tube feeding. I really envy the women that don't have to go through all this crap. They can go places and just feed their baby. I feel like I have been robbed. What did I do so wrong that I would have a baby that requires needs like this? There is a great chance of cerebral palsy which will manifest itself at age 2 or later, when he fails to reach milestones. I definitely think he can hear, see and react to stimuli, I just don't know if he will continue this or not. The attending doctor did indicate that he is doing well however that he will have some degree of disability. His gallbladder is enlarged however they don't know why and are not treating the issue. He is on oral caffeine and thyroid medication. He does not have an IV. He has tube feedings and high flow oxygen. He is still in an incubator because he can not maintain his own body temperature. This week he will get his first set of immunizations. Tomorrow he will be 2 months old however he is not expected to act like a 2 month old that was born at term would. After all he was supposed to be inside of me until May. He reached the 5 pound mark and is a little over 17 inches long.

Friday, March 27, 2009

My Son Definately has Sailor Blood

He has sailor blood because when I held him on Monday he farted on me and it smelled so bad. He could have done this before I held him but no he waited. Maybe he will do this to daddy too. One of the ladies at the Fisher House think he will take after Glenn and I will have my hands full all the time. Also he was sneaky today, he pulled out his oral-gastric tube (tube that goes down the throat to the stomach) when no one was looking. I told him this is his food source. Hopefully he listened. He also managed to get his arm un-tucked from his blanket and use the hand with the IV in it to pull off the hand mitt off. He calmed down when I was there with him but the minute I stepped away and let some friends take a peek at him he started fussing again. I heard him cry today too. His cry is not a strong as Brenden's, Matthew's or Jaylean's (San Diego babies, well toddlers now) but enough to make your heart break to hear it. Since he has been intubated it's good to hear him cry. Other than recently I have not heard him cry since he was born. Glenn has never heard him cry. He is still on CPAP (continuous positive airway pressure) and in an incubator. He can't regulate his body temperature. This can be because he is still young (33 weeks gestation) or from the hydrocephalus. His thyroid test showed that he still needs medication and he has adrenal insufficiency. I am not sure what is causing the adrenal insufficiency. I wonder if it's related to the damage to his brain since the brain regulates everything the body does. The care conference is tomorrow at 2:30. He has another cranial ultrasound tomorrow. Please pray that everything goes well with the care conference and that we get reassuring news rather than very bad news. The attending physician is new this week so it will not be with the one we are familiar with however she seems very nice and has tons of experience.

Wednesday, March 25, 2009

Quick update 3/25/09

Abraham got the breathing tube out again today. He seems to be doing well the CPAP (he breaths on his own but this forces oxygen in his nose). Adults with sleep apnea just the same thing. The respiratory therapist just changed out the nasal mask and the holder on his head. He is on IV fluids. If he does well on the CPAP then his breast milk feedings will start again. The resident apologized that he went so long without any food or fluids yesterday. The child life therapist just completed therapeutic touch on him and he is peaceful right now. They still don't know why he stopped breathing last night. The attending thinks it was related to all of his energy stores were used up because he was not able to maintain his body temperature. A navy wife has volunteered for the name labels. I was able to get my antibiotic at a store close the hospital. I had no idea that the prescription could be transferred from a military hospital to a civilian pharmacy. Abraham is such an adorable baby. I know how much he is loved. Thanks again for all your prayers and support. His care conference is on Friday. Please pray that everything is good. It's always a little nerve racking when a formal meeting is scheduled. Please also pray that he tolerates CPAP and that his feeds are re-started again. I might update again tonight if anything changes however I am kind of exhausted today.

Tuesday, March 24, 2009

Roller Coaster Returns

Today was not a good day. I woke up with significant bladder infection symptoms and the pharmacy did not receive the order for the antibiotics until late.Glenn was not able to pick it up because the computers were down and I played phone tag all day with the nurse. She said that the doctor ordered it however she went to surgery before it was signed off. I tried all day to find out if it could be picked up at the VA pharmacy. Bremerton said yes can that it can be transferred over however VA said that they can not. The Fellow at Children's wanted to call in the prescription for me tonight however she was not able to do so, which I completely understand. However the charge nurse called Bremerton pharmacy after 10 PM tonight and was told that I could go to a local pharmacy and have it transferred, well this requires a pharmacist to be on duty, he was a tech and was not able to do this. So I have to suffer until the morning when the pharmacist at Bremerton gets there. I wish I had known this earlier tonight. Hopefully the pharmacy tech provided accurate information. I need to check with Tricare about transferring my care to this side of the water.
Abraham got his breathing tube out, (for a little while). I got to hear him cry today and so did Katie. He even sucked on a pacifier. His 12, 3 and 6 feeds were not given because he was getting extubated (breathing tube out). I questioned, "wait a minute he is a tiny baby with no feedings and no IV fluids" for almost 8 hours.I pointed this out to the nurse however the doctors were reporting off for the night. I got concerned about low blood sugar and electrolyte imbalances. Katie and I waited to leave after the IV fluids were started. I wanted to make sure that he has some fluid going. An adult or even an older child can tolerate not eating and no IV fluids, but when you weigh less than 5 pounds, have trouble maintaining breathing and your body temperature this is not good. When I got back from Babies R Us the resident stopped me before going into his room to let me know "he stopped breathing so some reason, we are not sure why". I question if the lack of food and fluids for over 8 hours may have contributed to his crumbling status. The resident assured me that was not a factor that caused this. He was drugged up, I mean the poor kid had his eyes opened and did not have a clue that I was there and back in the incubator he went. This broke my heart to see him like this. He barely was responsive to me and his heart rate was lower than normal.He lost a little more weight too. I am concerned about infection: low temperatures and heart rate. His heart rate is normal but lower than normal. Please pray that his feeds can be restarted (temporarily on hold), that he tolerates the new endotracheal tube, that he gains weight instead of losing it, that he does not have an infection and that I won't get the run around with getting my prescription filled.

