Ian's Mommy

Ian is...........

2009-06-11T09:52:00.001-05:00

WALKING!

He's doing great!! He's now 18 months old and is up to 21lb, 29in long. He says dada, daddy, dog, doggy, duck, quack quack, book, yuck, that, what, huh, nana, good. He recently started saying momma while he's playing, but doesn't call me momma yet. Actually, he crawls after me saying nana nana nana lol.

Eyes: Still wears glasses

Ears: Now has perfect hearing, no loss like they had thought.

Kidney, Liver, Spleen: Still enlarged but gradually resolving themselves.

Gut: Tolerating happy meals! hehe He can eat anything and tolerates it all. And he likes everything, i haven't found anything that he won't eat.

He definitely has a major attitude and i suppose rightly so....but whew where do they learn this? He's strong and has an obsession with slapping us in the face, taking our glasses. I haven't figured out how to break him of that yet.

So, besides going to occasional check-ups, he's a normal baby these days. No pertinent health problems and it's wonderful. It's so nice to not have to worry anymore.

Hugs to all!
Christy & Ian

Finally another update

2009-02-18T03:38:00.005-06:00

I know it's been forever since i've updated this. I guess i just let life get too busy. Ian is doing greattttt these days! He is up to 17lb 15oz (as of 3wks ago) and 27 1/2 in long. He had his 9th surgery in January. This one was so minor compared to all of the others he's had. He just had tubes put in his ears this time.

He is:
1. Sitting
2. Pulling up
3. Saying dada and dadadee
4. We were able to switch his formula from Neocate to Alimentum and he tolerated it great!!! It's been over 3wks now.
5. We started feeding him textured foods and chopped table foods last week and he has done so wonderful with them so far!!! This was such a huge step for him!
6. His vision got a little worse so we got stronger lenses 3wks ago.
7. His liver and spleen remain larger than they should be but are gradually resolving themselves, it's better at every checkup.
8. His kidney continues to resolve itself as well.
9. We go next Monday to have his hearing rechecked and a followup from the tube surgery.

He's doing so great! He's like a normal baby these days. He's still smaller than he should be, but he's still growing each time we go back to the dr. He's about the size of a 6-7month old right now and is 15months old. He has been home for 6months solid now without being hospitalized. Every since they removed that last portion of his intestines 6months ago, he's done great. There had been this dilated portion that they thought was okay, but finally decided that maybe the nerves on the inside were too damaged to work right, so they removed it.. and also during the surgery, found where a portion had come off and fell onto the gallbladder and attached itself, and began to grow (formed it's own blood supply), so they removed that as well. And since then, he's tolerated everything we've thrown at him. He's even had the lil star shaped puffs, and some of mommy's cooking...which he loves of course.. who wouldn't right? lol. He's so much fun, so expressive, and he has a laugh that i wish i could bottle and sell. It's hillarious and tooo freakin cute!! I still stay home with him through the week and work weekends while billy watches him. He has entirely too many toys for one kid! lol. He's finally wearing 6-9month clothes now and can still wear a few of his 3-6month outfits. Crazy for a 15month old huh? lol.

If you know of a another nurse with a preemie or special needs infant/toddler who's in need of someone with a medical background to watch her baby while she returns to work, or looking to watch one while she stays home, switch off childcare or something, send her my way. Maybe we could help each other out somehow. I know there must be someone out there somewhere in the same situation we are... unable to use daycare and too leary of just anyone watching the medical issues (not that he has that many anymore, i'm just leary).

Have a great week!
Christy & Ian

Merry Christmas!

2008-12-24T10:50:00.005-06:00

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!

2008-11-27T23:27:00.003-06:00

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

2008-11-05T21:23:00.001-06:00

Some new pics

2008-10-28T09:39:00.002-05:00

Ian & Daddy (I LOVE this pic!)

He just started making this fishy face yesterday lol

MILESTONE!!

2008-10-21T11:05:00.003-05:00

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

2008-09-17T22:58:00.001-05:00

Ian's hearing test follow-up

2008-09-11T22:44:00.002-05:00

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 :)

2008-09-02T00:35:00.002-05:00

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!

2008-08-06T20:11:00.002-05:00

Home again

2008-07-31T12:29:00.001-05:00

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

Back in the hospital again

2008-07-26T02:29:00.003-05:00

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

2008-07-18T01:17:00.003-05:00

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?

2008-06-26T16:25:00.003-05:00

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

2008-06-06T10:34:00.002-05:00

Ian is 6 months old!

2008-05-29T00:05:00.003-05:00

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. :)

2008-05-24T21:57:00.000-05:00

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!

2008-05-20T09:49:00.001-05:00

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!!!

2008-05-09T23:14:00.003-05:00

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!

2008-05-08T11:12:00.002-05:00

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

2008-05-07T22:50:00.001-05:00

He's eating his bottles better!

2008-05-05T23:36:00.000-05:00

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

2008-05-02T14:26:00.005-05:00

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

2008-04-26T13:31:00.002-05:00

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!

2008-04-21T20:09:00.002-05:00

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

2008-04-20T23:02:00.003-05:00

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

2008-04-16T17:41:00.002-05:00

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....

2008-04-09T22:46:00.001-05:00

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

2008-04-05T15:46:00.005-05:00

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

2008-04-04T22:34:00.004-05:00

Yesterday Eating a dum-dum lollipop:

Today before his bath:

All dressed after his bath:

Watching his mobile:

Laying on Mommy:

Update for 4-3-08

2008-04-03T20:38:00.002-05:00

Ian continues with "resting" his intestines. (No feeds since last friday, repogle suctioning stomach contents). He's up to 7lb 12oz. He's pretty fussy lately, partially because he's hungry, then there's also the infection (necrotizing enterocolitis), and the antibiotics (one of which makes ya feel like crap). They have "volunteer cuddlers" that have been coming in and snuggling with him while i'm not at the hospital the past few days. His bottom is healing better now (had been excoriated). The surgeons are intending to try starting feeds again tomorrow if the xray in the am & labwork still look okay. He loves his new mobile, and often stares at it & his big pablo balloon. Here's hoping everything stays on track and gets better!!!

2008-04-01T23:25:00.000-05:00

Sad news

2008-03-28T12:00:00.001-05:00

Ian's stools started having blood in them. They switched his pregestamil to neocate yesterday to see if it was an intolerance to the formula.

Dr. S just called me and said that his crp levels (that show infection) shot way up and his blood count went down. They did an abdominal x-ray and Ian has NEC (necrotizing enterocolitis) again. For now, they stopped all feeds and dropped a bigger tube to help decompress his belly (pulls air and any fluids off the stomach so they can't go thru the intestines) and they are going to watch it with x-rays...continue antibiotics...and give a blood transfusion.

