Merry Christmas!

I'd like to wish everyone a Merry Christmas! I'm very happy to be having Ian at home with us this Christmas. This time last year he was not doing well, he had contracted an infection and was also placed on the oscillator (diff type of ventilator) the day before christmas. He was a little over 2lbs at that time. Today he is growing and thriving and he's a whopping 16lbs 9oz and almost 27" long. He's babbling and saying da da and ummmm (when he eats). Yes he's eating!! Rice Cereal, Oatmeal, Peas, Green Beans, Carrots, Squash, Bananas, & Chicken so far!! He's doing so well with it that we've even cut his Pectin (added to his formula) in half too! He's army crawling, not crawling on hands and knees yet, and he hates to sit up but we're working on that. He loves to stand and jump. It's been a rough year and financially it has been excrutiating being unable to work much, but things are beginning to look up. Ian has been home almost 4 months straight now and i've been able to at least work weekends.

Merry Christmas to everyone! And a special merry christmas to all of the nicu nurses and the parents who are having to experience that aweful rollercoaster ride. I'm thinking of you and praying for you at this holiday time and always.

Big Hugs,
Christy & Ian

(a couple of pics from his birthday last month)

Happy Birthday Ian!

Ian turned one today!!!!

Happy Birthday to You,
Happy Birthday to You,
Happy Birthday dear Ian,
Happy Birthday to You!

I'm sooo proud of him for having such strength and making it through so much this past year when all the odds were stacked against him. I love him more than anything in this world and don't know what life was without him. He was born weighing 2lb 4oz and 13 3/4 in long....he's now over 16lbs and 25 3/4in long!

Mommy & Daddy love you soooooooo much Ian! Happy Birthday baby boy!!!

Halloween pics

Some new pics

Ian & Daddy (I LOVE this pic!)



He just started making this fishy face yesterday lol

MILESTONE!!

Ian got to try rice cereal for the first time this morning! He's never been able to have anything but Neocate formula before now. We are starting out small and slow at just 1-2tsp a day. He seemed to enjoy it but wanted to take and play with the spoon. It's both exciting and scarey because noone knows how his intestines will handle it or what may happen. I think he'll do great though, he's been doing so well lately! :)

9 1/2 months old

Ian's hearing test follow-up

I took Ian to the Audiologist for a follow up due to failing his hearing screen in the nicu. He has great hearing in the right ear but has 50% hearing loss in the left ear :( They will now monitor him to make sure it doesn't affect his speech, and monitor for fluid in the middle ears so that his good ear doesn't sound muffled and affect him. The audiologist said that it's a good thing to know so that when he's older, we know to focus more on his good side for classrooms, etc. Anyhow, we just monitor every 3 months for now, and when he gets older, they can test him better to see what he actually understands vs hearing from the left ear.

Finally an update :)

Our internet has been messed up for a few weeks so i have been unable to update here. Ian has been doing really well. We noticed his eyes crossing occasionally and the right eye turning inward alot, so I took him to the eye dr and it ends up he is farsighted and needs glasses. He's doing soooo much better with his glasses now! But boy is it a struggle to keep them on his eyes lol. He prefers to use them as a chew toy or a necklace lol. He's getting close to 12lbs now and is 24in long. He's growing so much! He's making alot of noises these days which is cute. He started to roll over from tummy to back a few days ago and today he rolled from his back to his tummy. He also started raising his head and shoulders off of the floor when on his tummy and will put his legs down to stand when held up. These are all new things for him within the past week. Here are a few newer pics of him.

Ian laughed today!

Home again

We came home again yesterday! lol. Hoping to stay home for awhile this time lol.

Back in the hospital again

Just a quick entry to let you all know we are back in the hospital. I ran home to grab a few things we needed while billy watched the baby. Ian has NEC again. For now he's on iv antibiotics and fluids and they are holding all feeds. We are hoping that it will resolve itself without surgery. I'm not sure how long we will be in the hospital this time but i'll try to update as i can. Hugs to all, please keep Ian in your prayers.

We are back home

I haven't been able to update lately due to being at the hospital with Ian. As in my previous post, he had surgery on June 13th then again on June 24th. He ended up back in surgery again 3 days later on June 27th due to his abdomen being very swollen again and the ultrasound showed it was full of fluid and clots. They cleaned out his abdomen and placed a drain in. The drain has since been removed and he gradually started back on feeds. He was finally released on Tuesday (July 15th) after 33 days in the hospital. He is doing much better now. His belly is soooo tiny compared to what it used to be. He is having issues with constant diarrhea right now. After the 5 abdominal sugeries he has had, they have removed a total of almost 3ft of small intestine, leaving him with 75cm (almost 3ft) remaining. We will be following up with several specialists. He has hydronephrosis of the left kidney and a cyst on his right kidney that they are not concerned with. His incisions are all healed up well. He still has his central line in for now, and i flush that once a day. They will take it out next monday after his surgery (circumcision). They left it in to use to put him to sleep for the circ. It is so nice to finally be home again. He's getting to be such a big fella..he's 9lbs 10oz now. On tuesday he was 232 days old and had spent 198 of those days in the hospital, 34 at home... Crazy huh? Hopefully we can stay home and grow and have some sort of a "normal" life now. Thank you all for your continued prayers. I'll post pics in a few days when i get them all up on the computer. Until then, here are a couple i put on tonight from the other day.

Are you wondering where we've been?

