Got Milk???

Abraham is trying to breastfeed. He is getting more successful each time however he still fusses a lot and gets frustrated. He did very well tonight. However I was advised not to adjust the amount of tube feed when he nurses so I gave him the whole 75 cc and he just puked. He breast fed for 1/2 hour. Despite throwing up he happy even though it was a little more than the average spit up. He has another doctor's appointment. I plan to mention this and get their advice. He wakes up before his tube feeds, sometimes an hour or 1 hour and 20 minutes before schedule. He has some normal newborn reflexes: startle and rooting. When I hold him upright on my chest he moves down (normal baby thing). He loves to be awake in the early morning hours and nap in the afternoon. (Mommy is not a morning person however). I am holding him right now and he is trying to turn his head around to look at the computer screen. I know that the American Academy of Pediatrics recommends no TV until age 3 due to the visional effects and link to the development of learning disorders. However I am not sure if computer counts. When I was a kid TV programs moved much slower; Now you can watch the news and read additional news plus see flashes of the upcoming program. Classroom teachers don't move as quickly around the classroom as the TV effects do. The doctor recommended at his last appointment that he is exposed to sharp lines and black and white contrast to strenghten his eye muscles. Glenn made him a cover for this wedges (a foam incline that is recommended for babies with reflux). One is a black and white checker board;the other one has checker board plus cherries. He is going to get a bath tonight. Does anyone have any advice on a baby carrier or sling that is recommended for premature babies with poor head control? We are working on head control but he has a ways to go. I want to try to put him in a carrier/sling so that around the house I just need to move the oxygen sat probe and tube feeding (if it's meal time). We spend most of our time in the bedroom since all the equipment is in there. However I need to unpack the house which makes it difficult for me to monitor him. He wants to play now.

Finally Home

I finally got to leave the hospital yesterday. They said I was too cute and healthy to stick around a hospital full of sick people, especially those with the flu. My mommy and daddy worried so much that my kitty cats would be jealous of me. Last night, Cali and Angel (my kitties) made sure that mommy woke me to feed me, also if my oxygen alarm went off they made sure to wake mommy up. They smell me and look at me but they don't hiss or harm me. If I don't show any signs of allergy or respiratory distress then we can keep the kitties. We had a few visitors last night and I wanted to show off so I pulled out my NG tube. Mommy put one back down because it was time for my 9PM feed. I had a circumcision then an eye exam all in one day, what was my mommy thinking. My eyes are still immature and the eye doctor does not have any explanation for it. My mommy had to watch whole exam and she cried. They opened my eyes with metal clips then used another metal clip to see other parts of my eyes. I have to another one. You other babies out there or so lucky that you don't have to one of these exams. My mommy is holding me and typing at the same time. I won't be at church or other places for awhile since I am on oxygen, a monitor and tube feedings. My mommy is hoping that I out grow my need for oxygen and a monitor. I hate to combine good news with bad news however this message is for Nurse Tara in Canada. I don't have direct way to contact you. Jasper , a baby that has been in the NICU at Seattle Children's for a very long time is in heaven now.

Swine flu, oh no!!!

"Abe the babe" will be going home on Thursday. The home health agency is coming tomorrow for teaching. When I got back from lunch today I noticed his room mate was gone. The resident came in to tell me that her viral screen came back positive for the H1N1 AKA "swine flu". She had to tell me this information to explain why he will he will need Tamiflu. Abraham is not showing any symptoms however he is having episodes of low oxygen, 84-87% while sleeping. The Tamiflu will be used for 10 days just because of exposure not because he has it. The resident told me that his room mate did not have any symptoms of the flu however her viral screen was positive. Oh great just when we are close to discharge his room mate had to be positive for this. Also the mom would walk into the room without washing or gelling her hands. She brought other children with her too. I let her hold some of the pictures of Abraham too. Abraham has chronic lung disease so he is more likely to develop respiratory infections and have a more difficult time recovering too. The hospital is advising that will not be bringing him to church for awhile due to the risk of infection. Unlike other babies respiratory infections can be fatal to him. Please pray that Abraham, Glenn and myself will not become ill with the flu. I have a pretty strong immune system however the stress level is high and sleep is low. I am trying to load up on vitamin C. I hope my breast milk will protect him. I forgot to see if we also need Tamiflu since she was the room mate since Saturday night. I have watched multiple family members and staff not gel in and gel out of his room. I see this because I am right by the door. He is going to have a busy day: circumcision, eye exam and car seat challenge. His low oxygen might be related to the increased feeding time (over 1/2 hour) and because of reflux or a sign of infection. I have only seen him do it a few times today however I am not sure what it related to yet. I saw the low oxygen even before I knew about his room mate's viral panel and I was already questioning infection as a cause. We have a new room mate, hopefully one that is not contagious. She is a baby too. I am not sure how old she is however the size 1 diapers are too small for her. Abraham wears size one however he is growing quickly.

Going home

Wow we are finally going home this week. The anticipated discharge day is Thursday. Glenn is getting groceries and diapers today. He will be on home tube feedings every 3 hours day and night. The hospital schedule is 3,6,9,12. The tube feeding goes over 1 hour. He will also go home on oxygen as well. I finally met with the discharge planner today. She is working on getting authorization for home nursing, home tube feeding and oxygen equipment and breast pump rental. Abraham is getting his circumcision tomorrow with one of the NICU doctors. In fact it's the doctor that admitted him. I will probably be sleep deprived at home however at least we will be at home. We still don't have our house unpacked but we will get that worked out. We appreciate all the support that was extended to us during this trying time. It is still an uphill battle but it's getting easier.

Discharge Plan

Wow it's becoming more of a reality now. He is tolerating his continuous tube feeds however has a little reflux and is growing. He is up to 8 pounds 4 ounces.What is keeping him in the hospital is the episodes of apnea (absence of breathing, low oxygen saturations on the monitor). He was put on oxygen today 0.1 and he has high oxygen levels. The attending physician spoke with me for a long time and said that he actually would be getting 25% oxygen although the concentration on the oxygen supply is 100%. I questioned him if he took time to research this. He assured me that he consulted with the pulmonary and eye doctor and they all felt this was a safe plan. I have a difficult time trusting people however if this is what he told me then I have to believe it be the truth. If he has episodes apnea that he self recovers from and has less of them then he will be discharged home. I am meeting with the care the coordinator tomorrow to figure out the discharge plan. I will need the breast pump longer than June however I am not sure if Tricare will cover this. It seems like it would be less expensive than specialized formula.

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.