I'm hoping that since he's bigger, maybe he can better repair himself this time than last time but once again, it's a wait and see. I thought we were finally in the clear because he was doing so good. This is very disheartening and it makes me sick to my stomach to think of starting all over. It hurts to think he may have to go thru so much again and the thought of him laying there feeling so hungry but can't have anything. It's just heartbreaking.

Ian is 4 months old today!

2008-03-27T14:36:00.003-05:00

Ian is 4 months old today! This is day 122 of his NICU stay.

At Birth (Born at 25wks):
2lb 4oz
13 3/4 inches

At 4 months (2 1/2 wks old adjusted):
7lb 6oz
19 inches

He's had RDS, BPD, MRSA, ROP, NEC, PDA, Ascites, Prolapsed ostomy, hypothyroidism, and been on the vent for the majority of his 4 months.

He's had 3 surgeries:
PDA Ligation
Exploratory Laporatomy - with placement of mucous fistula & jejunostomy
Exploratory Laporatomy - with takedown of fistula & jejunostomy, Disection/Resection of intestines (lost 25% of his small intestine), appendectomy, repaired umbilical hernia.

Today:
He's having lots of poopy diapers!
He's on slow feeds of pregestamil at 4cc/hr continuously. They will very slowly increase these up until at full feeds. He will remain on TPN until then but they will start to decrease the TPN once he's up to 10cc/hr feeds.
He's on antibiotics for the MRSA
He's on Synthroid for the hypothyroidism, Fentanyl for pain, Phenobarb to help deplete bilirubin, Fluconozole for fungal prevention (from mulitiple abt's), Aldactone for edema, Albuterol breathing treatments, CPT (chest percussion therapy).
He's in a crib and much more awake these days.
He's fussy and spoiled already lol

At Birth:

A few days old:

Today:

Off the vent again!

2008-03-22T00:42:00.002-05:00

As i walked into his room this morning, the dr said "just in time mom"... i peeked around him to see Ian laying there getting a nasal canula taped to his cheeks.... The vent is OUT!
So far, he's doing well on vapotherm at 4L and 60% oxygen. They were going to start him on Pregestamil formula by feeding tube this afternoon (i had to go to work). He was sooooo wide awake, it was so cuteeeeeee! I said "are you just too excited to sleep?" After 3 long weeks on the vent.... I got to hold him today!
He was noticeably alot more yellow today (jaundice from the tpn causing liver problems)...but overall he looked soooooooo good!

Today's nurse is a royal BI*CH!

2008-03-18T23:56:00.003-05:00

Sorry, this is a longgggg one!So my day at the nicu started off very bad and continued to take a downhill slide the rest of the day. UGH!I walked into the nicu today and Ian was awake. It was so cute... i started talking to him and said "well what are you doing awake little man, you aren't ever awake" and reached in to touch him...

NURSE: You better put your gloves on!!
ME: What? We've been doing this for 3 1/2 months and never had to wear gloves with him. Noone's been concerned so far.
NURSE: Wellll, he is infectious! You can't touch him without gloves!

At this point i'm trying to figure out why there is such an abrupt change and a tacky nurse... so i say

ME: Is JHACO (the people who investigate hospitals) here or something?
NURSE: "well yes actually, they could walk in here at any minute today"

So i sit down and i steam... I'm so ticked off that i can't think of how i'm going to tell this lady that I'm not going to wear gloves with my son and let him never feel my skin , nor me his! So i stood back up, walked to his bed and said....

ME: Just for the record, i'm not going to wear gloves with MY son. There's no reason for me to start wearing gloves now, when he's had MRSA for 3 months. Half of your staff doesn't even wear them and i'm not going to make things all proper just because you guys are expecting an inspection! If you would like for me to speak with your DON, i'd be more than happy to.

NURSE: FINE! ... She then storms out of the room and gets on her phone.

She comes back in and tries to lay a guilt trip on me saying "Did noone explain to you guys about this infection? Do you not know how it is spread?" (Told her i was a nurse, i knew all about it) "Well exactly, you are a nurse, i would think you'd care enough for your own patients to wear gloves and not take it to them!"

Next thing i know, an infection control nurse for the hospital comes in to explain MRSA to me and their policies. I repeat to her that the staff doesn't always wear gowns and gloves..why should i with my own child. He will have this for the rest of his life and what? do tehy think i'll wear gloves for the rest of his life? I also explained to her i knew all about it and worked in healthcare and was most likely a carrier myself (most nurses/dr's are). The infection control nurse agreed that parents do NOT need to wear gloves...that the baby needs to feel it's parent's touch. She did ask that we wear gowns to keep from spreading it if it got onto our clothing (and wash hands)... to other areas of the hospital. (NO PROBLEM HERE!) I explained i have no problems wearing a gown..that we'd been wearing them every time, but the staff stopped wearing them, so I figured why should i? He's MY kid! She said she understood and would be taking this to the DON, Physician, and Administrator of the hospital. She also asked that I stop others and make them gown up, glove up, etc and call her if needed to fix the situation. I explained to her that THAT is a full time job that i was not going to be doing, they can train their own stafff!

Next thing i know the nurse comes in all pissed off cuz she has now been informed that i don't have to wear gloves and agreed to gown up.. and from now on, she has to wear a gown at ALL times when she is in the room LOL..... She is ticked off and complaining that it's too hot to wear that gown all day! (i'm just cracking up inside) She got herself into this predicament!

The rest of the day she is such a *****! Every time i go near Ian or talk to him she glares at me... He starts to desat almost every time (must be getting sick cuz this is unusual for him). She makes me feel as if i'm doing something TO him to cause his desats. I felt so unwelcome and like i should not even be going near this baby... who happened to be my baby.. but she made me feel so aweful.

After he was doing good for awhile, i started to clip his nails. She said "WHAT ARE YOU DOING?"... i explained i was clipping his nails and she said "HE DOESN'T LIKE THAT!" (how the heck would she know, she's never taken care of him!)... I see he's at 89(sat) and just gave up and said "maybe tomorrow buddy". Then she pops off sarcastically "i'd wait til he's not sick!"I left... i just was so stressed out i was about to cry.

I came back as she was leaving shift (complaining about me of course but who cares). After she left i told the night nurse (a sweetheart) ... I HATE THAT NURSE, SHE'S A B****!"... and she makes a face as the nurse walks right in from behind me LOL..oops lol.

So, in his Chart is written several times he desatted...with reason down listed "MOM".... WTH? She also charted that she instructed mother to wear gloves with the infant and mother refused so she reported it to chg nurse and infection control nurse.

I will be going to the DON tomorrow and informing them that she is never to work with my son again!

