Tuesday, April 27, 2010
So as we come to the end of our 1st month at home there have definitely been more triumphs than trials in my opinion. I sometimes look back and have to remind myself to look at the big picture. I have lived "in the moment" since 12/07/09 and I often miss what many others see. Living "in the moment" kept me sane, but it also can take away the reality of the magnitude of Harrison's journey in just these 4 months of his life. But when I finally do stop and take a look at what all has transpired, I am often overwhelmed by the events. I have mixed emotions of joy, awe, and disbelief, but I also am reminded of the pain, heartache, and anxiety that I felt during those times. It is very hard for me to "relive" those moments. When I first started this blog, I wanted to reach out to others who were experiencing something similar and I was excited to have people contact me and share stories and experiences. But eventually, these new connections became a source of anxiety. I would get an email with the headline "My child is just like yours" and as I would read I would relive those moments again, and then I would read about how this child had this complication, and that additional surgery and I would almost hyperventilate at the reminder that we are not out of the woods. You know, it is that whole idea of "what you don't know won't kill you" mind set. I know this, and I began to hate getting those emails. I was letting fear take over my body and my need to control dictate my emotions. So I prayed hard that I would be relieved of this burden. And so God revealed to me that I can read emails from other mothers whose children are "just like mine" all day long, but their emails are NOT the written book of my son's life. The only one who knows the path Harrison's life will take is God and I must trust that he will lead me there and hold my hand the entire way. So please continue to pray for us as we continue this journey. Harrison is home, but he is still sick. If you haven't seen him, he is still jaundiced. He is very tiny, and he fatigues easily. The signs are subtle to outsiders, but they are daily reminders to me that this journey isn't over.
Here are his updates:
Feeding/Weight- Since being at home, Harrison has gained about 10oz but he should have gained between 16 and 32oz so he is behind BUT he is gaining and not losing. He also grew a 1/2 inch. So he now weighs 10lbs 5oz and is 23 inches long. As for feeding, Harrison still is fed by G-tube, but he will take a bottle 4-5 times a day but he is unable to take his entire amount. For awhile, we were able to get him to take by bottle more than he was being fed through a g-tube, but he has slightly regressed in the past couple of days. It is very difficult to judge how much to feed him. In a healthy baby they will eat until satisfied and they give you hunger cues. Harrison has had very little opportunity to experience hunger so he will mostly just sleep if he is hungry, but he also has trouble eating the amount a 3 month baby can eat in 15 minutes. So feeding/weight is a constant battle and source of anxiety for me. Praise God for the progress thus far for it is better than most expected. Please continue to pray for his progress in feeding. We will probably start solids in the next month or so and that can pose an entirely new set of issues.
Liver- No new labs for his liver function have been drawn since my last post but new ones are due the beginning of May. I have finally relinquished my obsession over his stool for it is unreliable at this point, so now I focus on his skin color and behavior. Harrison has gained some strength but he still has days where he sleeps often. He still burns lots of calories just doing normal baby activities and tires quickly. And for several weeks, his skin color would fluctuate from being very bronze to being a pale yellow. But in the past week, his color has been fairly consistent and he looks better than he has in quite some time. I have no idea if this means anything, only the labs will tell. But I pray that it is a good sign. Please continue to pray for the function of his liver.
Neurology- Harrison had a follow up appt for his "possible tethered cord" diagnosis. At this time, Harrison is not showing signs of a tethered cord, but it can be difficult to tell in infancy. An MRI of his spine has been scheduled for June. This will either confirm or dispute the diagnosis of a tethered cord. I am praying that Harrison does not have a tethered cord. It is a possibility that he will not have a tethered cord, but the dr says "it is a slim chance." If he does have a tethered cord, it would mean another surgery at some point and can cause possible bladder/bowel issues. Please pray that test results will reveal no abnormalities in his spine.
Cardiology- Harrison had his follow up appt with the heart doctors and they said his heart is doing very well. He will not need to be seen again for 6 months and should be able to come off his baby aspirin in August. Praise God for this good news.
Development- Harrison has made great progress since coming home in many areas. He recently started cooing and reaching out for toys. He has also made great progress in his head control. Please continue to pray for his development. Tummy time is very difficult since his colostomy and g-tube are both externally located on his abdomen making it sometimes uncomfortable. His large liver also makes it difficult for him since it puts extra pressure on his stomach and diaphragm. He works hard and gets very frustrated, but he keeps trying. Praise God for the progress thus far.
Harrison regularly sees GI doctors for his liver, pediatrician for weight and basic baby care, a home health care nurse to do weekly weight and ostomy checks, and a therapist who works with his functional and oral motor skills weekly. Please pray for their wisdom as they continue to care for him.
