Surgical Update

I called the surgical scheduler today and she said to call back on Monday. This is causing some stress. I don't want to find out Monday that his pre-0p appointment is Tuesday morning and surgery Wednesday. Since they deal with all the time I don't understand why they could not set it up yesterday when we there. We were there for several hours. On a positive note at least this time around we can prepare. When I went into preterm labor I had no idea that Abraham would be born and we would deal with hospital life for 3 1/2 months. The scheduler told me 2 night stay. This is different than what the doctor told me. Please pray for no complications or developmental set back. He has came a long way but we still have an uphill battle to fight. He has came a long way Also the hospital has AC so during hot weather would be a good time. I really, really, really don't want him to have the surgery at all however I have no choice. Eventually it could be life threatening to not have it. Right now his fontanels, soft spots, are open so this allows for increased volume of cerebral spinal fluid. The neurosurgeon that said that if any adult had the size ventricles Abe has that he or she would be in a coma. We are not bringing Abe to church this week or for a while after surgery. I don't want to risk infection especially since one incision will be directly into the brain and one in the abdomen. Just when we start becoming more social and feel somewhat normalized he needs this procedure. We finally were able to schedule with the GI clinic after a month of calling and being told "we don't have any clinical or a referral". I got a letter from Tricare with authorization June 25th. Thankfully a Tricare case manger and the Naval peds clinic discovered that the referral got lost in the documentation. The earliest appt is August 28th. I am concerned that they will refer for surgery for a G-tube placement. I really don't want him to have this. I am starting to question his quality of life now. Right now he is responsive to outside stimuli however will this remain or will he become a "vegetable" and have no quality of life.

7/30/09

Well Abe had the CT scan today. His ventricles in his brain have increased in size and unfortunately the neurosurgeon would like to put in a VP shunt (drain that goes from his brain to his abdomen) next week. I am not sure about the day yet. The neurology nurse practitioner said that neurosurgery does their surgeries on Thursdays and Fridays. We would have to come for a pre-op appointment then surgery the next day. I am hoping they can set up something for us to stay over night near the hospital, such as Fisher House or Ronald McDonald. I assume that they would want him here early the next day. I am very disappointed because VP shunts are a lifelong thing to manage. It is internal however it limits certain activities, there is risk of infection and malfunction which would be an emergency. I just really want to be done with all of this. Why can't I just have a normal child where reaction to immunizations or a cold are my biggest concerns rather than will he ever fully eat like a normal child or walk. The EEG was abnormal as well; A seizure disorder was not diagnosed because the test is "normal for a child with the extent of brain injury that he has and being premature". He will not be started on seizure medications at this time. The VP shunt placement can cause seizures however not having one placed could cause further damage to the brain and no progression of development. I see all these mothers carry there babies around in just a carrier without all the gear or fears that have. I am not too Kean on him being intubated for major surgery. Will this set him back developmentally with his oral feedings and potential oxygen wean? I also question will he make it out of surgery or will God finally decide that his poor soul has served it's purpose and does not want him tortured him any longer. I don't know. He has been a blessing, his beautiful eyes, his dimples and the way he crawls on Glenn when he holds him. I hope he will come out of surgery okay however God knows what the outcome will be. Other children have under gone much riskier surgeries okay. Just when progress is being made this could potentially cause a back slide in everything since hospitalized children tend to regress a little developmentally. Sort of like an adult who does not feel well. We don't feel too good after surgery and it takes a while to fully function in our daily activities. For an infant that would be eating and learning to roll over, lift head, ect. I am waiting for traffic and the heat to calm down. For those of you outside of WA, I heard it was over 100 degrees here. I am sure those in AZ are like so, what it is not a dry heat and most people don't have AC. I figured we would leave when the sun starts to set however that makes for more than a 12 day away from home. We do have two room AC however it's not the same as central AC. We will keep you posted. Please pray that Abe will fly Thur this surgery without problems or set backs, that Glenn and I can cope with it. Glenn has been very busy at work so the timing on this is not great however the surgeon does not want to postpone. I hear that the neurosurgeons don't just do surgery to do it they really weigh benefits and risks especially in young infants. He said that he prefers not to do it however it is medically necessary at this point. The neurologist wants an MRI too. Abe is getting upset, gotta go

