Medical Unit Life

Abe has been on the medical unit since Thursday. It has been a very stressful transition. Some things that he made it stressful include new doctors and nurses, I stayed one night at his bedside and did not sleep, the whole high oxygen concentration and the immaturity of his eyes and the breast milk policy. The policy changed on breast milk storage from 48 hours to 5 days in the refrigator if fresh pumped. The policy changed in March however the nurses on the regular units deal with all ages, newborn to age 21. The nurses here were putting all the milk in the freezer. Freezing breast milk destroys the white blood cells. Fresh milk is better for him because if there is virus or illness going around the hospital the mother will develop protective antibodies against it and pass it on to the baby. Also fresh milk is easier to work with, no need to wait for de-frozed milk to be ready for use. They put him on "medical air" at 21% oxygen concentration which is air flow up his nose with oxygen prongs however he still is having episodes of low oxygen. The nurses rush in and put him on blow by oxygen and leave the room. I ended up yelling at the nurse today because I found him on blow by oxygen and his monitor showed 100%. He is awake now so I am going to hold him.

First day out of NICU

I did not sleep at all last night. Abe let out little cries and his alarm went off all night long. Also the sister of his room mate cried. I don't feel as comfortable pumping at his bedside either. We are by the door near the unit clerk's desk. The other patient's mother, father and baby sister stayed with him. I talked to his family. He is a former premature baby, 25 weeks gestation and he had the brain bleeds. He is 4 and has CP. He can crawl, speak a little bit and eat however he has developmental delays. When I see him I think of how Abe will be at that age. It breaks my heart. This boy interacts with his world so hopefully Abe will too. If he is similar we are going to have to be very patient as a child with special needs will require extra time and care. I did get a little sleep at the Fisher House however not an adequate amount. I am so emotional now because of lack of sleep. I am also concerned about his eyes. A nurse's aide gave him an oxygen blast when she saw him at 87%. I told her that this is normal for him. I am concerned that nurses will give him high oxygen levels even though this is bad on his eyes. All they see is a baby who needs more oxygen. We did move his "low oxygen requirement sign". He has been off the oxygen for 2 days now. I am feeling very guilty about leaving him tonight but I am too emotional to stay tonight. Glenn is much better however he is not healthy enough to visit.

NICU Graduation

We are on the medical unit now. No more NICU for us. It seems so weird to be able to eat next to him and not have to check at the desk every time I come back. The NICU required that the clerks ask the nurses if you could go back to see your child. Now I just walk right in. Well after geling my hands with purell. He is having episodes of low oxygen level however he always did this in the NICU. I am going to head back to his room now. The nurses and doctors are getting to know him. I think the lights and the other patient's TV was bothering him. Glenn is feeling much better.

No more oxygen

Abraham's eyes are still immature which means that he is at risk for ROP if he is on high levels of oxygen and his blood oxygen level is high. His next check is in 3 weeks. The medical unit can only deliver 100% oxygen concentration with variable flow. He really does not need to stay in NICU for 3 more weeks. The respiratory therapist came up with the idea to give him 0.1 liters of 100% oxygen (was on 1/2 to 1 liter over the last few weeks on 21(room air)-40%). The floor nurses can only change the flow not the concentration. Today they put on 0.1 liters with 100% oxygen concentration, his oxygen level was too high (could hurt his eyes) so they took oxygen off him completely He even did binky training without oxygen. I was very nervous to leave him on no oxygen at all, in fact the nasal prongs (delivers oxygen in the nose) fell on the ground so I threw it away. The nurse got a new one however she did not open the package. This could be a sign that he won't need oxygen at all. This would be one less thing to worry about. There are other babies in NICU for 8 months that had to have trachea tubes placed due to breathing difficulties. Abraham appears to not need assistance with breathing. He is still on NG tube feedings, 23 cc per hour (up a little). He is coughing and showing signs of reflux. I heard this is normal for all babies however he has it frequently. This does cause him to have some breathign difficulties however this would probably be the same for anyone. Since his feeding is by NG tube he can not control how much is in his stomach at one time. He has had some serious gas too. One thing I am concerned about is he keeps his legs tucked closely to him which could be an early sign of cerebral palsy. It's still too early to tell. He passed his hearing screen. Yesterday 5/5/09 (original due date) he got to try to breast feed. He breathed well but forgot to swallow everything. The OT took a picture of us and gave me a copy. He looks like a normal baby. He seems to look like me, not sure if that is good or bad. He still a way to go before being discharged home however is closer than he was 2 weeks ago. On a different note Glenn is feeling better since he was on antibiotics for bronchitis. He doe not have the flu.