Thank you to everyone for your kindness and support. It has been so cherished by our family. We cannot thank you enough for your love.
Wednesday, April 7, 2010
Well Harrison had his homecoming on Tuesday March 23, 2010 after 14 weeks in the NICU. There was much craziness and changes that took place up to the last minutes of his stay in the hospital. The weekend before he came home, we met with the home health supply company at the hospital and spent about 2 hrs training on his apnea and oxygen monitors. That Saturday night, we roomed in with Harrison and he was hooked to the monitors we would use at home as well as the ones the hospital uses. They had to leave their monitors on. So the monitors interfered with each other all night long causing many false alarms and lots of lost sleep. So on Sunday we took Harrison back to the NICU and went home to prepare for his coming home. On Monday we returned to the hospital to learn that Harrison would NOT be going home with any of the monitors because he would not be going home on oxygen. Insurance would not pay for oxygen that wasnt needed all the time and so all that time training and the sleepless night was for nothing. So in part it was a good thing because we had a lot less equipment coming into our home but on the other hand we would have no monitors to let us know if something went wrong. I told Jamie that at some point we were going to have to let go of the worries and trust in God that Harrison would do fine even without the monitors.
On Tuesday- Coming home day we come in to find out that Harrison hadn't gained weight in the last week and actually had lost weight the past two days. So they were increasing his feeds by a good amount. We were very nervous because this would be the biggest increase he had been given all at once. We waited through 2 feeds and he did well so home we went. The only equipment we had to come home with was a feeding pump. Hallelujah!!
We came home to nicely decorated yard with beautiful welcome home signs made by my best friend Lauren and my mom. It was heart warming to see the love and thoughtfullness behind these efforts.
The first couple of days were busy organizing all of his medical supplies that were coming in for his ostomy, feeding tube, and feeding pump. And then home health came out to do a check up on him. All was well but busy.
Many have asked how he sleeps at night..Well..he sleeps great..but he is also continuously fed so he never gets really hungry. He tends to start stirring at 4am for a diaper change and by 6:30 he is usually up and smiling. So overall he does well. We are currently waiting on a foam bed to come in that will keep him elevated since he feeds all night long. We are temporarily using a smaller inclined foam seat called a NAP NANNY set in a pack in play so we can keep a close eye on him until his bed comes in.
As far as being at home...Harrison has overall done very well. The hardest part is trying to keep him on his feed schedule and learning when to increase his feeds. When you dont feed a baby by botttle or on demand it is hard to guess how much he needs or will take and I dont have scales to weigh him daily to make sure he is still gaining weight. Harrison also has numerous dr appts that require taking his feeding pump on the go. So far this has worked out well, but it initially had its difficulties while mom and I tried to figure it out for 2 hrs in the KOHL's dressing room. HILARIOUS!
So here is a glimpse at the day in the life of Harrison..
4am- Starts stirring and sometimes crying and mom wakes up to change his diaper and ostomy bag. Mom puts him bag in bed and he usually goes to sleep within the next 30min to hour.
6:30am- Starts stirring and usually wakes up quietly smiling and sometimes crying depending on how he feels. Occasionally he drifts back to sleep but usually he stays aways.
He is on a continous drip of formula through his g-tube til 8am.
8am- Stop feeding pump and change diaper, empty ostomy bag, and put on clean clothes for the day. Sometimes a bath gets squeezed in during this time.
Then it is move his feeding pump, NAP NANNY, and of course Harrison himself downstairs for the day.
8:30am- Start warming his formula for his 9:00 feed and getting 3 of his 5 meds ready to give with his 9am feeding.
8:45am-Attempt to bottle feed Harrison. (His first bottle he only took 5ml which is 1/6th of an oz. and he now regularly takes 20ml and has taken as much as 33ml which is a little over an oz.)
9am- Hook Harrison up to his feeding pump and run the remainder of his formula for the next hour. I administer all 3 meds through his tube during this feeding. During this time he stays in his NAP NANNY seat to keep him elevated while he eats. He usually sleeps during this time.
10am- turn off feeding pump and wait 30min for food to settle.
10:30am- If he is awake, I unplug his feeding tube and spend time doing some therapy with him like tummy time, or baby massage, or working on holding head up, etc.
11am-Either continue to play on floor mat or he may still be asleep and just waking up in which I will start therapy then.
11:30am- Start warming formula for his next feed at NOON. Change diaper and empty ostomy bag. Get 2 more meds ready for his noon feeding.
11:45am- Attempt to bottle feed Harrison again.
12pm- Hook Harrison up to feeding pump and drip formula in over the next hour. I administer 2 meds during this feeding.
