4/25/09

Abe is not tolerating his feeds, he is having low oxygen and reflux. I have been telling them for a few weeks that he was refluxing however no one listened to me. The responses varied from, "yeah he probably does, most babies do" to "well when parents watch their baby for 6 hours a day see a lot of things". I noticed in that he coughed and had milk in his mouth during his feeds. There was inconsistency is in administering the feeds from 45 minutes to over an hour. Finally the doctor ordered for them to be over an hour. Now he is on continuously, 21 cc per hour which is still 16 oz daily however he won't get the full/empty stomach feeling. This will make it more difficult in the future for him to wake up to eat. On a more positive note he can do Binky training twice daily now if he is awake, his respiratory rate is lower than 60 breaths per minute and he does not have any signs or symptoms of respiratory distress. I am so concerned that he will require tube feedings to eat. I envision that he will need a permanent tube and won't be able to eat like a normal person. What is the quality of life then. We don't know this yet however he is now 38 weeks gestation and I am expecting to see what other full term babies would be doing. I am also worried that he will be over 6 feet tall and weigh over hundred pounds as a teenager. How the heck will I take care of him when he gets to this point. What if Glenn is deployed somewhere. Yeah babies and small children are cute even with special needs however the reality is he will grow up and some day be a adult. Will I have a life long commitment to care for him and will I be alone to do this? He has a PICU (pediatric ICU, not NICU) nurse today and reassured me that he sucks on his binky and took the 5 cc of milk by mouth. She said some babies can not even do that. She saw this as a good sign. She also mentioned to take small steps. Glenn is holding him right now.

New oxygen

Abe was switched to conventional oxygen today at 2 liters then the nurse switched him to 1 liter. I think he should be on 2 liters however the respiratory therapist on night shift was going to check with the nurse about this. I am not sure if this is a nursing judgement or a definite doctor's order. for the liter flow. The oxygen concentration was at room air 21% until when I held him during his 8PM feed. He had another A & B, heart rate 85 and oxygen saturation read 65%. I got very scared when the monitor showed further decrease so I pulled the curtain and started to get up out of the chair to give him blow by oxygen. Luckily the nurse came in so I did not have to give him blow by oxygen. She increased his oxygen concentration to 30%. He can not be transferred to the "floor", (regular peds unit) until the vessels in his eyes are more mature and he has less A's and B's. On the floor conventional oxygen concentration would be at 100% which is damaging to the developing eye blood vessels. ICU nurses have more autonomy than a "floor nurse" does. Since I was a hospital floor nurse and not in the ICU I am not sure. I do know that oxygen is considered a drug and requires a physician order (unless this has changed). I have not been a hospital nurse for 4 years. I thought his scrotum looked swollen however no doctor checked it while I was there. The fellow stopped by to talk to me about it however I was holding him and he was asleep. Also he received a phone call and never came back. I need to check on his in the morning. After everything he has been thou hope that nothing is going wrong with his boy parts. He has a new room mate because the other boy needed eye surgery. His mother stopped by today and she really wants to move back in the room with Abe however he might need surgery again so he will remain in a private room. He is next door in Abe's old room. The new family does not understand English so it's difficult to communicate with her. However the mother of the previous room mate stops by to translate. The mother and father that disagreed on the feeding tube placement surgery for their son came to an agreement today after the doctor called the father. The child will have the surgery done. This child has been in the hospital for 8 months. He had a major heart defect that was missed on the prenatal ultrasound. Shortly after he was born it was discovered and he has had many complications related to blood flow to his gut so some of the intestinal tissue died. He was born at 35 weeks gestation so almost a full term baby. Glenn and I have came up with some great ideas with the whole pumping thing. It started with a stop watch that I wear around my neck that way I can set it to monitor pumping time and see how long it's been since the last time I pumped since hospital clocks don't always work. I use a nursing cover when I pump at the hospital so that nurses and staff can take care of him if needed and I am completely covered. I also bought one of the dishwasher safe bins for bottles to rinse the pump parts at the hospital (this keeps them securely in one place so that I don't drop them in the yucky sink or worse the hospital floor). Night time ideas: I clipped a book light on the pump so at night I don't have to turn on full lights (turning on lights to use the bathroom at night or in this case pumping sends signals to your brain to wake up so dim light is recommended), I have 2 clean sets of pump parts before I go to bed that way I use one set it aside in pink hospital bin then use the other one then clean and sterile when I wake up for the day. Wow maybe I should get certified as a lactation consultant. I think I will share some of these ideas with the other mothers. Most of them are concerned that they are not successful in milk production. I am still debating on the milk bank donation however my heart is telling me that other NICU babies somewhere could use it. My baby certainly has done very well on it. Seattle Children's does not accept breast milk from the milk bank. Some California NICUs do and that is where the milk bank is. Apparently two ounces of breast milk is very expensive.