Monday, March 23, 2009

Favor to Ask

Does anyone sew? If so would you have time to make and sew on washable tags on his clothes and blankets? This is so his clothes don't get lost at the hospital. Preferably someone locally in Washington so they don’t have to be shipped somewhere. I graduated with high honors from nursing school but I don't have a clue how to sew. I actually failed it junior high, received a C--. My mother and sister Annette know how to sew but I got the other genes, (meaning I am a very poor homemaker). However they both live in Arizona. Glenn knows how to sew however he has so many other things to do right now, work on the ship, commute back and forth to see the baby, and work on getting the house ready for the contractors, that he probably does not have time that time to do so. I hate to burden people but we have so much going on right now and I identified this as a need. We would truly appreciate this.


He tolerated being held for a long time today. He made me nervous though because he was moving his head so much that I thought his breathing tube was going to come out. He is tolerating 1 ounce of breast milk with fortifier every 3 hours now so his PICC line (central venous catheter was taken out). This decreases his risk of infection. He was very lethargic tonight with his 8 PM care. I mean completely different than earlier in the day or the last several nights. This really concerns me. His nurse thinks it's because he is working hard to maintain his body temperature. I just know as a mom he was completely different, I mean he did not put up a fight at all. He lost 500 grams too. I am not sure if he was lethargic because he used a lot of energy when I held him today. I am also concerned that he is showing signs of infection or this is a neurological sign. There is a risk of infection when pulling out a PICC line too. If he loses more weight then he is back in an incubator with no clothes on. I hope that when I see him tomorrow he is feisty because being lethargic is not a good thing. Please pray that he will continue to tolerate his feeds, gain weight, maintain his body temperature and not get an infection. He is not quite ready to go off the ventilator yet his rate is still at 35 however the pressure support and oxygen level requirements are low (good thing).

Sunday, March 22, 2009

Daddy's BOY

That's right mommy and the nurse bullied Daddy into holding me. I loved it, I got to see him close up then off to sleep I went. Daddy's arms started to fall asleep and his stomach was hungry so back into the crib I went. After my quick bath and trip to the "big" baby scale (my bed does not have a scale in it any longer) Daddy read me a Veggie Tale book. The pictures that have Abraham on his side and wide awake are when Glenn was reading to him. There is also a little video. It was so cute because Abraham was looking straight at him with his eyes wide open. He was even trying to move his head closer and sucking on his breathing tube. He moves around a lot sometimes and if you look at the clock, it's about 1/2 before he gets his tube feeding. Glenn commented, "This boy is hungry, a daddy knows". He settles in after he eats. He is getting almost 1 ounce of breast milk with fortifier every 3 hours in his NG tube. Today his nurse gave him his first pacifier because he was looking around and sucking on his breathing tube. “He wanted to eat”. He also got a new room today with a window view so he was checking everything out. He definitely can hear because when an alarm goes off he has facial expressions, especially when it’s not one of his alarms. He has a roommate, another boy. His roommate’s twin brother is in heaven. It must be hard for the mother but she seems to be hanging in there. Her family lives 3 hours away and she has a school aged son too. Medical updates: steroids to mature lungs for ventilator wean, there is an air leak around the breathing tube and Abraham moves his head back and forth (sign that he is outgrowing the ventilator), hypothyroidism is still an issue, another brain ultrasound Monday, his heart rate decreases (this is new for him), nurses say this a is normal preemie thing however he just started having this issue, potential causes: cold body temperature. I wound have to research other causes, I think infection can cause this too. He still has low oxygen levels at times however he has them less than before. He weighs 4.4 pounds and is 17 inches long (too tall for some preemie clothes). He also has adrenal insufficiency because at least once a day his blood pressure is low. This could be related to the hypothyroidism since the adrenal gland and thyroid are related to the endocrine system. His kidney and gallbladder are also enlarged, not sure of the exact cause. Please pray that he tolerates the ventilator wean, he has one more day of steroids and the ultrasound shows improvement in the brain tissue, especially the ventricles since they have been enlarged. Today was my last dose of the prednisone and Claritin; The contact dermatitis cleared up. The NICU still had me give him the breast milk even though I was on medications. We don’t know how much prednisone is excreted in breast milk however it might help his lungs since it’s a steroid too. Also caffeine is sometimes given to preemies to help with respiratory status. Some of this is also excreted in breast milk. I guess it’s more cost effective for me to enjoy a Coke then to have some fancy IV caffeine given to him. I will probably have to stop drinking caffeine when he breast feeds normally but for now I will enjoy it and it probably helps him. Still trying to maintain a normal schedule however I tend to wake up around 9:30 or 10AM. I probably should get use to the the every 3 hour feeding schedule however it's difficult without having him with me 24/7.