5/2/09

Abraham had a spa night tonight. That's right complete with bubbles and lotion massage. The nurse connected a tube to the oxygen hook up and placed it in the water. He loved it. It seemed so weird for him not to be connected to all the monitors. I felt like something was wrong. I was so nervous and was constantly watching him for color changes and signs and symptoms of respiratory distress. He did not show any major signs however I think his oxygen level went a little low however he recovered back. quickly. I guess it's because he usually is connected all the time and most of my experience with babies is when they are in the hospital. He does not have very good head control however I don't think healthy full term babies do either. It's difficult for me to know normal for abnormal because I have always worked with ill children. Ill children tend to regress back in developmental stage a little bit. He is strong though, he pulls out his feeding tubes and oxygen and moves his head from side to side. The nurses are actually paying attention to when his oxygen level is too high, (this can cause the ROP and lead to blindness), since oxygen requirements and immaturity of his eyes are what is causing him to remain in the NICU. I find this very interesting that they are willing to be bothered by this now and not before. I have been telling each nurse daily for over a month, his oxygen level is too high and he already has stage 2 ROP. I even told a resident and charge nurse a few days back and the day nurse today changed the settings. This means that if his oxygen level is high, greater than 96% it will alarm to notify the nurse to that the F102 (oxygen concentation) can be turned down. Yes it's very annoying to be bothered when a baby has high oxygen levels however the nurses that have cared for him won't be taking him home and dealing with life long disabilities such as blindness. A few understand this however until they are faced personally with this issue I don't think some of them will ever get the point. Don't' get me wrong he has had some wonderful care from nurses, respiratory therapist, social workers, doctors and child life therapist. Working in the NICU must be a difficult thing to do however a great staff member listens to the parent's concerns and considers their imput. This might sound weird but when I washed his clothes tonight I saw my first poop stain. For the longest time he was in just a diaper with no clothes. I thought the warm water would have got the stain out. I plan to use Oxy Clean on it later when we are at home. Oxy Clean worked great on Glenn's white t-shirt that turned black when he wore down to the boat in San Diego when he was called in late at night. He is still very sick. I did my best, by phone, to determine if he needed to be seen by a doctor. He is doing a little better but he describes it as the "worse cold I have ever had". Some friends brought him some soup. Thank you so much. I feel torn that I can't be there to take care of Glenn however Abraham needs me to stay healthy since I am his food source. I got concerned about the Flu since Washington State might have been exposed. I have not kept up with the news about actual confirmed cases. This week I went to a mom's group at a church in Bothel and had dinner with ladies from my home church in Bremerton. Thanks for letting me come to the moms group. Also thanks for coming from the other side of the water to visit Abe and have dinner. It was fun. It still makes me smile to hear about Katie's youngest child flushing the toliet and watching the toliet paper go down. That is so cute.

4/30/09

Abraham has made progress this week. His weight is up and down but he fits newborn clothes and looks healthier. He is still on continuous NG tube feeding 21 cc hour however he is doing better with Binky training if he stays awake long enough. He is crying less when he sleeps too. I think the reflux was really bothering him however he is on medication for this. This thyroid level is in normal range and he is a little bigger and older so temperature control should be stable. There is a NICU term "little wimpy white boys". Apparently premature boys of Caucasian decent are typically in the NICU longer than girls or boys of other ethnicity. Not sure why however nurses that have been NICU nurses for 30 years see this trend frequently. He is almost all long as the isolette mattress so it's time for a "big boy crib". He kicks his blankets off and they find his feet at the end of the isolette. He is going to be a very active, busy little boy. He tries to seek out the breast however gets frustrated because he is not able to eat this way. However his nurse today felt that this was a good sign that he might breast feed in the future. She recommended more practice. She also told me to go to You tube and search NICU cribs. Ther eis a funny video about the isolette. While at that website I also found: http://www.marchofdimes.com/prematurity/21295_10699.asp. I think my sister told me about this before however my brain was on overload. He had an episode of low oxygen, in the 40s and turned gray when he fell asleep in my arms. This was scary and she had to turn his oxygen way up to 60%. He recovered quickly however he still requires medical intervention. I am so nervous about him being transferred to the medical unit because the nurses have 3-4 patients at one time. He is not ready yet but is getting one step closer. He will will in an open crib when I come back in the morning. His next eye exam in next week. Please pray that his ROP has not progressed. I met a nursing instructor from Seattle Pacific University on the elevator. She asked me some questions about the picture on my parent badge (Abe's picture) and I told her about him and how difficult it was because I know too much because I was a nurse with a master's degree. I also told her that I considered nursing education. She had me speak to her students during their lunch meeting. I was able to maintain a professional demeanor and not get emotional while discussing my experience of having a premature baby in the NICU. In other situations I get very emotional or influence other people to cry. After her students left she told me that I would be an excellent nursing instructor. She is a clinical instructor and a nurse practitioner. She went to UW like I did. In the future I do see myself seeking an educator role however right now I feel that my family especially Abraham needs my undivided attention. Glenn is very ill. He sounds awful when we talk on the phone. He is not sleeping because of coughing and congestion. He also has a fever and body aches too. He is not one to ask for help either however I arranged from someone from church to bring him some juice and soup. I don't think there is a lot of food in the house in Bremerton. If I was home I would take care of him but I can't be there. The nurses are advising me to take care of myself and stay healthy so I can take care of Abraham. Glenn will be staying in Bremerton this weekend. Hopefully he will be well next weekend so that he can come back to Seattle. Please pray for Glenn, my sisters, one had surgery and one lost her job. From what I heard from some travel nurses in the NICU nurses are having difficulties finding jobs in Washington.