Forgot to mention

I don't know if I ever said in the blog that Abraham not only had bilateral (both sides of the brain) grade 4 interventicular hemorrage (brain bleeds) but that the CT scan also showed periventricular leukomalacia. So far he does not need a shunt placed. I am too tired to read about this and translate to laymans terms at this time. The term can be googled if you want more information however be careful what you find on the Internet. I would stick to National Institute of Health or another medical website since as the Institute of Neurology. I was able to hold him twice today for a little while. He just needed to be in warmer clothes and have the isolette temperature raised. I am still concerned about this temperature. Premature babies have low temperatures with infection rather than a fever. However he has no evidence of infection. The resident really can not explain it other than it's a neurological problem and he is a little behind in development. This is hard for me to swallow since he is 7 pounds 2 ounces and 21 inches long (definitely the size of a full term baby). He does have a thyroid disorder (still unsure if it temporary or permanent) and I know that this can effect temperature regulation however the resident does not think this is causing him to not be able to regulate this temperature. Her advise was lets let him grow a little more. Other full term babies go home weighing this much or less. Are normal full term babies constantly buddled up in lots of clothes, hats and blankets all the time? Probably not because they get baths occasionally and lay in cribs without many blankets at due to the risk of SIDS. It is not recommended to that babies at home are wrapped in blankets while alone in a crib because they can cover there faces and breath in carbon dioxide which increases the risk of SIDS. There are many other causes of SIDS however this is a risk factor. His eye exam showed that his right eye is maturing (good) and that his left eye is still immature. He still has stage 2 (mild-moderate ROP) however it has not progressed to more severe stages. I think he can hear and see me because the eye doctor said he is trying to look at mom during the exam. I stopped talking so that they could do the exam. On a different subject Glenn discovered that rice/veggie steamers can be used to sterilize bottles and breast pumps parts. This saved us money and the hassle of finding space for it at our house. The one that I almost bought was $89.00. Since the product is marketed for baby bottle/breast pump parts that increases the price. I have so much breast milk at the hospital, Fisher House, our house and Katie Carters house that I am considering donating to the milk bank. Does anyone have any suggestions or experience with this? Glenn does not eat dinner very often because he has no freezer space to put food. It's completely full of milk. I started pumping less for 2 days then got concerned that I might not be able to meet Abe's needs. He is on 2 ounces plus 2 cc every 3 hours so 16 oz daily. Please pray for a new mother that found out her baby has down syndrome, a baby that needs the eye surgery due to ROP; 40% chance of blindness and a mother who has been at Children's for 8 months. She and the baby's father are in disagreement over whether or not to place a feeding tube. The father is 3 hours aways with their other child therefore the mother is alone at the hospital. She is considering just signing the paper and letting the doctors put it in however he does not want this. Having a sick child or one with chronic medical issues not only is physically and emotionally draining on a person it can tear relationships and marriages apart.