Friday, March 20, 2009

Open Crib

I forget to let you that he likes to be wrapped in blankets so the incubator was getting him too hot so he was changed to an open crib. The incubator is outside his room just in case he needs it. I was so nice to talk to him in an open crib and see him in clothes. Well it's 1 AM now so I really should get some sleep.

Thursday, March 19, 2009


Changes: I held him skin to skin for almost 3 hours, his feeds were increased to 20 cc every 3 hours with supplement to make it 24 calories per ounce. Will go up to 21 cc every 3 hours at midnight. Ventilator changes: rate decreased to 40 and pressure support from 12 to 10 (good thing), he is still requiring oxygen beyond room air which is 21%, his oxygen requirement is between 35-50% (not good but better than before). His nurse tonight was a labor and delivery nurse and has worked several places including Alaska. She has a friend that has a similar experience with her premature baby: heart shaped uterus, brain bleeds and a diagnosis of CP. The child is now 5 years old. I am going to check out the website, currently the site is down. On my drive back to the Fisher House, AKA home, I heard that Country song again "It Was Just a Dream" (about the military man that dies in the war and she is preparing for a funeral instead of a wedding), the line that gets me the most is "This can't be happening to me this is just a dream". I feel like I am being punished for something I did or did not do. I tried very hard to be careful while pregnant, like take my vitamin every day (even had a reminder alarm off on my phone daily to remind me to take it), drank water, laid on my side while sleeping, tried not to lift anything heavy and limited caffeine. I love soda and green tea but I eliminated the green tea since it interferes with folic acid absorption. I read him a story tonight and it talks about the miracles that God preformed. Is it wrong that I feel that he won't heal him? Is it his will that Abraham require extra care? Right now we don't know. I am growing more attached to him and it would be difficult to let him go to heaven. I just don't understand. Everyday millions of babies are born that are healthy. Their parents may not have the best lifestyle and not be in a situation to provide for them but it boils down to their babies are healthy. Granted I do have the background to care for a child that has a chronic medical condition. He seems to be so perfect and it will be difficult for me accept in the future that he might not be able to walk, talk, swallow food, hear or see. Would God want a child to remind on earth and not have a quality of life or would he want him in heaven where he can make a difference. Aubri in Guam sent us a card that her friend Kelly wrote "God does not make any mistakes". I just am questioning why and it's probably not good to have this question. I am going to stop now because this could just keep going. Children with CP can have a quality of life, I have taken care of several; However if he does not know his world at all or who his parents are then what his quality of life?


I had another appointment in Bremerton today. The midwife I met was very nice. She experienced a loss in her family so she could relate to the stress of having a loved one in the hospital and being far away. She reminded to follow my faith and to accept support from other people. I wanted to find some of my clothes, shoes and TENS unit for my neck pain however I spent my time re-washing all of my clothes and at appointments. I was using Tide which my mother says I am allergic too. Well my mother was definitely right. I won't wash my clothes in Tide again. Abraham had his eye exam today, I don't have the official report but his nurse said that nothing significant was found from what she read. He has an ultrasound of his head is on Thursday. Changes: feeds are up to 17 cc (1 teaspoon is 5 cc) every 3 hours and they are adding human milk fortifier so that it equals 22 calories per ounce. This made me feel inadequate however apparently breast milk has 20 calories per ounce. They can't increase the volume of breast milk for him at this time so the next best thing is to add calories. He needs the calories and this has nothing to do with my breast milk not being good enough. I really wanted to do everything all natural: no c-section, no epidural and nothing artificial however God had other plans. When I was told that I would need a c-section I even requested to not have any anesthesia however the nurse anesthetist said that would not be an option. I am so glad that I listened to him. A c-section with no anesthesia probably would have sent me into shock so the benefit outweighed the risk. If I get pregnant again all of this unexpected and stressful stuff won't happen; Just a normal healthy pregnancy with a healthy baby. I brought in some clothes for him tonight that my former c0-worker in San Diego gave us. I can't wait to see him in different outfits.