1pm- Stop feeding and wait 30 min for it to settle.
1:30pm- Again sometimes Harrison is still asleep and sometimes he is awake. If he is awake, we have tummy time or play time.
2:30pm- Start preparing formula for his 3 o'clock feeding. Change diaper and empty ostomy bag.
2:45p-Attempt to bottle feed Harrison.
3pm-Hook Harrison up to his feeding pump. During this time he usually take a long nap
4pm- Stop feeding pump- He usually is still asleep.
5:30pm- start preparing formula for his 6pm feeding. Change diaper and ostomy bag.
5:45pm- Attempt to bottle feed Harrison.
6pmHook Harrison up to pump for his last bolus feed of the day.
7pm- Stop feeding pump and usually put Harrison down to play for a while.
7:30pm-Change diaper and empty ostomy bag and prepare him for bed. Get formula ready for the night. Change out all the bags and tubing to his feeding pump and make up new formula batch. Give Harrison 1 of this 3 meds for the night.
8pm-8am- Harrison is hooked to the feeding pump for 12 hrs so he is continuously fed during this time.
9pm- Administer Harrison's last 2 meds for the day.
12am- Change Harrison's diaper and empty ostomy bag and move feeding pump, NAP NANNY, and of course Harrison upstairs for bed.
Every 4 hours I wake up to restart his feeds and add more formula to his pump.
So you can see that there is very little wiggle room with his feeds. It is nice to have him home, but sometimes I feel much more like a nurse than a mom since I feel he spends a good deal of time in his NAP NANNY either sleeping or eating and not in my arms or in a stroller like a healthy baby would. I also spend a good deal of time preparing meds, formula, or feeding pump supplies. But we manage and do pretty well.
Many of you have asked about Emily- I feel she is doing very well with Harrison home. She loves him and always wants to hug him, kiss him, hold him, and she even washes her hands when she comes home without me even asking. She has such a beautiful heart and is so loving. She told me the other day that when Jamie and I die she would take goood care of Harrison and that she would keep him forever. So precious! She also is learning how to change his diaper and put clothes on him. She is such a great helper and very proud of her little brother.
As for Harrison's overall health-
Feeding- Since being home Harrison's feeding tolerance has gotten much better and he is able to take some feed by bottle. I have been able to increase his volume without any issues and I am currently working on cutting down the time he takes his feed in.
Weight- Harrison weighs 10lbs and he left the hospital at 9lbs 11oz. He needs to be around 12lbs to be at an ideal weight for his height.
Liver- this is the most frustrating part. His stool color has drastically changed since coming home to a pale color which is not good. His liver labs still show stable liver function and no rise in bilirubin numbers, but I have just never seen his stool do this switching back forth of pale and colored so frequently. He currently does not meet the criteria for a liver transplant at this point but he is a candidate if that time ever comes. One thing I am not sure everyone understands is that biliary atresia has no cure. Harrison could still die from liver failure before he ever receives a liver transplant and the liver transplant itself could fail or take his life due to the nature of the surgery. This disease is serious and life threatening. He obviously has some bile flow because his bilirubin levels have not consistently risen but it must go back and forth between flowing and not flowing because his stool color and skin color can change drastically in a matter of days. So it is a waiting game to see what is going to happen. Even the drs seems a little baffled at this one. Leave it to Harrison to do things differently than the textbooks.Please continue to pray that Harrison will defy all odds and bile will flow freely and allow him to keep his native liver.
Heart- Heart function is great and his defect is considered totally repaired.
Spine- Back in the first weeks of Harrison's life, a spinal ultrasound showed the possibility of a tethered cord. The neurosurgeon said they couldn's diagnose 100% without doing an MRI which they wouldn't do until about 4months of age. Harrison has an appt on the 20th to discuss this again. I do know of one parent whose child was also diagnosed with a tethered cord and that on the 4 month mRI it was revealed he did not have a tethered cord. Please pray for this area of Harrison because if he does have a tethered cord it could mean more surgeries for Harrison and other complications.
Growth and Development- As of now, Harrison is below the 5th% for height,weight, and head circumference so please pray that he will continue to grow and get stronger and healthier. He has also been assessed by therapists and it was stated that he has extremely low muscle mass particular in his upper extremeties. This means that lots of hard work on his part and therapy will be needed to build his muscle tone. Please pray that he will continue to develop in these areas as well. As for milestones, he has a few that are on target, but he is mostly behind. There are many factors that can contribute to this so please pray that he will continue to make strides in this area as well.
Harrison has definitely been living proof of the power of prayer and without the power and graciousness of God he would not be where he is today. Please continue to lift him up in prayer for his journey still continues.