Sick of Hospital life

I am so sick of the hospital, the food, the inconsistency in nurses and the smoke in the parking garage. Sorry to vent I am just tired of being away from home. We decided to cancel the remodeling plans completely because one room was going to cost $70 thousand. We are out a little money for the planning and blue prints. We decided that to do the the re-modeling ourselves. This will be Glenn since Karen does not have a clue how to re-model. We felt it was best to cancel due to the cost, we don't know if Abraham might need a house that is wheelchair accessible and we don't know how long we will be stationed in WA. His temperature is too cold today so I can't even hold him. We just put him in warmer clothes and re wrapped him in a blanket. This is very upsetting to me since I saw a mother of a young baby in the cafeteria giving her baby a bottle, "bottle propping" while he sat in the carrier. I should not judge others but I feel that babies should be held especially while being fed. She was not even looking at the baby during this time either. I thought I was dealing with this better however as my due date approaches I am getting very sad. I would much rather have him inside of me growing than put him thru everything that he has had to deal with. I also wish that I had more control over the experience however I did not. I had to have an emergent c-section and deliver him 14 weeks early. There was no choice in any of this. The only choices I had were to let the medical professionals continue CPR or not and what hospital for him to go to for the PDA surgery. I usually hold Abe 1-3 times daily however today he is too cold. The nurse is going to see if he will warm up enough and she will even get a warming blanket so that I can hold him. He just does not seem like himself today, not fighting as much. I am concerned that since he would be a full term baby that evidence of damage to the brain is showing up. His eye exam is soon so please pray that everything turns out okay. Sorry to be so emotional I am just feeling that it's not fair that my son is so sick and other mothers and babies don't have to go thru this. I understand that some babies spend a week in the NICU however we have been here almost 3 months.

Six pounds plus

Abraham's weight is up to 6 pounds 12 oz. His oxygen requirements have decreased over the last week, he is between 21% (room air) and 45% depending on what is going on with him. He is still on high flow oxygen (helps keep his immature air ways open and stimulates him to breath). He is on 2 liters, was on 3-4 liters last week. This is good. His head size is up 2 cm in 10 days which is either good or bad growth. Typically it is normal for a baby's head to grow 1/2 cm to 1 cm a week. His is growing too rapidly however his whole body was too. This could mean that he needs the shunt placed. He had a ultrasound of his head done yesterday. I don't know if there were any changes or not. He is on straight breast milk, 2 ounces every 3 hours with the NG tube. He is still doing Binky training once daily. He takes 1-5 cc (1 tsp is 5 cc) of breast milk during this. he has a very long way before he can breast feed or even bottle feed like a normal baby. However he is currently going on 37 weeks gestation so he is considered a "term baby" now. Glenn is currently holding him. He tolerates being held more often. He is on caffeine still, thyroid medication, calcium, sodium phosphate and iron daily. I am going to check on his ultrasound and if he still needs the thyroid medication. New pictures will be updated later.