We brought Ian to the emergency room at Children's hospital on 6-13-08 due to bloody stools and distended abdomen. He ended up having to have surgery on his intestines on friday the 13th. He spent 3 nights in the PICU then was moved to a reg room where we spent the next 11days recovering well. His belly started getting distended again and having black tarry stools so they re-xrayed his belly and found that the portion that was causing the problem resulting in the other surgery had gotten worse and with each xray was dilated. They then had to go back in and do surgery again on his abdomen on Tuesday, June 24th. At this time, they removed almost 2ft of small intestine. They took out 50cm, leaving him with 75cm (almost 3ft). If this 4th abdominal surgery doesn't resolve the problem, then the surgeon says that it is something that just cannot be fixed surgically. So, hopefully everything will be okay after he begins healing. If not, the plans are to be referred to a specialist in Ohio or Nebraska. There is a place that specializes in Motility in Columbus, OH and a place that specializes in short gut in Nebraska. We just moved from the PICU to the floor today and there just happened to be a computer across from his room so i was able to post an update. He's having alot of pain but getting it controlled with meds. His belly is distended again and we are waiting on xray results to find out if it's just normal swelling from fluid from the surgery, or if something else is wrong. I'll post as i can. Please keep him in your prayers.

Christy

A few new pics

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

Ian is sick

Ian has a cold. He's got a really moist cough and wheezing. They sent off cultures to test for flu & rsv...but they aren't back yet. He is only getting the bottle like once a day now to "attempt" to eat from it. They are putting his feeds down the feeding tube (45cc every 3 hours). The developmentalist and speech pathologist saw him this week and think he's too sensitive and wears out too easily, so they think making him drink from a bottle right now is too much. He's up to 8lb 4.5oz & 20in long.

Ian is off of oxygen!

I walked into the nicu today to find Ian sleeping in his bouncy seat with no oxygen on. The nurse had pulled it off early this morning and said he's done fine all day without it and doesn't need it. They increased his feeds to 20cc every 3 hours this morning, then this afternoon the dr increased them again to 25cc every 3 hours. I asked the dr "if he continues to do well like this and no problems arise, when might we be looking at taking him home?".... Doc says "well, we want to get him to 2oz every 3hrs to get off of the tpn....sooooo....maybe by the end of the week"..... I about fell out of my chair! I said "you are kidding" , he said "no, maybe early next week, we don't want to push him, but maybe by the end of the week". I just cannot believe it, it doesn't seem real.

Ian's 4th surgery

Ian had surgery Friday to place a new central line. Everything went quick and went well. He was put under and placed on the ventilator during surgery, but came off the vent in recovery. He was wide awake the rest of the day, acting like it was any other day. No problems, didn't even make him sleepy for the day. He's now on bottle feeds of 15cc every 3 hours. He's down to 23% oxygen at only 1/4 liter. He's doing so much better. I hope things keep going so well for him. He'll be 5 months old next sunday! If things keep going well, hopefully he'll be home within a month! He got up to 8lb 5oz but lost some weight the past few days but still weighs 8lbs. This pic of him is less than an hour after surgery lol...... See, he just thought it was a reg ole day!

Update

Well, i've been sick for a week now. I had to stay away from Ian last weds/thurs/fri/sat. I finally went to see him Sunday and Monday and wore a mask ( still have a cough but felt better overall). Then Tuesday as i left work, got sick on top of the cough. So now i have an aweful stomach bug with major cramps and can't go see him again. So frustrating! He's now on full strength formula (neocate) at 5cc/hr and tolerating it well so far. He weighs 8lb 3oz. He's awake alot of the day anymore and is busy checking out his surroundings. He's a big boy now and he's almost 5 months old. The baby shower was last saturday and i got alot of nice things for him from friends and family. I was worried about not having things ready for him when he was released (from being off of work for so long and no money to buy the things he'd need), but all turned out well and everything is ready for him to come home and snuggle. I pray he tolerates the feeds well this time and he doesn't have another setback. The nurses told me that in all the years they have been doing nicu, they have never seen a baby survive NEC twice and that many don't survive it the first time. They say he has some destiny laid out for him ...for him to have made it thru so much. He's a little miracle baby. he's down to 21% oxygen at 3/4L....21% is considered room air.... The nurse the other day said she expects him to be completely off of oxygen soon. I was surprised to hear that, because they told me a few months ago to be prepared for him to be home on oxygen for about 6 months. He is getting his baths in a reg baby bathtub now (that i took up there), because he's getting too big for the lil pink bucket.

Cold Cold Go Away....

I have a bad cold today! It's frustrating because I can't go to the NICU sick. Billy is sick also...so lil Ian has no visitors and i feel so bad for that. Hopefully this will all go away soon so i can get back to spending the day with him.

HUGS!

Alisa

ALISA!
Yes he is getting big, he's up to 7lb 12oz now!! It's so good to hear from you. We miss you guys alot! Unfortunately this is the best place for him right now with all of his issues....so it looks like we'll probably remain at children's until he comes home someday...in case any more belly issues pop up (as he now has nec again). Hope you are doing well....Getting a cute big belly yet? If you have an email address, you can email me anytime as well at chevy_chic_@yahoo.com ....Didn't have any other way to send a little note your way, so you're special enough to have a blog just for you! lol. HUGS!!! And Ian likes his bouncy seat! :) Also, if you ever get bored and wanna come see how big he is, just let me know...I'd be glad to take you in to see him! Have a great weekend!

New Pics! 4 months old

Yesterday Eating a dum-dum lollipop:

Today before his bath:

All dressed after his bath:

Watching his mobile:

Laying on Mommy: