Stop Raining on the Parade- Update

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.