Our 6 pounder

Abraham is growing so fast that today they took the supplements out of the breast milk. However he is getting calcium, mulitple vitamin with iron and phosphurus (breast milk does not contain adquate amounts for premature babies). Apparently it is rare for a premature baby to do well with straight breast milk. His tube feedings are up to 51 militers every 3 hours. He is still 19.7 inches and his weight is up to 6 pounds 6 oz. Some full term or even post term babies weigh about this amount or a little less. He is closer to being a term baby however is 36 weeks gestation, so still not supposed to be here yet. He is not strong enough or stable enough in his respiratory status to take the breast milk by mouth. In fact he only takes 1-3 militers by mouth daily with binky training. So he has a long way before he can breast feed. He is still in NICU because he requires high flow oxygen and required CPR twice in 12 hours on Friday. He is still in an isolette however eventually he will be able to maintain his own body temperature and do fine in an open crib. The nurse joked and told me that he would still require an isolette when he is 18 years old. He is on 3 liters of high flow oxygen and the Fi02 (oxygen percentage) is between 28-34%; Room air (air that we all breath) is 21%. His oxygen requirements are lower than before however still higher than what a regular pediatric unit would accept. When Lynn the occupational therapist returns she plans to push him a little when a lot of fluid at one time during binky training to see if he can tolerate it. She can only do this if he is breathing well. His work of breathing is not as labored (he was working very hard to breath). When he goes home he might be on tube feedings either nose to stomach (NG tube, short term use, risk of aspiration of fluid into lungs) or have a surgically inserted gastric tube, AKA G-tube (long term use). We just have to wait and see how he does. He also might go home on oxygen however it would definitely be at much lower level. The thought that I might have to do CPR on my own son scares the heck out of me. I plan to take CPR again before we leave the hospital. They won't transfer him to a regular pediatric unit or discharge him home until he is a lot more stable. He still has episodes of A's and B's, (what medical professionals call it) heart rate decreases (bradycardia) and his oxygen level goes low (Apnea )(absence of breathing). Sometimes he brings himself up without intervention other times it requires a little bit of stimulation such as talking or touching him. A couple of times on Friday he needed CPR. He sometimes starts crying when he is sleeping or appears to be in pain. I wonder if NICU babies suffer from PTSD (post-traumatic stress disorder). This would be a result of multiple medical intervention and noise exposure for extended periods of time. I am also curious if former NICU babies are more laid back, have higher pain tolerances and are easy going with future medical appointments. If I was a grad student again I would do my thesis on this. I might research this on the Internet to see what I can find. There are some new pictures of him posted. He has on an Easter outfit that my mom sent him.

4/11/09

Abraham has had some set backs. He is back in an isolette because he can't regulate his body temperature; He was getting too cold. He was on 4 liters of oxygen; was on 2 liters for several days. The lower the oxygen liter flow the better. Caffeine was re-started because he was having episodes of not breathing that required CPR ( breathing part, not compressions). He was self recovering however he required to be "bagged", CPR twice yestersday. It was very scary to see his oxygen level in the 50's (should be 88-93%) and heart rate in the 60's (should be over 100). He was gray and not moving and did not start breathing again despite: uncovering his blankets, touching his chest and talking to him. The only started breathing again with CPR. He started crying and moving his arms around again so the nurse was able to stop CPR. They think he might have a bladder infection however at this point they are not starting antibiotics. They are waiting to see what the culture says. If they do he might need an IV again. They might also try oral antibiotics. Infection in premature babies can be a cause of difficulties with temperature, breathing and heart rate. Sorry if this is not making sense right now, I am using a computer at the hospital and the kid on a computer next to me is listening to abnoxious music that is annoying the heck out of me. Glenn is currently holding Abraham right now so I am taking a break. So far today he not required CPR.

Please pray

I am having car problems and it was very stressful taking it the dealership 13 miles away. I was not sure if I would make it or not. I had to use my hazard lights since I could not drive more than 30-40 miles per hour. I did not get hardly any sleep last night either. Abraham temperature is on the lower in the end in an open crib and he is requiring more oxygen today. The higher oxygen requirement is to compensate because they had him on 6 liters yesterday. He is now on 3 liters instead of 2. Please pray that he will be monitored closely and that I don't get too angry about the error. Also pray that no major errors or over sites occur in his care. It seems that many errors are occurring that can affect his outcome. Other mothers have also shared the mistakes that have occurred with their baby's care. I need to forgive however it's very difficult when major errors are happening with his care. I feel like I should be there 24/7 to make sure this does not happen again. However I need to sleep, eat and get fresh air.