When will this be over?

I have had a very difficult time emotionally lately. I hear others say how strong I am yet I don't feel that way.I am running low on coping skills. I even yelled at a nurse tonight. Over the last several days he has had many different nurses that have never had him before. This is frustrating since I asked for primary nurses. He had a consistent nurse on night shift however she moved back to Canada to be closer to her family. The mother is his old room mate liked her too. I have dinner with the other mother. She is very strong from what I see. She even lost one of her twin boys. I never see her cry or get angry at the staff. It might be a cultural thing too. He had a nice day shift nurse yesterday and today. His nurse today can not primary since she only works one day a week. She is a mother of 4 children. They attempted to lower his oxygen flow from 3 quarters of a liter to 1/2 liter. He did not tolerate this too well so they put him back up. Also he went from being on 21% oxygen (room air with air flow) to requiring up to 40%. His eyes are still immature so he is still at risk for blindness. He was started on medication for gastric reflux which seems to be helping a little bit however he is still having symptoms. His feeds are continuous still rather than bolus feeds (more like regular eating, every 3 hours). He had a bladder/kidney scan, VCUG, which showed no evidence of kidney reflux (urine back flowing into the kidneys. One thing that is frustrating is I am there every single day and I had no idea that he was started on antibiotics as a precaution on Saturday for potential kidney problems. Glenn does not remember being told this either. I knew from the prenatal ultrasound that his kidney was enlarged. I also did not know he was having a VCGU until the transport team showed up to take him there. The nurse did not think that I could go with him however I insisted and was able to stay with him the whole time and talk to him. The procedure involves inserting a catheter into the penis and filling the bladder with dye then checking on the computer screen when he voids if the urine refluxes back into the kidneys. Thankfully his scan showed no evidence of kidney reflux. Kidney reflux can put at an increase risk for bladder/kidney infections and difficulties. There are many people in my family with kidney problems including myself. He is still getting bigger. He grabbed his pacifier yesterday and took it out of his mouth all by himself. It was very cute. He also gets out of his blanket and gets down the end of the isolette. He has been sleeping during the day and awake at night. We are going to work on getting him turned around. My friend that is due May 8th, 3 days after my due date, might have to have a c-section this Friday because the baby is breech. Please pray that the baby will turn around as she wants an all natural labor and delivery. It feels weird that my due date is 1 week from now however my baby was born 12 weeks ago. I actually thought he would be late and be born on Mother's Day. Oh well there is some reason why he came so early. I heard in a song today that reason(s) why we go thru stressful, difficult and painful stuff is not always revealed until you have lived thru it. I am learning to be more assertive in this however I don't want to be too pushy. It think it was "Cowgirls Don't Cry". This song encouraged me to be strong however I also know that holding in emotions all the time is not good on your health. It can cause high blood pressure, ulcers and other problems. At the same time there is appropriate time, place and way to let the emotions out.I miss the people and sunshine in San Diego.

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.

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.

3/19/09

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?

3/18/09

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.

3/17/09

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.

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.

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.

3/13/09

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.

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.

3/10/09

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.

3/9/09

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.

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.

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.

3/6/09

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.

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.

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.

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.

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.

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.