Tuesday, March 17, 2009


I am still in Bremerton, will be going back Wednesday evening. My rash was diagnosed as contact dermatitis (non-infectious). I was prescribed prednisone and Claritin. I was nervous about taking them since Abraham is fed breast milk however the rash got unbearable (interferes with sleep and very red/itchy). So I had to weigh the benefit verses risk. If the neonatal doctors and lactation consultant don’t want him to have the breast milk I do have a supply for him so I could always use this for plants or just dump it. I called his nurse for an update. She has been with him for the past 3 days; however she was out on two transports to pick up some other babies today so another nurse “babysat” him during that time. She plans to turn the music CD on for him to see how he does. His ventilator settings were lowered (good thing), he pooped twice last night and neurosurgery has signed off at this point. This means that he is not showing evidence of needing a shunt. Yeah, prayer is working. Thank you all and most importantly, THANK GOD. There is still potential that he will need a permanent shunt. The goals at this point are to wean from the ventilator and breast feed like a normal baby. This probably won’t happen over night though; More likely to occur in a month or longer. His gallbladder and one kidney are enlarged. We are not sure why and if he will outgrow this or not. He is still requiring medication for hypothyroidism and it‘s not clear if he will always need this or if this is related to being a preemie. He has an eye examination tomorrow which looks very painful to Glenn. Please pray that he does well with this and does show any evidence of blindness. Preemies are at risk for blindness especially when they require high oxygen concentrations. I will work updating some pictures.

Monday, March 16, 2009

First Bath

He had his first bed bath last night and his nurse brought in some clothes. He was too long for some of them since he is just about 17 inches. He is a little over 4 pounds. I got to wash and comb his hair. He was awake and calm after his bath. He was stable enough to get a smaller "house" AKA incubator. The other bed was for micro-preemies. They only have two of these beds. Apparently Children's Hospital is not use to working with young preemies. They are use to dealing with older neonates with complex medical problems. His nurse today played some music and he seemed to enjoy it. The head CT showed improvement but the ventricles were still very large and the brain tissue is thinner than it should be. Please pray that God will heal his brain and make him strong. He does have a personality. He definitely did not want to be bothered today when he was sleeping. He enjoys lying on his belly so his head is getting misshaped. We are back in Bremerton now. The contractor is coming by to start working on the plans for the re-model. Wow Glenn and Mark really did a lot on Saturday. They needed to clear space for the contractors. The house is still a mess but hey what can you say I had a c-section 1 1 /2 week after we got here. Apparently my incision is bigger than the norm too. I rested a lot the week prior which was probably good for him, allowed him to grow to 2 pounds. Some other babies in the NICU weigh 1 pound. Well I should get some sleep. Oh by the way no new pictures have been posted. Glenn will work on this or at least show me how to. We borrowed a friend's camera and are returning it. We started using our own camera today.

Sunday, March 15, 2009

3/14/09 (no new pics)

Glenn will work on updating the pictures on Sunday, probably late Sunday since we are usually at the hospital until 9PM or later. The doctor did not give us the CT scan results. Glenn went to Bremerton with Mark McKinley, (he is here from Alaska for work, and we know him and his family from when we lived in San Diego). Thanks Mark for helping organize the house a little. The plan is to re-model the house before May. Glenn came back tonight to pick up at the hospital. He seemed to be comfortable today however still has a low oxygen level at times. His heart rate stays good which means that this is related to his lungs. We might have to get rid of our cats if he has asthma as a result of being premature and needing so much breathing support. We won’t know this until later on. One concern is that his head size increased 1 cm since Thursday. This probably means that he will need another shunt placed. His feeds will increase to 7 milliliters every 3 hours. Yeah, I think most babies take 60 milliliters at this age. He is a long ways from feeding like other babies. He has a breathing tube so his feeds are given in the NG tube. He barely tolerates anyone touching him for diaper or positions changes. He is almost 32 weeks gestation however he still should be inside the womb and not in the outside world. Some day he will tolerate being held and touched better. He does like to be wrapped in a blanket now. I went to the health fair today at the hospital. I learned that children need to see a dentist as early as 1 years of age. I thought it was at age 3 or older. I got a free bike helmet and fitting too. I also found out that the music therapist can make a CD recording of our voices for Abraham. Glenn thinks reading a book to him on the CD would be a good idea. I asked the nurse about this and she passed it on to the night nurse. I also learned about a free parent magazine and a website that sends you information based on your child’s age. The hospital was so crowded today.

