Sunday, July 26, 2009

New Central Line

Aidyn now has a new central line. I always thought if he got a new central line it would be because of a line infection... not because of the line creeping out. We'll never know how it happened, but it sure makes me more paranoid about handling it.

Aidyn did very well in surgery. He was an add on so we had to wait more than a day in the hospital. Poor Aidyn was hungry and I was tired. Thursday afternoon Aidyn was in surgery. The surgeon spent 45 minutes just accessing a branch off of larger vein in order to avoid using a large vein. It would have been much faster and easier, but it meant a large vein wouldn't be compromised. I waited for 2 hours, but luckily I had company. Aidyn's Early Intervention therapist came for support, and she even missed dinner at home to stay with Aidyn post recovery so I could grab dinner. She was so nice. I am very proud of how well Aidyn has recovered. He wasn't even given pain medication afterward. We went home Friday early afternoon.

The dietian has given Aidyn the go ahead to increase feeds a little. He now gets 20 cc's twice a day and 15 cc's four times a day. Hopefully his output won't increase too much. Oh, and Aidyn weighed 3.9 kg, or 8.58 lbs. He's growing well. His PN volume has now gone up, too. Way to go Aidyn!

Wednesday, July 22, 2009

Good News, Bad News

Ok, I'll start with the bad first. Instead of just coming to the hospital for our weekly clinic visit today, Aidyn ended up being admitted into the hospital. This morning, I noticed his central line site under the dressing was leaking a little Omegaven. I phoned the nurse for a heads up so that when we got to our appointment, whoever needed to see it would be notified. Well, the PN nurse suspected Aidyn's line was leaking from a break in the line somewhere under his chest, and a Fellow surgeon thought it could also be a clot stuck in there. If it's just a clot, a solution could be flushed in to clear it and we'd go home. If it's a break, the line would have to be replaced and Aidyn would spend the night in the hospital. Well, he got admitted and had an x-ray done, Turns out the line had moved. The tip of the line should be near the heart, but it was in his neck. So, that means surgery. An IV was started to get fluids in him, but not before a failed attempts. We have the surgery sometime tomorrow, he'll be squeezed in.

For the good news. Aidyn's direct bilirubin went down to 2.3! Dr. Puder said we can go home!! Joey already bought his ticket for the end of the month, so we'll stay here until Aug. 2nd. It'll give us time to get Home Health set up in Arizona among other things. Yay!

Tuesday, July 21, 2009

Captured Smile

Aidyn does not seem to be behind in his developments despite being born early and spending 5 weeks in the NICU. He smiles, makes deliberate conversation, reaches out for things, can keep his head up, likes tummy time (his favorite way to sleep), makes eye contact with pretty much anyone who talks to him, and more I can't think of. It could be because he gets most of my attention since I'm not resposible for anyone but him and myself right now. By the time we head back home, it looks like he'll be where he needs to be, but we'll still utilize Early Intervention to be safe. Here are some pictures taken yesterday.

As you can see, he loves books. He is usually vocal as I read to him.

He worked on his aim a couple days ago.
Aidyn will have his next appointment tomorrow with Danielle and Alexis. We're hoping his bilirubin levels make another nice jump. Pray that Aidyn won't have to be stuck more than once for his blood draw. He has inherited thin veins from me, ugh. Oh, I am so happy to say that Joey will be coming for a visit the end of the month! It will be two months since we have seen each other in person (we have Skyped, which helps a lot). Aidyn recognizes Joey's voice over the phone and the internet, so I know he will be happy to see his Daddy. Stay tuned for tomorrow's update.

Thursday, July 16, 2009

Latest appointments

Aidyn turned 3 months old (or 13 weeks, 7 weeks corrected) on Tuesday. Aidyn is continuing to progress well. Last week he had his CAIR clinic appointment. He weighed in at 7.7 pounds. Several things took place during the appointment. Aidyn was observed being cycled off the TPN for two hours. Initially he was to be observed for one hour, but it turned into two when he needed both a dressing change and ostomy bag change. His blood sugar was tested a half hour after being off TPN and again at an hour off. He did well, so he now cycles off for two hours a day. Aidyn also got his vaccines updated in clinic, four of them. He was exhausted after this appointment. His labs from this appointment showed steady progression. His total was 6.9 and his direct was 4.5. His liver enzymes are still on the high side, but it will come down as the bilirubin comes down. Dr. Puder suggested we wait until Aidyn comes back for his first two month follow up to be reconnected. It will give his liver time to completely normalize and he'll have a smoother recovery. We were a little disappointed to learn we have to wait a few months, but we understand.


He's found his thumb. 7-10-09

Yesterday, Aidyn had his clinic appointment at Dr. Puder's office. He weighed 7.9 pounds. Danielle, the nurse, is very impressed with how good Aidyn is looking. She said Aidyn's gaining weight nicely and is doing very well overall. We decided we would skip the CAIR clinic next week since it is very full and do a regular visit at Dr. Puder's office. We'll have his CAIR clinic appointment the last Thursday of July, when Joey will be here. Well, I saved the best for last. Aidyn's labs came back very well this week. The total bilirubin is 5.3 and the direct is 3.2! A nice jump! We're keeping our fingers crossed that Aidyn and I will get to go home by the end of the month.


Supposed to be napping. 7-11-09

Thursday, July 2, 2009

A little improvement

This week's appointment was with Dr. Puder's clinic. Aidyn gained a little weight and length. He's at 7.63 lbs and 20 1/4 inches. We're stll going to keep his oral feeds the same. We will address the weaning of TPN next week with the CAIR team, so he will still get the PN over 24 hours a day. Dr. Puder would like to get Aidyn's vaccines upto date now that his bilirubin levels are going down. He received the Rotovirus vaccine in the office. It is an oral vaccine and Aidyn drank it like a pro. He'll recieve more vaccines next week. Finally the lab results. The levels went down, but not by much. The total bilirubin is now at 7.6, while the direct is at 4.7. We were slightly disappointed it wasn't less than that, but are grateful that it is still going down.

Aidyn's color and eyes continue to improve. Dr. Puder and the nurses are impressed with Aidyn's activity level.