7/22/09

Abe's eyes are now mature. His ROP did not progress beyond stage 2 (good) however his eyes do deviate to the side. This might require surgical intervention down the road. His next appt is in November. He tracks intermittently with his eyes. The eye doctor recommended yellow toys and a light. I am using my otoscope as a light and I got a baby Einstein yellow duck. She did not recommend anything with too much color since the goal is to master fine focus and not be focusing on too much at one time. This is difficult since most baby toys have lots of color. He is 12 pounds 14 oz and 62 cm. He is taking more by breastfeeding or bottle and less by tube feeding. However his reflux is significant. I have cut caffeine out of my diet on some days however Mc Donald's has awesome sweet tea for a dollar that is hard to resist; especially on hot and sunny days. His height measurement tends to be all over the place so I question it. I read that eliminating dairy, caffeine and citrus out of the mother's diet can help a breastfed baby with reflux (GERD). I am starting with caffeine however there are so many foods that are considered "dairy" that I eat. Also calcium and vitamin D are important in prevention of osteoporosis. He was started on Prevacid 15 mg solu-tab a week ago however I have not seen much improvement so now he is also on Zantac in the evening. I would prefer that he does not need medication for GERD. I know when I was pregnant I had acid reflux and it is pretty miserable and would have to take medication for it occasionally. If this means he can stop the tube feeding that I will continue the medication. He has shown some improvement over the last day. I was very concerned about him tolerating the amount of his feeding. He is supposed to get 3 oz plus 2 cc (92 cc) every 3 hours day and night. Does anyone know of any natural ways to help babies with reflux? We have a wedge (up right position for him), I try to hold him upright while feeding and minimize movement after he eats. I am not sure what else to do. Sometimes he is fine until I put him in his wedge, when I need to pump, and he starts coughing then spits up everywhere. His sodium bicarbonate level was 26 yesterday (good). This means that his lungs are worker better and that he is not in a chronic state of respiratory acidosis (lungs not functioning properly enough to have proper exchange of oxygen and carbon dioxide). He is having an EGG tomorrow morning as part of the work up for seizure disorders. The exam in scheduled for 8:30AM. It will take 1 hour and he needs to be asleep. This might be difficult since he is use to eating at 9AM however it was the only appointment available. Please pray that he is calm or that the test does not show any evidence of a seizure disorder. Also pray that his CT scan next week does not show increased intracranial pressure or need for a VP shunt. His next appointment with pulmonary doctor is in August; please pray for oxygen wean. It will be so much easier to go places with him without the oxygen and monitor. We did go to a breastfeeding moms meeting today. It was nice to get out of the house. It was also reassuring to know that other moms have had difficulties with breastfeeding. I was concerned that I would be the only one who has to pump and use a bottle. I was the only one who had a baby with a tube feeding though. I learned some information and provided some too. I tried a Moby wrap at the meeting. This is awesome and I would recommend to all mothers especially premature babies. Provides good head support, comfortable for the mother and is recommended for premature babies. I just need to order one now. abe is hungry, gotta go.

July 11th

Abe is 12 pounds 5 oz and 26 inches long. I question the length since this would be a significant jump for him. However he appears to be growing quickly. He is Hugh compared to when he was born. Also my left elbow is hurting from holding him all the time for meals. I might have to make a doctor's appointment. I think I have tendinitis. However the medication they would probably prescribe for this might make me drowsy. I told Motrin the other day and it did make me very drowsy. His doctor is concerned about the significant increase in his head size however on the growth chart everything is straight up rather than following the normal growth curve. Therefore it is questionable if this is healthy normal growth or something to be concerned about. I had typed a long summary of what is currently going on and my computer exit out before posting. So now I will do the quicker version while he is still sleeping. He is off affine, hopefully will not need it again. Caffeine is given for apnea. He still has occasional low oxygen "desats" as low as 85% if the nasal cannula is not in his nose. He still needs the oxygen, monitor while sleeping and tube feedings. I really want to be done with all of it. He is taking more oral feeds, bottle or breastfeeding. However he is content when he takes 40cc and he is supposed to take 88 cc every 3 hours day and night. During the day I don't use the tube feeding unless absolutely necessary. Over the last week he has required the 3am tube feeding and occasionally the midnight, 6AM or 9AM. All the other feeds have been orally. I asked about discontinuing the 3am feed however his doctor is concerned about his reflux. Until he can tolerate increased volume he will continue to need the NG tube and 3AM feed. I am hoping that next month his lungs will be mature enough that he no longer needs the oxygen. He has an eye examination this week. Please pray that the ROP has not progressed and that his eyes are mature. Also pray that his reflux is less. I am wondering if his reflux is attributed to the immaturity of his esophagus, the NG tube and something in my diet that is transferred in breast milk. He pulled out this NG on Friday night and I left it out until 3:30PM on Saturday. I was going to leave it out however I worried about him not getting enough to eat and getting dehydrated. It was so hot on Saturday, his diapers were not as wet as usual and his lips were a little dry. Also his doctor wants the NG tube to remain until the reflux is less. I read in my peds book that 6 French NG tubes were not found to contribute to reflux in some studies. His reflux was less when the tube was out. We are transiting him to taking his medications orally since the new reflux medication is not compatible with NG tubes. This will be difficult since it does not dissolve that great and we can't mixed in a large amount of water. He is on 3 meds: thyroid, reflux and multiple vitamin. His doctor wants to continue with the iron because he did not get all iron stores that he would have received if he was full term. AAP (American Academy of Pediatrics) recommends that all breast feed babies get vitamin D too. So he will have to continue on his. Developmentally: he has increased head control, puts his hands in his mouth and is starting to focus more. He moves his left side more than the right side. I think he might have right sided weakness and will need glasses at a early age. he wants to eat now.

