Ok, it’s been a little while. Once again! OF COURSE! And I can’t say it will get any better because when I’m home alone all day with this little boy of ours it’s hard to get anything done, let alone sit down at the computer to write a blog!
So, as it already says WE ARE ALL HOME TOGETHER AS A FAMILY! FINALLY!!!!!!! When I wrote the last blog I mentioned that we were hoping Cannon would get out of the hospital within the next couple of weeks. Well, it happened. We finally got to bring our special guy home on June 24, 2011. What a special day. We’ve had some pretty crazy times! Cannon had a rough time of it for a couple of weeks when we got home. I’m not going to go into detail because it was so scary and upsetting and I just don’t feel like recounting it all! I want to forget it. Honestly, I was looking for the returns department at the hospital so they could fix him again and then send him home. But when the times were going smoothly it was great. It was so wonderful to finally have this child home.
So fast forward 3 weeks. We returned to ACH to do Cannon’s follow up appointments. I had been in close contact with one of the dr’s nurses and I had told her a few days before our appt. that I thought Cannon’s jaundice had worsened. Well, I was correct. We left the first appt. with the neonatologist who had said he didn’t like how jaundice Cannon looked and headed to the appt. with the surgeon to hopefully get his g tube out. Well, the dr. had called the surgeon and said he needed Cannon admitted to the hospital to start running tests because in the time it took them to run his lab and us get to the surgeons office they had found out through the lab work that his jaundice level had in fact worsened. And quite a bit! So back into the hospital we go (for what ended up being a 12 day stay!). Of course, he could not return to the NICU where he had 5 primary nurses. Ugh. I was NOT happy about this even though I knew it before we got there. I did not like the new floor we were on, although I eventually adjusted. They ran several tests and scans and finally decided to do a liver biopsy. It was incredibly scary going through all of this and seeing the “laundry list” of issues that can go on with the liver and wondering which one of all these things could be going on with Cannon. We finally have all the results back from the liver biopsy and everything is normal. They determined what he had is TPN cholestasis. This is due to him being on TPN and lipids for such a long time and at such high doses before he was able to have his repair. We knew from the beginning he would have some liver damage from this, but unfortunately it was necessary for him to grow to have his surgery. So they have him on meds for that and it is very slowly getting better. We are praying that over the next few months everything will normalize on his lab work.
Also while he was in the hospital he was dealing with not gaining weight. While we were home the first time home health was coming over to weigh him each week. On their scale he was showing a good weight gain. So you can imagine our shock when we got to the dr. at ACH to find out that he had only put on ONE OUNCE in the little over 3 weeks that we had be home!!! Trent and I were so upset. I asked the dr’s. if this was something I had done to him because I had been feeding him the amount they told me to feed him and increased the amount each week like they had told me. I felt like a horrible mother! They reassured me that it wasn’t my fault, but of course as any mom would I still felt like it was something I had done. So now the dr’s. and dietitian have him on some formula mixed with milk that is for babies with fat malabsorption problems. He is gaining weight wonderfully now! This weight gain issue could be secondary to the liver issues he’s having. So we are praying that as his liver gets better his weight gain will get better too. Right now they still have us waking him in the middle of the night to feed him. He is on a 2.5-3 hour feeding schedule during the day and eats every 4 hours at night. This kid wants to sleep through the night, but he has to be able to take more volume during the day and keep up his weight before the dr’s will let him start sleeping through the night without feeding. We are all exhausted from this night schedule! Haha! But it will get better with time and we want to do what is best for Cannon! So please continue to pray for God’s healing hand to be on Cannon and make him better.
On a lighter note, it has been so fun to watch Cannon as he has become much more alert. He has the biggest and brightest smile. He “talks” to us all the time! His little faces are so funny to watch. He is SO SPOILED ROTTEN! He wants to be held ALL the time! I rarely get much done. (Like this blog that I started WEEKS ago!) But that’s all ok because we love being entertained by this kiddo! He’s the most adorable thing Trent and I have ever seen! Now with all that said, I must admit I’m going a little stir crazy in this house! Since Cannon isn’t supposed to really be exposed to people and all we stay in as much as possible. I think it’s kind of wearing on all of us. And we are supposed to not have him around people as much as possible and this will last all the way through the “sick season” which will be around March! UGH! We just can’t risk him getting sick, but it is going to be a LONG winter staying at the house! So also pray I don’t go completely off my rocker! Haha!
So like I said it’s taken me weeks to write this blog. I’m not deleting everything I’ve already written, but Cannon did have his checkup with his G.I. dr. and with the neonatologist that saw him in the NICU. Both check ups went well. The appt. with the G.I. dr. revealed that his jaundice level is going down! This was fantastic news. The liver is trying to repair itself and is doing well at that. At his next appt. in a month we will discuss introducing solid foods to his diet. Also, as his jaundice level continues to go down he may get to come off his formula he’s on now with all the extra stuff to help him absorb fat and onto a regular formula along with milk. At the neonatology dr. appt. he said that Cannon is doing great for his “adjusted” age and physically and mentally developing wonderfully! He is strong physically and strong willed. He had all the right responses to the dr. and he said that his voice is strong and doesn’t sound raspy or anything from his repair. This is all wonderful news!
Thank you all so much for all the prayers for Cannon. Maybe it won’t take me so long to do a blog next time. No pictures this time. I have a ton, but haven’t uploaded them and before it takes me another 3 weeks to post this blog I’m just going to post it and do pictures later! Haha!
Love,
Christian, Trent, and Cannon