Friday, March 13, 2009


The doctor gave us a quick update about the head CT scan. The ventricles are smaller (this is a good thing). This means that he might not need a permanent shunt placed. We are not sure about the degree of damage to the brain. He still had episodes of low oxygen without his heart rate decreasing. The chest x-ray showed worsening chronic lung disease. This happens due to the immaturity of the lungs and being on a ventilator for an extended period of time. They are now keeping track of when this happens. His nurses today had his room dark and a blanket over his incubator (he likes this). The policy advices to keep the lights up and the blanket off from 8AM-8PM so the babies know day and night. Since he was not even suppose to be here yet I am not sure why this would be good for him. I am going to advocate that if it works better for him to not have light/noise exposure that they do this for him. His feeds are going to be increased to 1 teaspoon (5 ml) every 3 hours if tolerates it. Glenn came to Seattle today. Well we need some sleep. We are hoping to get an early start in the morning, if possible. Please pray that the brain CT scan on Sunday shows continued improvement, that his lungs improve and that he tolerates his feeds.

Thursday, March 12, 2009

Quick update

The drain in his head was taken out today 3/12/09. He had a pretty tough day, no pre-medication prior to taking out the drain. He was given medication afterwards. I tried my best to pre-medicate my patients when I was surgical nurse. It did not always work but I advocated for physical therapy to come back after the pain medication was working. I was not there so I don't know what happened. Tylenol was not enough so he needed morphine. It would have been nice to pre-medicate him before the drain was taken out however I am not sure why this did not happen (neurosurgery just showed up or the nurse did not think he needed it). His thyroid medication was adjusted, lower dose. His oxygen level got down to 49 (very bad) today and it should be between 88-95%. He even turned a little gray in color. This concerns me because he was laying on the side where the drain was taken out. He was finally put on his belly and appeared to be more comfortable. I got to hold him for a few minutes. His breathing tube has an air leak and he was turning blue and gray around his lips (bad oxygen sign) so the nurse put him back to bed. The angle I was holding him was causing me some shoulder and neck pain. At least he got to be held for a little while. I did not ask about the CT scan results, in fact only neurosurgery talked to me today. Glenn is coming back, 4 days off from ship, so I figured it would be best to find out the results together. I have learned that no news sometimes means bad news and the doctors just don't always have time to discuss. They wait until they have more allotted time, which is good so that they can explain or answer questions. This is also a bad thing since we have to wait a day or two to get results. He may or may not need a permanent shunt placed. Neurosurgery is assessing him daily to determine. He needed blood yesterday and his urine output is on the low side today. Please pray that the CT scan showed improvement in brain structures, urine output increases and that he continues to tolerate his feeds. He is up to 2 mililiters of breast milk in his NG tube every 3 hours. This amount will be increased by 1 mililiter every 12 hours if he tolerates it. I still don't know about the enlarged gallbladder and green mucoid stool. I think I should start making a list of my questions and physically hand it to the nurse so that it can be passed on to the doctors. The NICU has been so busy. A twin boy passed away this week. His brother is still pulling along. The mother appears to have a lot of support from her husband and extended family. I talk to her a little bit; there is a slight language barrier. I talked to 2 mothers of special needs children. There are support groups out there however we don't know right now the prognosis. It seems like they spend a lot of the time in the hospital. Probably at least 3-4 times a year, if not more times. Surgeries that are routine for some children become an extensive time in the hospital for there children. I did not post the other day because I did some laundry instead. Got to bed at 2AM. It's after midnight so it's time to get some sleep.

Tuesday, March 10, 2009


Abraham had a pretty good day today. His temperature was up and down which could be a "normal preemie thing", an environmental thing, infection or a neurological sign. Thankfully his nurse listened to my concerns and checked that his white blood cell count is elevated. It was supposed to be checked again on Thursday however it will be done in the morning. He is so cute when he opens his eyes. I guess sometimes he does not always open his eyes for people. The neuro nurse practitioner, neurosurgery fellow and resident came in to give me an update. Apparently the color of the cerebral spinal fluid is normal for his age. He is up to 4 pounds however this is a significant weight gain so it might not be accurate. His weight is checked nightly. He is not stable enough to put on a normal baby scale. He is weighed in his incubator. The nurses keep saying "wow he is big for a preemie". His feeding is up to 1 mililiter of breast milk every 3 hours. Today when the nurse, resident and I were so busy looking at his belly he got his little hand around his NG tube (feeding tube) and pulled on it. I caught him in action and stopped him. He is very active and aware of his surroundings. He does look healthier to me however he is still in critical condition because he suppose to be in-utero until May. I am thankful for the prayers that are healing him. On a side note his nurse told me that I look like am 18 years old. Wow that's giving me more than 10 years since I am almost 35. It must be the Mary Kay skin care that I have been using for 9 years and genetics.

