Ian is 6 months old!

Ian turned 6 months old yesterday.

He continues to do really well at home. He's up to 8lb 13oz today. He's taking all feeds by mouth and taking more and more each day. His bilirubin levels are finally dropping. He continues to be yellow but they tell me that it will take a long time for that to go away. We are in the process of attempting to change his formula if his intestines will tolerate it. So far, I've been mixing 1/4 alimentum with 3/4 neocate and today they tested the stool specimens from the past few days and they were all neg for blood...YEAH! Tomorrow i start mixing half ali with half neo. He's thriving well. :)

Ian is now completely off the feeding tube and eating his bottles great! So much so, that we've had to keep increasing the amount he gets because it doesn't hold him over and he seems to think he's starving all the time lol. He's up to drinking 3oz at a time now (which should be every 3 hours, but he generally throws a fit and wants it every 2 to 2 1/2 hrs). He's up to 8lb 6oz this week from 8lb 4oz last week.

He's now wire/tube free during the day! I cart him around like a regular baby these days. I only have to put his apnea/heartrate monitor on him at night now, or whenever i'm sleeping, etc. He's not had a single apnea episode since coming home. He has had several brady's but the monitor is set to alarm if his heartrate falls below 80 and the pediatrician says as long as it's above 60 then it's okay.

We went to see the surgeon Wednesday. Ian has 3 hernias... one to each side of his belly and one in the center. Dr. L wants to try to wait 3-6months to do that surgery (he's hoping for 6 more months). He'll see him monthly until then to watch and if they don't get worse, then we'll keep waiting. And we'll get the circumcision done at that time also.

He is still very jaundice. It hasn't seemed to decrease at all. He's still on 2 medications to help deplete the bilirubin. The Dr told me yesterday that it could take "months to years" to go away. I was very surprised to hear "years". We will follow up with the surgeon, gi doc, and urologist (for the hydronephrosis) in one month. We're being scheduled to see an endocrinologist soon also... to address the hypothyroidism. He doesn't have to see the eye dr until the end of october, or the developmental clinic until december. I've left messages with SoonerStart to get PT/OT/ST out here to evaluate him but no call back as of yet. I'm taking him to the dr in the morning to have his bilirubin rechecked.

The pediatrician called me today and said she consulted with the GI doc we'll be seeing (she saw him in the nicu)...and they gave the okay to start trying other formula. (because i mentioned to her that neocate was really expensive and my insurance adamantly refused to cover it.... so i'd asked how long before we could try other kinds so that i didn't order too much of it with it being expensive and only available thru the internet). She says that the gi doc said it should be fine and that he'll still need special formula due to the liver issues but that they believe the intestines will do okay. I start today mixing 1/4 Alimentum to 3/4 Neocate. We'll try that on him for 3 days, then check his stools for blood for 3 days and if he tolerates everything, go 1/2 & 1/2 etc.

Also, now, unless he wakes up during the night hungry, i only have to wake him once during the night to feed him instead of every 2-3hrs.

And that's all i can think of for now!

Hugs to you all!

Ian has been home for 10 days now. He's doing great! He hasn't had to have a feeding by tube since friday morning. He's been taking all of his bottles and fussing about an hour later like he's starving, so i finally just started giving him a little more when he gets that way and he eats it.... then eats his full bottle another 1 1/2 hrs later lol. I pulled his feeding tube out today since he hasn't needed it lately. I figure if he gets to where he needs it, i'll just put another one in but no since in having it in if he's going to eat everything by mouth. He's still very jaundice. We go to see the surgeon on Wednesday and for a weight check at the pediatrician on wednesday as well. I took him to work with me Friday and today....I couldn't get alot done with him fussy and wanting to be held so i put him in a sling and carried him around all day and he curled up and slept. he loved it! I haven't heard from the pediatrician about the referrals to the specialists and i still need to call SoonerStart to get therapists out here to evaluate him.

All in all, he's doing great, thriving well, and he's even starting to smile at us when we talk to him. It's so cute!

IAN IS HOME!!!

After 165 days in the NICU, we brought Ian home today! He seems to be adjusting well and keeps busy checking out his new surroundings. Things are going well. He's had 3 episodes of low heart rate since coming home, but they went right back up without intervention. He's on a monitor that monitors his heart rate and breaths taken. It will go off if his heart rate gets above 230 or below 80, then if he doesn't breathe for 20seconds. He's eating well but not all of it, so the remainder is fed through the feeding tube. I gave him his medications by mouth tonight, all except one that was specifically ordered to be given thru the NG tube. He took them well. It was the weirdest feeling to carry him out of the nicu today, into the elevator and out of the hospital doors. He will have lots and lots of Dr's appts in the next few weeks. They are also planning to do the surgeries in a few weeks but i'll know more in 2 wks when we follow up with the surgeon. The surgery will be for a hernia repair and the circumcision (both at the same time). I'm worried i won't wake up to hear him cry or to hear the monitors or to the alarm to feed him..... Surely i will right? Well, I'm off to warm up a bottle and get him fed and settled into our bedroom so i can follow shortly. Thank you for all of your prayers.

IAN IS COMING HOME!

I never thought i'd be able to type that title! Ian is being discharged home tomorrow morning. Everything is set up today to be ready for d/c tomorrow. He'll be coming home with monitors and a feeding tube/pump (until he learns to eat better).

After 5 1/2 months
After 165 days
After 3 major surgeries
After being told many times he'd never make it
After many infections
After every preemie complication you can imagine...
Ian is coming home!

Thank you all for your prayers!
Christy

Pics from 5-6-08

He's eating his bottles better!

Ian is supposed to be eating 70cc every 3 hours. This morning he ate 50cc for the nurse, then 63cc for me at 11am, the full 70cc at 2pm... then i went to work before the next feeding... but they say he took 50cc of the next 2 bottles. The speech pathologist agrees taht he's improving very very quickly from last week and that i should just take him home wtih the feeding tube if comfortable with it and she's going to recommend that to the dr. The chg nurse is checking with BCBS to see if they will cover the neocate formula so that they can get it ordered for me. He's been scheduled for a hearing test, and i'm taking the carseat up tomorrow for the car seat test. They told me to make a pediatrician appt for early next week like monday or so. So, i'm assuming that they expect to discharge in a few days... i dunno......this is all coming from the nurses...haven't gotten to talk to the docs yet.... we'll see :)

Day 158

It's day 158 of our nicu stay. Ian continues to do well. He still has a bit of a cough and wheeze but doing better. He's still only getting to attempt bottles twice a day. The speech pathologist will not increase this to let him try more often (which makes no sense since he was drinking everything every 3 hours before the cold). Guess they'd like to drag it out now that we are so close...... yet so far. It went from "the end of this week" to "who the hell knows!". All thanks to the speech pathologist who is supposed to be helping but is making things go much slower. He is off of TPN now and all nutrition is thru formula (feeding tube). He's lost down to 8lb 2.5oz. He's awake alllllllll the time anymore with these bigggg brown eyes just looking around. He just lays there and stares at me lol..... it's cute. He's tolerating all of his formula and pooping regularly with no problems. :)

I haven't posted lately, so here's a pic of when Alisa came to see him on Monday (4-28-08). Alisa is a Respiratory Therapist from Mercy NICU where Ian was before this hospital. She was always so great with him (they all were) and she's such a sweet person. Ian always responded to her voice when he was a teeny guy. She was really surprised to see how much he's grown! She's having a little girl, so we are pre-arranging their marriage! LOL jk