It is the worst feeling in the world to feel like you shouldn't talk to or touch your own child... Like you are unwelcome and should leave immediately.

Let's end this on a good note though:

Ian has lower settings on the vent (25bpm, peep 6, pc 14, ps 12, and down to 25% oxygen!!)

His incision is covered and not draining at all. The surgeon believes now that it was an abcess that is resolved. Says he can't know for certain but that if it isn't, he will get pretty sick and they will know then. I figure it's all good though! His abdomen is still very round but Dr. S says that's from his liver. (continually damaged by the tpn). He says for now they will try to wean him from the vent, wean his pain meds, then work on starting low feeds. I asked "if he gets off the vent and starts feeds and accepts them okay, how much longer before he can come home, an estimate"... he says he has no idea... at least a month, maybe 2, maybe 3...just doesn't really know.

The eye dr saw Ian today and said his eyes are getting better and that the ROP is regressing!

I did get to hold him up in the air while the night nurse changed his bed and he just kept looking around while he was in mid air hehe

I'm sure tomorrow will be a better day! One can always hope!

Monday

2008-03-17T23:39:00.002-05:00

They took the wound vac off today and placed a dressing on his incision (aquacell & gauze). This evening when i saw it, there was no drainage on the new dressing. Sounds like a great sign to me!! I can't wait to talk to the Dr tomorrow and see what their thoughts are and what the next steps will be. He's down to 25bpm on vent, peep 6, 30% oxygen, can't remember the pc & ps (but i mainly put this for a reminder to myself and for alissa lol). They decreased his Versaid today, his fentanyl yesterday... to me, these are all signs that they will be weaning off of the vent very soon. The reason for this thought is ... he can't be on Fentanyl or Versaid while off the vent, because it would sedate him and prevent him from initiating breathing as well on his own. I can't wait for the vent to be gone... I miss holding him and letting him do something other than lay there! I wanna snuggle so bad! :)

Improvement to Incision!

2008-03-15T13:22:00.002-05:00

I went to the hospital early this morning so that i could be there when they changed his wound vac dressing (changed every 2-3 days). The incision looks soooooooo much better!!! It's very clean and closing in... the center (where the main leakage that they thought was the intestines then maybe an abcess) is almost completely sealed over...and the sides still have a bit to go but look great! This being the case, i asked the surgeon "with the center closing where the main problem was...does that make you think it was actually an abcess rather than the intestines and it's now resolving itself and will be fine?"... To which he wonderfully said "i think that may be it....it's looking wonderful!"..... I hope this is the case, and it looks like it just may very well be! YEAH!!!!! I am so glad to see such quick progress. Next drsg change will be monday or tuesday....and i bet it will look incredible! Just had to share my good news!

He remains on the vent at 35% oxygen, 30bpm, peep 6, pc 18, ps 12. He gained a little weight in edema and is now 7lb 11 1/2 oz...so he received lasix this morning to help with that. He's off of lipids for awhile because his triglycerides were really high. Overall, i'd say he's doing extremely better! :)

Christy

He's Shrinking!! ha!

2008-03-12T18:32:00.003-05:00

Ian is getting less and less swollen each day! He is steadily losing weight which is good because it means the edema is going away! :) The docs changed the wound vac dressing today to see how it looked after 24hours and they said the incision already looked better and much cleaner! YEAH!! They also mentioned it could possibly be an abcess instead of intestinal leak but that they just don't know yet. I asked how they can find out and they said "in time, we just have to wait and see".... So we'll wait, and we'll see.... Maybe we'll luck out for once! In general I feel ian looks much better! They had to increase his sedation because he decided to become more active and start pulling at all of his tubes LOL.... Goooo ian! That's just that fiesty fighting attidude of his that's helping him pull through every obstacle they throw at him.

Sometimes i feel like people will think i'm a drama queen because every day is different, every thing that happens is different, and it seems i don't get to give good news all that often. Oh well, if they do, they can come live my life for a couple of days and see what a crazy life we lead these days lol.

Hugs to all!

Monday, January 21st, 2008

2008-03-11T21:27:00.005-05:00

Ian remains on the vent (65% oxygen, 40bpm, peep of 6, pressure control of 22, pressure support of 20). They are now doing bicarb suctioning to break down the thick secretions but they are no longer "bloody". He looks sooooo much smaller today..still swollen but not nearly as swollen as he has been lately. He's down to 7lb 12 1/2oz as of this morning. They put a wound vac on his abdominal incision today. They still aren't sure what we will need to do as far as when the next surgery will be. For now their plan is to heal the incision (it should heal up all except for the fistual that has routed it's way thru the incision). The intestinal leak has actually created it's own path to the surface and will form itself into a fistula. If this portion is at the lower end of the intestines, he'll be able to get feeds, get off TPN and put a bag over hte fistula. In this case, surgery could be put off til he's much better, even up to a year possibly. If it's at an area where he will not absorb much, the treatment will be different. After the incision heals, they will do tests on the intestines and fistula to locate the leakage and any other problems, then they will get more of a plan together. So, it's another "wait and see" kinda thing. Sucks, but he's still here, and at least it made it's way to the surface rather than spilling out into the abdominal cavity. We miss the docs/rt's/nurses at our home nicu, but it looks like we'll be here at children's for a lot longer than expected, so most likely the duration of his nicu stay. At least they have the surgeons here and can address things quickly. On a good note, Ian is more alert today and moving around more, looking better :)

Had to have a hat to match the booties. Added a brim for style! lol

Bad News

2008-03-10T21:46:00.001-05:00

Ian has poop coming out of his abdominal incision. The surgeon disagreed with me that it was poop (brown mushy stuff that reaked of feces) and insisted it was melted Aquacell (treatment they put in it). Upon closer inspection, it was confirmed... it is poop. His intestines are leaking, but from where, noone knows. What will they do? Noone yet knows. I am so frustrated and so tired of nothing going right for him. This isn't even a matter of me wanting to have him home. It's a matter of me wanting him to not have to go through so much and have so much pain and discomfort. He's been through so much in his short little life and he still has so much more to go through. I thought maybe we were finally through the woods with his intestinal surgeries, but we aren't and that absolutely aggrivates me. These surgeries are so major and so scarey, and the recovery is soooo very hard. He still hasn't yet recovered from the past surgery and it has been 10days! It sucks! It simply sucks! Why can't he catch a break, just one break? It just tears me up inside to know he has to go through this surgery all over again and then wait and see if this happens again. It's not fair! Hasn't he fought long enough? Hasn't he shown he wants to be here? Doesn't he deserve a break from all this pain?