Monday, March 9, 2009


I almost go to hold him again today however the nurse was concerned about his drain and got called away to check on her other patient. She left his cover on his incubator open for a long time today and unfortunately his temperature increased too much. She wrapped him in a blanket however left the warmer on since she was called away. I went to get some dinner and when I came back the top was still open and his heart rate was almost 200 (this is high for an infant). She un-wrapped him however he was very active with his hands and feet. She put socks on his hands to prevent him from pulling out his tubes (he still tried to wrap his wrist around it). He was alert and did not seem to be very comfortable. I stood at holding his feet until the night nurse could re-organize him. She got him much more comfortable and discovered why his drain/shunt had an issue (the collection chamber had an air bubble). Once he was comfortable she advised me that the roads might get icy so it's best that I head home. He will probably have a permanent shunt placed his week. I am not impressed with the neurosurgery nurse practitioner. I get the impression that she wants to get in assess him, check his chart and get the heck out of there. I understand that she is busy however having studied to be an NP myself I find this very disappointing. Next time I won't ask her any questions. I will ask the neonatal team and have them relay the questions. I will however demand to talk to the neurosurgeon directly, prior to the next surgery, so that I am not left out of the loop on his medical care. After all I am his mother. What's interesting is the neuro NP knows that I also studied to be a family nurse practitioner so I am not an idiot. I feel for other families that have no medical knowledge or experience. I might ask the attending physician the NP's role, maybe it's not in their job description to education/update the family on changes in their child's medical care. Other this time I am impressed with the care that he is receiving.

Sunday, March 8, 2009

Sneaky Baby

I got to hold Abraham again today for 1/2 hour in a blanket. We did not do skin to skin contact because I have a rash on my stomach. The resident checked it and was not concerned about it. I don't have fever or other symptoms that would warrant concern. The drain in his head is draining more which concerned me however his head was full so this is good. I am not really sure why this would have happened if the purpose of the drain is to prevent fluid from accumulating. Glenn commented "this could mean that the fluid was still present and the CT scan did not show the brain tissue re-expansion". Yesterday we were told that the drain is draining at the same rate the body of producing the fluid (probably not a good thing). I am going to ask tomorrow. Glenn headed back to Bremerton tonight with a cooler full of breast milk. We are running out of freezer space. One of the nurses tonight mentioned a breast milk donation program. I forgot to ask her more about it. He is getting 1 cc of breast milk every 8 hours. It was every 12 hours. So this is a step in the right direction. He is a sneaky baby, as we were leaving we peeked in to see him, he had his left hand on top of head and he was messing with this drain. I tucked his hand in blanket and placed the little cloth hat over it. He did not pick on his head before the drain was there. This probably means that his brain is working beyond what the doctor says is "just a reflex". The doctors and nurses are very kind, don't get me wrong however they also have to give us all the information that they know about him. Another positive he is stable enough that his night nurse was assigned to another patient too (sign that the level of care is less intense). He tolerated lower ventilator settings in the rate, pressure and FI02 (oxygen level). Well I will be on my own since Glenn is headed back to work. He does plan to visit when he can. He needs to get some stuff done back in Bremerton, work with the contractor to extend our house (our house is very small) and we had planned to put in a dishwasher, bigger kitchen and maybe bathroom before May. He also needs to enroll Abraham in DEERS so that his Tricare (health insurance) coverage continues. Pictures will be updated on the weekend when Glenn can upload them.

Saturday, March 7, 2009

Still growing

The attending physician had the discussion with us today about the CT scan results for 3/6/09. There is some brain tissue and he was definately born with a brain. However there is damage. He will probably have deficits. The extent of the deficts is unknown, more likely moderate to severe than mild. The physician had a great bedside manner, very tactful and asked us "Do you think that he is in distress and is suffering?". Abraham looks comfortable to us. He even asked the nurse's opinion if she thought he was in distress today. She did not think so. He did not require and sedatives or pain medications today. He was sleeping on his belly during our conversation. His nurse is pregnant and her son is due May 1st; a few days before Abraham was due. She is very nice and understanding. However I look at him and wonder "he would not being going through all this" if he was still comfortable inside my womb. At the same time there was knot in his cord and he might not have room to grow due the heart shaped uterus. For those of you that don't know us, I am 5'3 and Glenn is 6'1 so he probably would be have been a big baby. His oxygen level remained stable too. It is recommended to see how he can tolerate feeding and if he can breath on his own without the ventilator. He is getting 1 mililiter of breast milk every 12 hours and his ventilator settings will be lowered tonight to see how he tolerates it. If he does not tolerate the change in the ventilator then the settings will be increased again. We have decided to let him grow and "wait and see". We watched the new Veggie Tale, "The amazing Abe", we bought it a few days before he was born. It talks about patience. Abraham and Sarah had to wait to have the son that God promised them. I guess I need to "wait and see" how he grows and if God heals him.