Eye examination

He had his eye examination today. I was not present but the other mother said that he cried. His eye examination was not good this time, stage 2, zone 2 which means potential for blindness. This could be related to high oxygen saturation. I am beating myself up because the parameters for the alarm to sound off for oxygen saturation was 100-80 for a long time when actually he should be between 88-93%. I have asked nurses in the past why is it set like that? One response was, "we can't be here for every bing and bong or we would be in here constantly ". I have questioned several nurses however I was not pushy or assertive enough to have it changed for tighter monitoring. When the nurse said "we can't be here for every bing and bong" I should have said, "you are not going to be taking him and be dealing with a child who might be permanently blind because the nurse did not want to answer every alarm due to high oxygen levels. (High oxygen levels in premature babies damages the blood vessels of the eyes and can lead to blindness. They nurse could wean his oxygen level if he has high oxygen levels to prevent this from happening. He was stage 0 (very mild) two weeks ago. Also today the night shift respiratory therapist found him on 6 liters of oxygen, he should be on 2 liters. He is in an open crib and there was potential to wean him off high flow oxygen to regular oxygen in the morning. Given the 6 liter of oxygen error today the night nurse going to advise the doctors not to make this change. I did notice a strong air noise and wheeze, even had the nurse listen to him but I never asked "how many liters of oxygen is he on?". I feel like I should be there day and night to be his eyes and ears since errors happen. However I need to take care of myself too. Also on my drive home tonight the Jeep acted up, could not drive more than 40 miles per hour. It felt like it was going to stall and a light came on. I am not sure where to take it to be fixed over here. Thankfully I made it back to the Fisher House safe and sound. God is watching over me. Well I am waiting for my laundry to dry then off to bed. I was going to check out a mom's group at church however I need to deal with the Jeep instead.

Dimples

Abraham has the cutest dimple on his check. He is doing "binky training" daily. The occupational therapist recommended getting him familiar with the breast since this will be his food source some day. I did this tonight when I held him I almost felt that I was doing something that would harm him. I questioned what if he latched on and aspirated some milk into his lungs. He is still learning the whole suck, swallow and breath aspects of eating. His suck was pretty weak however he was falling asleep and he had an immunization to prevent RSV (respiratory virus); Therefore no milk came out. Thankfully RSV season will soon be over. I toured the medical unit today. There is more window views and two parents can sleep at the bedside. Some rooms have smaller pull out beds than others. There is limited storage space for breast milk too however the charge nurse said that she would figure something out. He is still having low (A's and B's, apnea (low oxygen level) and bradycardia (low heart rate). This occurred mostly after his tube feedings however also at random times too. Some times he self corrects and sometimes he needs simulation to remember "you need to breath". Suzanne (Navy wife) made and sewed on little labels on his clothes. The labels are so cute. She came to meet Abraham today and brought cookies, yummy. Hopefully I will save some for Glenn. He passed the hearing screen however will require a more advanced one later. His eye exam is in the morning. Since he does not have any IVs he won't be getting morphine this time. They will give him his binky dipped in sugar water. I think I should be there to assist and comfort him. Maybe they will give him tylenol too. On the premature baby growth chart he is 50th precentile for weight and 90th for height. Like I said before tall and skinny. They decided that he did not need formula added to the breast milk. They still add a few supplements though. His roommate's mother started asking me questions about pumping breast milk so I advised her to ask for lactation consultant. English is not her first language so there is a bit of a language barrier for her. I let the nurse know that she had some questions. I was glad that I was able to help her. I think she feels more comfortable speaking to other mothers than the staff. Please pray that the eye exam is not painful and that Glenn is coping well. The re-modeling cost was estimated at $160 thousand. So now we are only going to re-model the kitchen and put down new flooring. Hopefully his works in our budget. I really want a dishwasher however we would need to space for this. Also if Glenn receives orders to move and/or Abraham needs a wheelchair some day the house would need to be wheelchair accessible so why bother with major, expensive remodeling. I think Glenn is having a hard time with this because he promised me that we would expand the house so that it's more liveable for a family. Please pray for me to be thankful that Glenn has a job, Abraham's has great medical coverage and that our house will meet our family's needs.

