The Liver #2

Yesterday was the day, we had to be at the hospital at 7:00 to check in and have Logan drink something that smelled like grape juice. His actual test wasn't until 10:30, so the poor little guy had to go a long time without eating. His actual last real feed was at 4:30. The test occurred at 10:30 and I handed my precious little boy over to a nurse who said we will come and get you in an hour. An hour later they came out and said he is waking up and we can come and see him. We had to stay at the hospital till 4:30 so he could be observed to make sure he didn't have a reaction to the anastisouse. During this time I was able to visit for a few minutes with my wonderful friend Abby. It was nice to see her in the cafeteria and catch up for a few minutes.
We left the hospital and went to get our kids at my friends house in Beaverton. While Ryan and I ran into the house to grab the kids I left my cell phone in the car. The doctor told me it would take a few days to get the results back, so I didn't even think of grabbing my phone for the five minutes we would be in the house. Well, of course while I was in there the doctor called and left a wonderful message. The liver did not show any signs of cancer spots. It looks like it is doing a wonderful job of regenerating itself. He doesn't need to see us for two weeks. He wants to repeat an ultrasound in a few months, but he was very happy with what he saw. PRAISE THE LORD!!!!!!!!!!!!!!!!!!!! Last night I went back again to feeling like my little guy was just a normal little newborn with a few issues that includes adorable baby acne.

The Liver

At 11:00 today the liver specialists called and and said that we need to bring Logan in on Tuesday for a c-t scan of his liver. Apparently one of the tests they have been following continues to increase. The test they are watching is called the alpha-feta-protein test. This tests for cancer in the liver. So, on Tuesday we will go and see what is going on. Please pray that it is nothing and the levels are just high because of the damage that was done to his liver.

2/25/08 Doc visits

Today was our Portland trip to see the specialists.
In a nutshell here are the updates:

Liver specialists: Logan continues to improve every visit. He is now at 10lbs so we can try and give him just breast milk for his feedings. That means I can try and just nurse him except for three feedings out of the day where I need to dilute one of his medications in a bottle. There are still a few very scary things that can happen while his liver continues to improve. One of them is more bleeding in the brain. The doctor is continueing to watch his blood levels which will show if this is occuring. The wrong labs were drawn on him last week so we had to redraw them today and we won't know those results till later in the week.

After this visit we travel across the street and see the kidney specialists:
He continues to show improvement in his kidneys also. We are now functioning at 45%. Today was the first time that the doctor talked about the longterm effect that the damage has had on the kidneys. Basically the doctor told us that by the end of his first year we will know the extent of the damage. It looks like at this point at some point in his life he will need a kidney transplant. The doctor will just use this next year to gage when that will be. If the kidney stayed just he way it is today he would need one around the age of 10 or 11. If the kidney continues to improve (which I must stress it has) then we are looking at the age of 30-40. If he starts even improving more rapidly we are looking at the age of 70-80. The bottom line is his kidneys are bad and more than likely at some point in his life they will need to be replaced.

That was his visits today in a nutshell.
I left both appointments feeling a little discouraged. It was just a reminder to me that I really just need to enjoy each day that I have with him and take everything one step at a time.
I know that God has such a wonderful plan for this little guy, but above and beyond Logan I know that God has so much that he wants me to do on this earth. I have learned so much through this little guy.

Updated Pictures

Praise the Lord!!!!! Logan gained a whole pound today from last week, hence the reason I was asking the water question. My milk just can't keep up with my growing man.

HELP

Question for all you mommies:
Is salem water safe for using in a baby bottle without boiling it?

Logan 5 weeks old

I can't believe Logan is already five weeks old. I will try and give you an update on how he is doing.
1. Liver - Improving every visit. The two huge bruises on his liver are going away. One is completely gone and the other one has shrunk by half. They theory is that all of the internal bleeding he had started in the liver. The liver specialist has him on three different medications for now. As of last week he was pleased with his progress and does not want to see us again for two weeks.
2. Kidneys - The kidneys are now functioning at 20% this sounds bad, but we were at 0%. Like the liver specialist the kidney specialist feels like we continue to improve. He has put him on a medication to stabilize is acid levels, but other than that he was pleased. Like the liver doc we will see the kidney doc in two weeks.
3. WEIGHT - this has been the most concerning area for the last week. The liver doc has him on a special formula mixed with my breast milk then mixed with a fatty oil. It is a fun cocktail that I get to mix up every three hours. The good news is he was put on this cocktail last week and three days later when he saw his regular peditriation he had gained 3 ounces. PRAISE GOD!!!!!! It is working.
His pediatriation is seeing him on the off week that we are not going to Portland for the specialists. Our next visit is next Tuesday where she will weigh him and draw labs for the specialists for the following week.
Please just continue to pray for healing. We continue to give God the glory in the miracle that Logan is. His little body has healed so much in the last five weeks.
I will try and keep you posted on the weekly visits

Home Sweet Home

We are home!!!!!!!!
I have so much to write about, but for now I will just give you a little
update on how Logan is doing.
1. He gained weight for the first time on his doctor visit this week.
This was great news because he had continued to lose weight since he
had his last blood transfusion. With this good news I can now try and nurse him at his 3:00a.m. feeding. He HAS to eat every three hours, a combination of my milk and a special formula for his liver.
2. We are doing a blood draw this monday to see where his kidney and liver levels are.
3. On Friday we see the liver and kidney specialists in Portland to see how we are progressing.
We have come so far in the last month with our little miracle baby. We still have a long road ahead of us this year, but we trust that the Lord will continue to do His will through Logan and our family.
Please just pray for the continued improvment of his liver and kidneys and for the long term effect that all of this trama has had on his little body.
Thank you again to everyone for all of your love and support.