No new information today, 3/6/09. He did have a CT scan however the attending physician was very busy and did not get an opportunity to update us. He did offer to stay late to discuss however we decided that it is better for all of us to wait. I honestly don't think the new CT scan will be much different however God can heal. I guess I would need to see absolute evidence. We left early tonight from the hospital and it's still after midnight and we are awake. It made me nervous to leave because his temperature was elevated, which is another function that is controlled by the brain, temperature regulation. Please pray that God will restore and heal his brain. He is such a blessing when he opens his eyes to our voices.

Friday, March 6, 2009

Celebration or a Funeral

Abraham had a CT scan 3/4/09. The attending physician (the boss of fellows and residents) sat down with us and gave us the most horrible news ever. The CT scan did not show evidence of much brain mass left. What I think this means is that the bilateral brain bleeds have caused significant brain damage that the body absorbed the tissue (the brain) because it was dead. This was 18 hours after the drain was placed so another CT scan will be done today 3/6/09. If this scan does not show evidence of "brain mass" we start asking ourselves "are we planning to celebrate bringing a new baby home in May or are we planning a funeral". This is bitter sweet. There's a country song about a women that ordered flowers for her wedding however the man was killed in war so the flowers were for his funeral instead. I sort of feel this same way however it's about a 1 month old baby that has been though so much. I question what the heck should we do. Should we continue everything knowing that his brain could be gone or do we stop and let him go to Heaven to be with God? I would feel guilt no matter what decision is made. We really need prayer and guidance. The doctors are not pushing us to stop everything, I am the one that questions this because I know the significance of the outcomes however I also know that God has performed miracles. I am having a hard time believing that God would perform a miracle for Abraham. I am not sure if this is the enemy (meaning Satan) causing me to feel like this. I asked Glenn the other night “how do I believe that God can heal him?”; then one of our phones made a sound and no one was touching the phone and no one was calling us. Also the beeper was in my pocket on Monday night and it started vibrating and the ICU was not paging us. This happened during a discussion with another parent when she was saying “what you don’t believe that God can fix what you have on this paper or what the doctors tell you”. Last night Glenn and I touched on this discussion again and the closet light in our room at the Fisher House came on and did not go off. This is just very strange unless its God’s obvious right in your face way of getting my attention. We are headed to bed. We got a sleep room at the hospital tonight with a bigger bed. We will have to check out of this room in the morning. Usually it is for mothers that just had c-sections and I am a month out. It’s so noisy in the other room that is why the nurse advocated for this room for us. I got to stand and hold him tonight. I was so scared when I held him because his oxygen level was very low however the nurse insisted that I hold him. She changed his bed while I held him. When he went back in the bed he was very comfortable and his oxygen level then was too high so she had to lower his ventilator settings (good thing). She advised that he benefited from being held even though it does cause some stress for him. Good night.

Wednesday, March 4, 2009

Eye Exam

Eye Exam, well that’s what they called it. Having watched the procedure; I am pretty sure this practice was banned in the Geneva Convention. I should have guess this was a painful exam when it started with a shot of morpheme. That was the first and last eye exam of a preemie I will ever watch, I was in pain just watching it. They not only pried the eyelids open but the skin around the sides (so they could look at the eyeball itself). There is no way I would have let a doctor do that to me. Well, the eye doctor said Abraham reacted to the light; so that means he does have some sight. His eyes are underdeveloped, but normal for his gestational age. His eyes will be checked every 2 weeks to check for development.

For having a hole put in his head (literally) yesterday, he was active today. He was actually trying to take the gauss off the top of his head, not a small feat for someone of his size. Karen will fill in with more ‘clinical’ information.

Tuesday, March 3, 2009

Surgical update 3/3/09

I just called the nurse. His blood pressure, hemocrit (red blood cell count) and urine output are down again. He needs another IV in case he needs a blood transfusion. I think this is a sign that he does not respond well to surgery. I did mention to the neurosurgery attending physician and the anesthesiologist, before surgery, that all that happened with the PDA surgery. They did not know if this would happen again since they "were not doing surgery on the heart". Hopefully he will pull through this. He might need blood pressure support medications again which can interfere with thyroid stimulating hormone (TSH) results. Oh by the way his newborn screen came back positive for hypothyroidism which can be attributed to the blood pressure medication, the physical stress (CPR) he endured or a true medical condition. Good news: he no longer requires pediatric cardiology care, weight is up to 3 pounds (hopefully healthy weight gain and not fluid retention),less ventilator support today and the breast milk supply is plenty. Wow it's amazing that a human being that weights only 3 pounds can have so many medical conditions. This child has endured more medical and surgical interventions in his first month of life than I have in my 34 years. The only major surgery that I ever had was the C-section. Please pray that he will recover from surgery and be his spunky self again, that the fluid on his brain resolves, blood pressure increases, decreased ventilator needs so he can be weaned to a less invasive way to maintain breathing and that he can have breast milk (we are running out of freezer space at the NICU and Fisher House). Glenn will probably take some back to Bremerton next week when he reports to work.

Surgery finally happened.