Due Date

2008-03-09T22:15:00.002-05:00

Today was my due date for Ian to be born. He is 104 days old today! That's just crazy!

Booties by mommy! :)

2008-03-09T12:34:00.002-05:00

I worked and worked and finally figured out how to crochet baby booties. These are a bit bigger to stretch over his O2 sat and bandages on his heels...So they look like lil boots (and lace up) lol.

Forum name change

2008-03-08T21:34:00.003-06:00

Our name has changed, but our site is still as great as ever! Please visit our site at http://www.journeythroughmotherhood.org/

Update

2008-03-08T10:23:00.002-06:00

It's now 8 days post-op. Ian remains sedated on Fentanyl and Versaid drips. He is still really swollen. He's now 8lb 10oz with all the fluid on him, he was 7lb before surgery. His ventilator settings are down a bit from earlier this week. He's now at 35bpm, peep of 7, Pressure control of 25, Pressure support of 23, and 45% oxygen. He has not had to be bagged as many times lately, just once in the past 24hours. His blood gasses are staying pretty good (ph around 7.4, CO2 around 45-58). His incision is still draining. The surgeon told me yesterday that is hoping that the draining is just a superficial infection, but that his worst fear is that it may be his intestines leaking at one of the places he reattached them. He said they will watch it for a few days and if it continues to drain much for several days and starts appearing like what would come out of the ostomy bag he used to have, then he'll know which way to go. If it is a leak in the intestines and it's at the lower distal portion that they fixed, he says it should tunnel to the surface where they could actually place a bag over it, start feeds on him, and when he gets better, go back in and do surgery again. It's all a waiting game to see which it is. We'll pray that it's just a superficial infection because i sure don't want the little guy having to go through it allllll over again. I really miss holding him and seeing him so alert...hopefully soon, everything will resolve itself.

If you are reading this Alissa, we miss you guys over there!!!!! Say hi to baby Ryan for me! :)

Take care all!

Day 100 of the NICU stay

2008-03-05T17:18:00.006-06:00

Ian is 100 days old today!!!

My friend Julie says "oh he's so old...that explains the bald head and diapers" lol. He's still recovering from surgery. His ventilator settings are still high (40bpm, peep of 8, pressure of 29). He's down to 50% oxygen today from 100% yesterday. He is still really swollen, his abdomen and chest are very swollen. The surgeon had to reopen his incision today to allow it to drain and said alot of puss came out when he opened it. They repacked it when i was there and it's pretty yucky looking. He was throwing his arms around and wiggling, cuz hellloooooooo i'm sure that hurts!!! I asked the surgeon if he could start giving him a bolus of Fentanyl before they do that and he agreed and said they will from now on. He opened his eyes a couple of times this afternoon but can barely open them due to his face being so swollen. Was still cute regardless. I put my arm around his back with my hand on his shoulder (almost like he was being held) and was talking to him, and he smiled a couple of times awwwwwe :) Blood gasses weren't perfect, but were pretty good today. His lungs keep doing poorly and parts will collapse. They did an ultrasound today to see if he had fluid building up around his lungs compressing them more, but as far as the nurse knew (Not that this one knew much at all!!!), it was negative. They called a code on him this morning.. his oxygen dropped and she couldn't get it back up..... reason: she wasn't careful when she turned him, and extubated him! So, they reintubated him. They are getting alot of bloody secretions from his lungs by suctioning... mostly because of irritation and having to be reintubated so many times. (3 times so far in the past week that i'm aware of).

So that's the update and rant for today.... We'll see what tomorrow brings!

HUGS to you ALL!

Christy & Baby Ian

Before surgery:

Directly after surgery:

2 days post-op (alot of swelling):

And here's his poor tummy incision :(

Surgery Update

2008-03-01T23:33:00.001-06:00

He's now 32 hours post-op and still with us He's pretty swollen and having alot of respiratory issues. He is on very high vent settings, but his oxygen rate is down from 100% to 70% at this time. The alveoli in his lungs keep collapsing.. he's getting albuterol, chest percussion therapy, and suctioning, changes in position to accomadate.. all for that. He dropped really low this morning and they began bagging him but nothing was helping so they ended up reintubating him (other had come out of place). His blood pressures have remained stable since surgery. His blood gasses have been better all day (not perfect , but better than yesterday). The surgery:He went in for surgery at 10:40am yesterday. At noon they had just finished placing the central line and were beginning the abdominal surgery. They had trouble getting the central line in anywhere, tried 3 times on his left chest wall, then once to the right chest wall, and ended up with it in the right side of his neck. The surgery then lasted til about 2:30pm. (total of 4 hours for both). It ends up the intestine at the mucous fistula was all massed and needed to be removed. There was a portion that was dilated to about the diameter of an egg, instead of a small pen as it should be that needed to be removed as well. They think this area was the initial problem and that it may have even been a congenital defect. They also thing that since the infection in this area couldn't come out up or down, it was making him sick all the time with infections and such. They removed the two sections, a total of approximately 1 1/2 feet (or 45cm) of intestine. This was equal to between 20 and 25% of his intestines. They also repaired two perforations. They removed his appendix while in there as well and repaired an umbilical hernia. The physician stated that a child can actually have 75% removed and still go on normally, just not more than that. He got to keep 75% of his!!! They say as long as he heals and the intestines don't start to leak, he should be okay. We just have to get him to pull through this aftermath and he should be okay. He has a big incision across his abdomen. Hopefully in the next couple of days the fluid will start coming off and that will help with the respiratory issues, then maybe start weaning down some vent settings. I'm amazed at the news of repairing his intestines... i really honestly wasn't expecting to hear that. We definitely cried happy tears of relief when the surgicall nurse called mid surgery to tell us they were saving most of his intestines. Thank you all for being here for me, & for praying for Ian. I'm gonna head to bed so i can get up early and go back to the hospital. We are not yet in the clear, but the sky is getting a bit less cloudy HUGS!!