Pulmonary news

We saw the pulmonary doctor at Children's a few days ago. She was very sweet. It's always nice to have a good person working with you and your child. However I am beginning to feel that we have too many people working with us. Pulmonary, GI, endocrinology, neuro surgery, neurodevelopment at Children's and at home, OT/PT, lactation, dietitians, neurology and a pediatrician. I guess at least he does not need urology and cardiology. As he gets better and older I am hoping that the number of specialist decreases. Oh well at least we have health insurance so that he is provided the necessary care. I have had some problems getting his medication for GERD, reflux. It has been a huge hassle however I have one contact person at the Naval Hospital Pharmacy to contact about this issue now. It has to be compounded because his NG tube is a 6 french. In order to use the tablets he needs an 8 French NG tube. The pulmonary doctor thinks that he will outgrow the need for an NG tube and will never need the bigger size. He is taking a lot more by breast or bottle however his carbon dioxide level was high. The body exchanges oxygen and carbon dioxide. This is due to his chronic lung disease. Premature babies develop scar tissue in their lungs which makes breathing more difficult. We are cutting his caffeine dose 1/2 for one week then discontinuing it. Yeah one less medication to worry about. Also if he is awake and with us he can be disconnected from the monitor. In fact most parents don't keep their kids connected all the time. I did because I thought the the information could be downloaded and I wanted to show compliance. I think the equipment limits him developmentally any ways. Yesterday we met with lactation consultant and for some reason I became very emotional. I think it's because her office a few doors down from where I was triage the night I delivered. Maybe some post traumatic stress situation. Apparently she is usually called in for difficult or premature deliveries. She was not called in for my delivery and as a result all the staff now know to call her in. Oh well that can not be changed now however another premature baby could be spared the severe brain bleeding that resulted from the difficult intubation. His oxygen tank ran out and his monitor was alarming, indication that he definitely still requires oxygen. I could not find my car , went to both parking garages and was very stressed. I finally got to the car and when I switched out the oxygen tanks something was wrong with the regulator. I finally went to the ER for assistance. His color was good majority of the time however at one point he was a little gray. It felt like an idiot because I put the regulator on backwards, however I saw a baby who needed oxygen so I quickly was trying to get the equipment ready for him. Several people offered to help me however I was too over whelmed to even know how they could help me. The ER staff determined that the regulator had a leak however it was safe for me to drive home. They replaced the rubber stopper. I am a nurse so I should know how to handle this however in the hospital it's automatic. You just turn the oxygen on. During this time I was already upset with the mention of a G-tube, surgically implanted tube that delivers milk to his stomach. I don't want this. I know the NG tube contributes to his reflux and the G-tube would minimize this risk however there are other risks involved: infection, breathing difficulties from the general anesthesia and scaring if it ever removed. The mention of this made me feel like my child would be tube feeding dependent. I am determined to get him off the tube feeding. We went the whole weekend with only breast or bottle feeding. However when he was sleeping at 3AM Monday morning I decided that he works very hard to take almost 3 oz so I will give him a break. Sometimes it takes him over 1 hour to drink 3 oz. His breathing becomes labored and he gets tired. However we are working on this. Over the last couple of days he seems to struggle less with oral feeds and to be interested. The doctors expect a weight gain of 1/2 pound to 1 pound per week. Wow I might not be able to use the size 1 diapers. It has been revealed to me that God does work. One day after our first outpatient appointments the receptionist at Children's said "lady with the pony tail", (that's me, have not had my hair cut in a year now) I can help you. We got to talking and I shed a few tears. She was a premature baby herself, born 8 weeks about 50 years ago. Her mother slipped on the ice in January then went into labor. She has cerebral palsy however it's barely noticeable. She does walk a little different and has some weakness however she has worked at Children's for 24 years, her speech and vision are fine and she is a smart lady. She is also very kind and thoughtful. She found me when we came back another day and gave me a card. One word of advice she gave me is "my mother always treated me like a regular child". I find this difficult to do when he is hooked up to different pieces of equipment however every day I see more and more normal baby behavior. I am not sure if he can see but he definitely can hear. He needs to eat now. Seems like that is how we spend our time. I envy the mothers and babies who don't have this struggle.