That’s right neurosurgery decided that it was time to take him today. He is in recovery right now. The neonatal resident and fellow had a long discussion with me last night after the neurology nurse practitioner went over the most recent cranial ultrasound results. The most recent results showed “cystic changes” which is attributed to the IVH (intraventricular hemorrhage).It affected the white matter of the brain which means that there is a high probability that he will have cerebral palsy. This was hard news for me to take alone at the hospital. However it was probably a blessing that the neonatology fellow and resident witnessed first hand the ups and downs in his oxygen level (could be a sign neurological sign rather than just “a normal preemie thing”) during our long discussion. Just to reiterate the “ups and downs” of NICU life, the type of surgery to be preformed changed about 30 minutes prior to taking him to the OR because he has a high white blood cell count which is probably related to the infection. He had an external ventriculostomy inserted. He has hydrocephalus which sounds more like a diagnosis rather than a symptom now which means that he will require additional shunts and revisions if infected or he grows. The current drain is external and temporary. He is going to be sedated for awhile so I will probably go back to the Fisher House tonight. I almost got to hold him today however the OR staff called right after the nurse was getting ready for this. Now that he has the external drain, which is sensitive to position changes I probably won’t be able to hold him again until after he has the internal one placed. Please pray that he does not get an infection, that he will not require the permanent shunt placed and that God will heal his brain. Sorry if this blog does not make sense I am very sleep deprived and worried.

Monday, March 2, 2009

1 Month old

I got to hold him today. The nurse positioned him so I could look at his face. He did open his eyes. He lasted about 45 minutes then his oxygen levels got too low. He might have the shunt surgery on Wednesday. It is still up in the air, depends on what the neurosurgery thinks, what the ultrasound results from today are and his blood cultures. He has had several "desaturations" AKA low oxygen levels so this could be a neurological sign or a sign that he was not tolerating his tube feedings. They stopped the tube feeding yesterday around 5PM. He might have reflux. Glenn is not feeling well so he left the hospital yesterday evening. I stayed here. He is still not feeling too well. I heard that a "bug" is going around the hospital right now. Hopefully he will feel well enough to come tomorrow. I sleep better at the Fisher House than the hospital. I checked on Abraham in the middle of the night. I thought I would find a baby fast asleep. Nope he was peeling the tape off his face and pulling the NG tube. I tucked his hand in the blanket however in the morning he was successful in pulling out the tube. Thankfully he did not pull out the breathing tube. He is trying though. I guess he figured "these people aren't feeding me any more so why should I have this tube down my nose". He left it alone when he was getting fed. Well I need to get some dinner. Hopefully it won't be so noisy in the sleep rooms tonight. It appears that some parents are smoking in the showers. I have noticed this a couple of times. Hard to believe that people would do this in a Children's Hospital. I can't wait for Abraham to be discharged home however this will be a long time from now.

Sunday, March 1, 2009

Stuck in an Elevator

Karen had just finished eating and we headed back down to see Abraham. We got in the elevator on the 5th floor to go down to the 4th floor. In the elevator, there was Karen, another lady, meal delivery guy with his cart of food, and myself. The door shuts and the lights for the floors we pressed went out, so we pressed the floors again and nothing. We tried again and nothing; the meal guy hit the alarm button and … nothing. So we opened up the call box and pressed the call butting the phone rang a few times and “You have reached Children's hospital, all of our receptionists are busy, please wait", everyone chuckled a little. After a few moments the operator answered and asked “Are you having trouble with the elevator?” I replied “Yes”. She asked “Where are you?” I replied “On Train #2”. She replied “Ok….” Then we got a dial tone and the phone rang again, and again and then “You have reached Children's hospital, all of our receptionists are busy, please wait" after a few more moments a different operator answered and asked nearly the same question if we were having trouble and she said someone would be right out. After a few more minutes there was a voice on the other side of the door that said “Are you ok in there?” Someone replied “we are fine. The guy on the other side said: “I’ll have you out in a minute”. The door jostled here and there for a few minutes then quite, so I jokingly asked “you haven’t giving up on us have you”… I did not get a reply, so I said “I will take that as a yes”; this caused someone else to laugh. At some point in time I said “At least we won’t starve” as there was a full cart of food in the elevator. So after a few more minutes the lights flashed and the bell rang and the doors opened. We all got out in a very calm manner on the same floor we got in on. Then, this rather impatient man rushed into the elevator; I told him at least 3 times that we had just gotten stuck in that elevator before he realized what I was saying. So we got in another elevator and went down.

Well, that being said:
Abraham is doing well (for his condition). He is up to 3cc of milk every 3 hours (very, very good). He got the bandage for his PDA (heart surgery) off today and the wound looks good. The date for his surgery to install the shunt in his brain keeps getting pushed back for various reasons. Right now it MIGHT be on Tuesday. Things change on a daily basis. Don’t worry; Karen will add more stuff later.