Surgery is Scheduled

2008-02-28T18:45:00.001-06:00

Ian has been scheduled for surgery tomorrow morning (friday) at 10am. They ran the dye study today rectally and then attempted to go from the top (mucous fistula) but the tiny feeding tube they used wouldn't go through it, so they don't know if it's too narrow at this top portion or not. It wasn't very confirmative on how well the surgery will go. The surgeon has a back up plan to do if he is still unable to fix the intestines at this time. He's hoping he can go in there and save all of them and separate them, find the blockage and fix it...and reconnect his bowels. If the mass of small intestine is stilll too bad to separate and fix at this time, he plans to take the short portion that is the jejunostomy and connect it to the short portion he located on the test that connects to the large colon, and connect those two. The effectiveness of absorbing nutrients will depend on how much he can extend at that time. It ends up the Large colon is all okay... it's the Illieum and Jejunum that are a wreck. I though, GREAT, that's good, but was informed that no, that's the problem... All of your absorption of nutrients comes from the small intestine... the large colon only absorbs water. (of course being a nurse i should have remembered this lol). Dr. L says that this surgery will take at least 2 hours and good case scenerio, he'll be on the vent for 7-10 days post-op. He says it is going to make ian a very very sick little baby and it's going to get pretty bad before he starts to improve back. I asked him the risks of losing him, and he doesn't exactly know at this time, but says they are lower than last surgery. He says he doesn't expect to lose him on the table, but that the next few days will be the big steps. I'm trying to stay strong for him and not think about the bad parts, but it's really scarey. I just keep remembering that phone call after his last surgery and how bad he was and how we almost lost him. I know my strong boy can fight through this, surely god would not put him through so much and let him pull through, just to take him now. I will try to post updates as i can...My appearances here for the next week or so will depend on how he does and how he holds up. Hopefully all will go well and I'll update you guys as i come home to grab sleep and showers. Please remember us at 10am tomorrow...we need your positive thoughts and prayers! Here's to hoping my little puzzle pieces are all put together by tomorrow afternoon!

Hugs to u guys!

Christy

Surgical evaluation

2008-02-27T17:23:00.002-06:00

Well i feel so much better today! I was a bit freaked out about it all last night. Ian is now at children's hospital. He's been seen by the whole surgical team and i explained to them what's been going on. They think that the excess abdominal distention caused the prolapse of intestine into the ostomy bag, as well as taht the distention is caused by Ascites. The ascites is caused from liver damage due to long term tpn (his iv nutrtition). [When the liver cannot function properly, it releases fluid into the abdomen..thus causing ascites...causing the abdomen to be really swollen.] So, they are doing a distal study (running a dye substance through his fistula to see how it routes throughout his intestines) in the morning. They are still waiting on Dr. L to get back in town to consult, but things are stable for now and Dr. P is on top of it getting everything ready. She says the surgery will most likely be very soon and since it's been almost 7 weeks now, it is about the time they intended to do it anyhow. IF when they get in there, they still cannot fix the mass of intestines, she says that if they can find a long portion of intestine useable, they can reroute that to the stomach and create new stomas....this way he'll have more length to absorb nutrients and get off the tpn. In that case, they would just wait several more months til he's older to completely fix and reattach everything. For now, they say the prolapse will be okay and they will monitor it, it's not strangulated or anything. The dr's say the surgery will be tough and will be a hard recovery and will get pretty bad before we see improvements. But, i say he was much much sicker last time and pulled through, so he will this time too! I'm feeling much better today knowing something will be done soon to help him, and that they are testing to see what they "can" see prior to going in blindly.

Please Pray for Ian

2008-02-27T01:52:00.001-06:00

I went to see Ian again late tonight. He's up to 7lb 1oz. His abdomen has always remained distended since the surgery, but the past 2 days has been a bit bigger than normal. Tonight when i went in the nurse informed me that they had stopped his feeds again because he was having some bloody discharge from his jejunostomy. I unfastened his clothes to check his abdomen to see if it was more distended and said "OMG what is wrong with his belly?!?!" His tiny pink stoma is now huge and long...What has happened is that the pressure in his abdomen has now caused the intestines to actually protrude through his stoma inside out... to the outside of his body. I immediately asked to talk to a Dr. The nurse called the Dr and he spoke with me on the phone saying it was the pressure causing it and claimed that this isn't exactly abnormal. What???? He said the surgeon is still out of town but they will call him again tomorrow and see when he may be able to get to this hospital to see him. I'm extremely concerned at this point that they are waiting too long... They waited too long last time and the damage was so severe that the surgery was extremely unsuccessful and they almost lost him. I asked that he call another surgeon and get an opinion on wether this was truly okay to hold off or if something needed to be done soon. He called back saying that the surgeon on call said to transfer him to Children's hospital, don't wait for the other surgeon. Soooo, he will be transferred back to children's first thing in the morning (mediflight team is busy and it's the soonest the other nicu can have a bed open for him). He is stable tonight, he's doing okay, i'm just so worried about this new issue. It's so hard! Why can't something work out right? I called in to work for the rest of the week and told them i'd let them know when and if i could come back within the near future. I guess it's all too soon to be working, i dunno. Everything keeps falling apart when it's finally going well. I'm very scared for him and I hope they can find out what is going on and fix it and fix him soon. This whole intestine thing with him is so scarey. It's like there's never been a "calm" for them to "recuperate" and noone knows what's going on in there until they open him back up. I just held him and cried and cried cuz i'm so scared and frustrated at the not knowing... It just feels like it's one thing after another and noone knows what's going on or what will happen. I'm okay with sending him to children's this time, that way i can say "i want to see a surgeon right now" and it will be possible, whereas at this nicu, there are no neo surgeons...they all have to come from children's to eval the babies. Please pray everything works out for us and Ian's problems can be resolved. Thank you guys for being here for me the past 3 months. Ian is 3 months old today. Please please god give me another 3 months!

Ian is off the vent again!

2008-02-22T19:28:00.002-06:00

Ian came off the vent yesterday. He's now on a nasal canula at 3.5L (vapotherm) and doing well. Still no word on the next surgery. He's now 6lb 11oz!!!! And not even due til next month! Crazy huh?

Oh and i thought this was too funny....I was holding him the morning after they reintubated him and looked down and started cracking up so i snapped a pic.

COINCIDENCE???? Or is he just telling us how he truly feels about having that tube back down his throat???? LOL.

He's had a set-back

2008-02-17T23:39:00.000-06:00

Ian was not doing well last night and had to be placed back on the ventilator. He was lethargic, not very responsive, and had poor color. They ran his blood gasses and they were very high, so the Dr. ordered him to be back on a ventilator. The labwork points toward an infection and he's already on antibiotics (has been for several days) for that. Right now most of the time, he's letting the ventilator do all the breathing for him. I guess he's wore out from the infection, whereever it is. He also was staying too cool, so they have had to take him from his bassinet and place him back into a warmer. It's so hard to see him set back and feels like we are at square one again. I'm so tired of seeing him hurt and go through so much. It just isn't fair. Hopefully he will start feeling better soon and start doing well again.

At this point, we are waiting for him to be ready for his next surgery on his intestines. They do not know what shape they will be in when they actually open him up. I'm hoping and praying that his intestines have healed in a way that they can be separated and save the majority of them. If they are unable to save them, or a good portion of them, then he will have to be go on a list to receive a bowel/liver transplant. If able to fix them with the next surgery, i'm not sure if they will reconnect his bowel at that time, or if that will be done in a separate surgery down the road.