Growing Baby

Abraham is 5 pounds 8 ounces and is 19.8 inches long. So basically he is a long, thin baby. Gee his daddy was probably the same way. He is getting a belly on him though. (Glenn will upload new pictures some time this week). He is up to 48 mililiters of breast milk plus additives every 3 hours. Even though the breast milk is high in calories they still add formula to it. I plan to talk to the dietician on Monday to determine what it means to be positive fatty acids on the stool. In case I did not mention this earlier he came back positive for this on Friday. No one over the weekend seemed to know what this meant. I hope that this is a not sign of milk allergy. From what I remember diarrhea and malabsorption are signs of milk allergy. It would be hard news to take if he can't have my breast milk. I have worked so hard for 9 weeks now to maintain it for him. He still requires high flow oxygen and an isolette. If he is stable in his temperature and respiratory status he will have his first tub bath this week. All his other baths have been bed baths. I am curious to see if he likes being in water. His daddy loves being in water, well if it's warm like Florida or Guam. He loves to dive and went a lot when he was stationed in Guam. Also Glenn obviously must like water; he has been a sailor for 15 years. On a side note during his first deployment the wives talked about sending mail to their sailors, I said "my husband is not a sailor, he is ... (I gave his job title). I had no idea that everyone is considered a sailor. I did not grow up around the military other than my brother that joined the Air Force when I was in the 3rd grade. The most I learned from that is that he joined, wore a uniformed, mailed us letters and pictures, went to the Gulf War and I did not see him again I was 30. He is still in the Air Force and is stationed in Japan. I last saw him when he came to my graduation at UW in 2006. Glenn took a late ferry back home and is currently still in route home. I am watching TLC, a c-section. I have never watched a c-section before wow no wonder I was in a lot of pain afterwards. This mother got to touch her babies; I did not get to touch Abraham until I got to the NICU later that day. This women is having 4 babies, 11 weeks early however they planned her c-section based on something with the cord for one baby that probably would have taken her life (I missed this part). I still wish that Abraham was born at a hospital with a NICU however I can not erase what happened. It just seems that his complications would have been minimal. Some days at Children’s he was not even stable enough to down the hall to CT scan. There was no choice but to transport him by helicopter to Madigan the day he was born. Bremerton Naval Hospital does not have a NICU. I did not know this the night my water broke. All I knew was that I needed to get medical attention and Bremerton Naval Hospital was the closest and where my care was getting set up in Washington. I was not expecting to have a baby that night.

4/3/09

Abraham's current weight is 5.5 pounds. However they really want him to grow rapidly. He is still on high flow oxygen, 2 liters. He has done "binky training" over the last 4 days. The occupational therapist is very patient and kind. She took time to teach me however how to do it rather than just do it herself. He did the best on the first day however he was still on 3 liters of oxygen. He took 2. 5 cc today however he only had low oxygen levels once during this time. I have learned to watch for his cues if he is ready for more milk or he needs a break. She gave me the okay to work with him over the weekend. I just hope his nurse listens to me and lets me do this. If he needs this it's better for a parent to learn and do since we are ultimately responsible for him. He has good days and bad days. It's almost as if he depends on the nurse. He might response well to some. Glenn was here today for the binky training session. I held him everyday this week. He seemed to do the best when he was skin to skin after binky training than when I held him in blankets. The highest calories per ounce that my breast milk was 31.6; the lowest was 20 calories per ounce (5 AM breast milk). This proves that the calorie and fat content is higher in the afternoon and early evening and lowest in the morning. Also not all breast milk is 20 calories per ounce. However despite all this effort and a dietician willing to do this they still feel that he needs the extra stuff in addition to breast milk to give him the fats and other substances that breast supposedly does not have. What is interesting is they are looking at the fat in his stool to determine if he is metabolizing the fat or not. His stools are very foul smelling which I attribute to not absorbing some of the additives to the breast milk. His stool was negative for reducing substance (sugar in the stool) and negative for fat however they were positive for fatty acid. I still need to find out what his means. Glenn might spend next weekend getting the house ready for the contractors to do the re-modeling.

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.

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.

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.

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.

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.

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.

3/23/09

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).

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.