He also has inguinal hernias on both sides now, and will need surgical repair for that. The dr said they will generally wait until the baby is a bit bigger and older to perform that repair.

Here's hoping he holds strong and pulls through it all and grows up to be a big strong boy!

Please keep in your prayers.

More pics

2008-02-13T21:38:00.001-06:00

Ian is 5lb 15oz today! He's now getting to try a bottle 4 times a day. I fed him his 3pm bottle, but he puked it up all over me lol. Man did we both stink! lol

Attention Mommies!

2008-02-11T23:13:00.000-06:00

Due to a recent change in the forum that friends and i were using, we were all banned unexpectedly! Due to this, there has been a new forum created so that we may all continue our chats, friendships, and support of each other. If you are in a high risk pregnancy and would like to talk to others who have been thru this or if you are a mother who would like a place to chat with other moms, seek/give advice, seek/give support or just hang out, come visit us at www.postpartum.proboards46.com . We are a group of "graduated bedresters" who wish to remain in contact after our pregnancies have come to an end. See you there!

Bottle baby!

2008-02-11T23:09:00.000-06:00

Ian is now getting Bottle feeds twice a day. He's getting 15cc at a time (as much as he'll drink of the 15cc that is). He's doing great with no oral aversion, no choking, good suck/swallow reflex. He's 5lb 11oz now!!! He is now jaundice all the time, with a yellow hue to his skin, and a yellowish green hue to the whites of his eyes. This is due to TPN he is on for nutrition. It interferes with liver function and basically causes damage to the liver. Hopefully his next surgery will turn out well and he'll be getting feeds and off tpn after that. I hold him all the time anymore, it's great!

He's such a chubster anymore! lol

2008-02-08T18:21:00.003-06:00

I swear he has the chubbiest cheeks ever! lol

What a wonderful week!

2008-02-08T00:58:00.001-06:00

It's been such a great week with Ian making so many quick improvements just since Monday, so i just wanted to share some good news Since Monday he has:

1. Came off the ventilator and is breathing on his own with NC (vapotherm)

2. CRIED...biggie for me to hear him (Cuz of the vent is out of course)

3. He's wearing clothes!!

4. He's out of the warmer and into a bassinet as of today because he's holding his own body temperature!

5. I can now get him out of his crib by myself and hold him whenever i wish, for as long as i like! I was only able to hold him for one hour once a day before now.

6. He's getting small feeds of pedialyte and tolerating them well so far.

His wounds are still healing and concern me alot tonight because you can now see the sutures in the wound beds that were used to close the tissue INSIDE his body! Looks very strange but i have them contacting the dr and surgeon first thing in the morning.

YEAH For all the improvements! I'm so excited and happy!

Isn't God amazing!

All dressed up

2008-02-06T16:59:00.001-06:00

I dressed Ian in his first "real" outfit today, wrapped him in his own blanket and got him outta bed by myself :). He looks soooo good today! Such a sweetheart! 5lb 6oz.

Vid of Ian's first audible cries

2008-02-04T19:00:00.000-06:00

The lighting for the vid was very poor but if you listen closely, you can hear his little weak cries. It's so sweet to hear after 2 months of no sounds. Just wanted to share :)

He's OFF THE VENT!!!!!

2008-02-04T17:08:00.000-06:00

Ian is off the ventilator!!!!! This is such a hugeeee step for him! He's on a nasal canula at 5L (Vapotherm) and doing well so far. His little cries are weak (from the vent between his vocal cords for so long) but soooooo cute. He is sucking a pacifier like crazy too! He's now 5lb 4oz as of last night and he's getting lots of baby fat, and has a double chin to boot! LOL.

Sunday Night

2008-02-04T01:03:00.001-06:00

Ian is down to 7 breaths per minute on his ventilator now!!! They said they expect him to be off the vent tonight or in the morning. If he extubates himself tonight (they said he keeps pulling on the tube), they will leave it out and try a nasal canula with oxygen. If he doesn't pull it out tonight, they may extubate him tomorrow. We'll see how he does! Hopefully he'll do well and not need the ventilator back. He's on very light feeds of pedialyte now to see how he'll handle them and they will gradually increase them. He's 5lb 4oz tonight! He's a growing boy! Awwwe, i love him so much! :)

Still on the up and up! :)

2008-02-03T15:11:00.000-06:00

When we went to see Ian last night, we found out he is now down to 10 breaths a minute on the ventilator. This means the machine is breathing 10 x's a minute for him and he is doing the rest (normal for a lil guy is 40-70). They have also ordered that if he accidently becomes extubated, then they are going to leave the ventilator out and put a nasal cannula on him at 2-3L of oxygen and see how he does. There is always the chance he'll need reintubated, but it all depends on how he does. They have also decided to start some small feeds (non-formula) on him today to see how he tolerates them. We had been told he couldn't have feeds until after the next surgery, but this will not be tried through the fistula which involves the majority of his intestines. Dr. R says that they will probably do a GI study 6-8wks from his date of surgery (like a barium study) to see what they can tell from that. He's been really fussy lately and i was wondering if maybe it's because he's feeling hunger and asked a couple of the nurses, so maybe that's why they are attempting the feeds now too. I also asked if they could start swaddling him instead of laying bare in the warmer, because he stays much calmer when he is "contained" (wrapped all snug). So this lil guy is soooo strong and fighting through so much. I'm so proud of my teeny lil guy. Oh well and maybe he's not so teeny anymore. He weighed 5lb 2oz as of last night!!! :) GOOOOO IAN!!!!!

February 1st

2008-02-02T00:51:00.000-06:00

Here's my growing boy. Isn't he getting big? He's 4lb 14oz now (2278grams). He likes to be all snuggled up cuz he's such a big boy! :)

What a long day

2008-01-29T23:10:00.001-06:00

I got up early and went to Children's hospital today because Ian was supposed to be transferred this morning. The mediflight team must have had a busy day because they didn't show up until almost 6:30pm to take him back to his old nicu. He's back "home" and the nurses were all smiles, saying "good to see you back". He was sooooooooooo fussy it was insane. He just kept getting mad and screaming and throwin his arms around, raisin his body off the bed. They increased his pain med back to what it was at the other hospital to see if that would help.

This morning (at children's), i arrived and he was mad and screaming and i could actually hear noises from his screams and asked hte nurse if his tube was still in place because he shouldn't be making noises. She said it was fine, then he started gagging occasionally, then his color turned grayish and his oxygen levels began falling into the 50's... the ditzy nurse finally paid some attention and after another nurse walked in, she said "maybe he's extubated" and a whole crew came in and reintubated him. While they were getting the stuff together to reintubate him, the NP was bagging him and when she'd lift it off, he was screaming and crying and i actually finally got to hear him cry. Sad to say it was nice to hear (not under such circumstances, but still nice).

So all in all, he's back "home" to his old nicu and hopefully will settle in nicely. The mediflight team gave him a cute certificate saying he's a "flight partner" (even though he actually went by ground in an ambulance with the mediflight staff on board) lol.

Transferring back to the old hospital :)

2008-01-28T21:40:00.000-06:00

After ALOTTTT of thinking and praying and weighing the odds, we have decided to have Ian transferred back to his "home" nicu now that he is doing so well. He will remain there until his next surgery at which time he will come back to Children's Hospital. The Dr's and NP's have assured us that he is safe for transfer and safe to be cared for at the home nicu and if anything were to happen emergency wise, he'd just be immediately transferred back to Children's with no problems. Everything seems to be going good for now. His wounds from the incision dehiscing are smaller today and he's off of 3 of the antibiotics, pain med is cut in half, and his vent settings are much lower (same as posted yesterday). He is 4lb 11oz, such a big cuddly boy :) Held him again today for 2 hours. The nurse gave us a few outfits he can wear there that are like little t-shirts that open down the front for easy access to his abdomen and iv's and stuff. So our little guy will be taking his second ambulance ride tomorrow. I hope we are making the right decision, but i do feel much more at ease about it now than last week so i think we are.

The Most Amazing Feeling

2008-01-27T23:09:00.000-06:00

I've been aching to pick Ian up and cradle him in the crook of my arm so much lately because he's getting so big. Tonight, i got my wish. The nurse said "are you ready to hold him?" and i said "i've been ready forever". She then snuggled him up and put him in my arms! Not kangaroo care, a regular hold which was awesome cuz i could see his face. It was truly amazing. His warmer has been turned off since 7am this morning and he has maintained his temperature while snuggled in a blanket which is a big improvement for him. They have also decreased his ventilator settings over the weekend, the peep (pressure in the lungs on expiration) from 8 to 6 and the total assisted breaths from 42 to 20 which means he's doing alot more of the breaths on his own. My strong little guy. I never thought i'd be holding my own lil one like that. He's like looking down at a newborn since he's now 4lb 1oz :). My little man is just not so little anymore. Ohhhh and he had an outfit on for the very first time tonight.

Such a doll!

2008-01-22T22:09:00.000-06:00

Ian was looking around today and it was just too cute! Here are a couple of pics and there is a video below this blog.

Tooooooo Cute!

2008-01-22T18:37:00.000-06:00

He's not red like in this video. The video was taken without extra lights on because his eyes had just been dilated for the opthalmologist to see him.

Frustrated!

2008-01-22T00:13:00.000-06:00

Went to see Ian tonight and so i decided to look at his incision and make sure it was still doing well. He now has 2 areas where the incision has opened and left big open wounds with drainage. What treatments are they doing? NONE! The nurse said the surgeon came and checked him today and said everything looked good. He wrote "nice viable pink stomas, some edema, no concerns". NOTHING about 2 open wounds. They even covered one with the ostomy wafer and it looks aweful! I had a NP come in and look and she just blew me off saying "well there's nothing else we could do anyway, he's already on antibiotics. Maybe they could get a wound consult or something".... MAYBE????? Why do these people not address anything until i raise hell about it???? This poor lil guy just can't catch a break! I feel so bad for him, it's just one thing after another and he still has so much more to go through. It's just not fair for him. I'm headed to bed so i can get up early and go try to straighten things out tomorrow.

Monday, January 21st, 2008

2008-01-21T10:11:00.000-06:00

Not a whole lot to update today. I'm thinking maybe that's a good thing :)

Ian remains on the conventional ventilator and they've reduced his settings some the past couple of days. His blood pressure continues to hold steady without medications for it. He does have a small grade 1 brain bleed between the hemispheres. They say it's very minor and should cause no problems. It's most likely related to the Nitric Oxide that was used last weekend. But, without the Nitric, he probably wouldn't be here and so the minor bleed was well worth keeping him here. He still has swelling but it is way way decreased from what it was. The nurse this morning said "he's 3 times smaller than he was a few days ago when i took care of him". I thought by the looks of him, he'd weigh less today but he still weighs 4lb 14oz. I wonder what he'll look like and weigh when allllll the swelling is gone. His incision is healing well and his ostomy is putting out small amounts (not much at all) but that's normal because he's not getting any feeds...just tpn/lipids. He was opening his eyes and smiling at his daddy last night.

Ian's looking better!

2008-01-19T22:04:00.000-06:00

Ian is starting to look so much better. He's down to 4lb 14oz today. He still has swelling, but it's continually diminishing. Tonight they changed his ventilator setting to a diff rhythm. He was overbreathing the machine and so with this new setting, he can do much more of it at his own pace. He's still holding his own and doing well. He's on Fentanyl for pain, Synthroid for hypothyroidism, TPN & Lipids for nutrition, Occasional Potassium for hypokalemia, 3 antibiotics, and other routine iv fluids.

He had some poop from his jejunostomy today and drainage from his mucosal fistula, as well as a poopy diaper. These are great things... Maybe everything is going to start clearing out so his lil intestines can begin to heal and move the blockages on through.

He was in a bad mood part of the day yesterday and kept throwing a tantrum. At first it was because he needed suctioned. Then he kept getting mad, so i put my hand on his feet and his head and hummed a song to him and he calmed down. UNTILLLLL the u/s tech came in to do the head ultrasound and he was NOT happy about that lol. I'll add a cute pic of him mad and screaming lol. Can't wait to hear the screams out loud :)

Friday, January 18th, 2008

2008-01-19T22:00:00.000-06:00

BACK ON THE CONVENTIONAL VENTILATOR!!!

Ian was put back onto the conventional ventilator today. He was breathing over the oscillator and not allowing it to do it's proper "duty". He's already trying to show up the machines! lol. They figure he'll do much better on the reg vent. His blood pressure is still doing good. The nurses are finally wearing gloves and gowns and being more careful. We've had some good nurses the past couple of days, so that's great. They did an ultrasound today of his head. He has a small brain bleed now. We are waiting on the dr's results to find out more about it. He never had a brain bleed prior to now on u/s's and it generally shows up in the first week after birth. But, one effect from Nitric Oxide is that it can cause brain bleeds. But, without using the Nitric Oxide, he wouldn't be with us today. So, we'll take the lil setbacks and deal with them as they come :)

Thursday, January 17th, 2008

2008-01-17T16:13:00.000-06:00

UGHHHHHH! This hospital frustrates me! I went back up to the hospital to see Ian last night before i went to bed. His oscillator settings were almost doubled, his Pain meds were increased, his blood pressure was sky high and he had an arterial line in. I had only been gone a few hours! They never called me to say he was declining, never asked to place an arterial line, nothing! I asked the nurse what was new, and she said nothing, he was fine. So, i asked for a Dr. or NP. The NP informed me that the alveoli in his left lung had collapsed and they had to increase the setting to open them back up. The nurse kept saying that his blood pressure was only high due to her messing with him... but i was there for hours and it stayed high the whole time. The nurse also never put gloves on to mess with him again. When she went to lunch, i asked for the charge nurse, but the other nurse wouldn't get her for me and said she'd take care of it herself. Whatever! I was afraid to leave because the nurse working with him seemed to blow everything off and was too busy chit chatting with others who wandered into his room. They also wouldn't turn him off of his right side due to "leaving his left side up will open that lung"... so this morning, the left lung is better and now the right lung's aveoli are collapsed. His blood pressure is still on the high side of normal but nothing like it was early this am. I came home to sleep a few hours but kept waking up and just couldn't really get alot of sleep so i went back to the hospital. I will have to admit, he had a good nurse today, she was sweet and took good care of him. I did ask for the Director of Nursing today and spoke with her about my concerns with the other nurse from last night and requested she not work with Ian anymore. The DON said she cannot guarantee that. Whatever! I stressed to her that my main concern was that most of the staff including the dr's and surgeons weren't wearing gloves when touching Ian and he has been critically ill, has infections already, and has an incision with 2 new open stomas. I had placed a sign on his bed (colorful with stickers to not look so pissy) that said "Please don't make me sick, WEAR GLOVES". It was a gentle way to get my point across. Today, the sign is magically gone off of his bed and nowhere to be found. These people are really pissing me off. They are so stupid with the way they care for critically ill babies. I'm tired of repeating myself to them. From now on, when they reach in to care for my son without gloves, i will snap a photo, ask their name, stop them, and point them to the gloves. Maybe physical evidence of their lack of concern will scare them into wearing gloves and being careful with my baby. This stupid OU hospital is for the birds! I swear, when he is better enough to wear clothes, i'm buying tons of Orange and black OSU preemie clothes to keep him in until he's out of soonerville hospital LOL. (I'm not a sports fan, i could care less... It's just to make a point LOL).

So, as of now, his blood gasses are better and b/p is better and he's in the hands of a good nurse named Marsha, so I came home to relax for awhile and go back up later this evening.

Oh and on the upside!! He is much less swollen this afternoon than he was at 4am when i left. YEAH!

Wenesday, January 16th, 2008

2008-01-16T17:29:00.001-06:00

Ian remains very swollen today at a whopping 5lb 2oz. His blood pressure was running lower than it should be today and his urine output had decreased alot so they put him back on the dopamine which will increase his blood pressure and also increase kidney function. His blood gasses fell out of normal today and so the ventilator settings now had to be increased a bit. Overall, he's still stable and still moving around. He's so swollen still that he is a lil chunk and he looks so sturdy i just wanna pick him up and cradle him in my arms. I can't wait for them to get the swelling off and get him better so he can feel better and go "home" to our regular nicu. Here's a pic of him from today....This is after getting about 1 1/2 pounds of fluid off him (they had gotten over 2pounds off but he gained back 1/2 pound overnight.

Ian's surgery

2008-01-15T23:18:00.000-06:00

On Friday, Ian was transferred to another hospital for surgery to his abdomen due to the NEC (necrotizing enterocolitis) getting worse. He had surgery that night. the surgery results were bad. When they got in there, they found that all of his intestines had been fused together by the infection into one large mass. Every time the surgeon tried to separate them, they fell apart (he said they were like wet tissue paper). He found almost 1ft of intestine at the base of the stomach that he routed to the abdominal wall (jejunostomy) and routed the other end portion to the abd wall as well (mucosal fistula). Then, he closed him up. Now we have to wait and see if his body will heal teh intestines and strengthen them so that in about 2 months, they can try surgery again to separate them. Until then, he'll not be able to be fed anything. If they are able to fix his intestines in 2 months, they will do so. If the damage is so severe, that it cannot be separated, then the only option would be a bowel/liver transplant. The surgeon says this is new and not quite perfected yet, so we'll pray his lil intestines heal well and are able to be fixed. It's so scarey to not know what may come ahead.

During the night after the surgery he was was having low blood pressures and his blood gasses were coming back bad and they had him at very high settins on the oscillator (a type of ventilator). I stayed until 4am saturday morning with him, then came home to catch a couple hours of sleep. (This nicu will not allow you to fall asleep in a chair at the bedside, or stay anywhere in the hospital). I got home and went to bed, then received a phone call around 9am from Ian's doctor. He said "we've been working on ian for quite some time now trying to get his oxygen levels up and his blood gasses up, and his blood pressure will not come up either. We have him on 2 meds to increase his blood pressure and are giving fluids but it's not coming up. I am going to give an albuterol treatement to see if that will help open up his lungs but i don't think it's going to help and i do not forsee a good outcome. I don't think he will make it much longer". I jumped out of bed and we raced to the hospital. I called the neonatologist on the way there and asked "can't you try nitric oxide" to which he replied "i guess maybe we could try some". We go to the hospital and ian was in very poor shape. They started the INO (nitric oxide) and slowly his oxygen levels began to rise. Over the course of the day it was a struggle to keep them up and to get his blood pressures up. The dr's then put him on an epi drip to help with his blood pressure and it immediately made an improvement. The blood gasses remained poor but he was still alive!!! I stayed around the clock and fell asleep in the chair for a couple of hours (which is against the rules, but that nurse didn't kick me out *smile*). They say he was in shock from the surgery.

Sunday his blood gasses began to improve, his blood pressure remained stable with the 3 meds.

Monday: They weaned the Nitric oxide completely off! His blood gasses were beautifully normal! His blood pressure stayed perfect and they even stopped 2 of the 3 b/p meds. He's stabilizing out!!!

Tuesday: He remains stable!!! He's now off of all b/p meds and holding his own! His blood gasses are staying perfect and they are weaning down his oxygen and his oscillator settings. He's also now off of the paralytics (to keep him paralized while he stabilizes). Today he is moving his lil arms and legs around a bit and he even opened his eyes and looked around occasionally. (as much as he could because he's still very swollen). They have gotten a lil over 2lbs of fluid off of him in 2 days now!! He's was swollen huge and he's still very swollen but nothing like he was saturday and sunday. They took the catheter out tonight and he's still urinating well so far. Here's praying our lil man keeps on getting better!

Please continue to pray for Ian to heal and get better! I appreciate all of you already praying for him. Thank you for everything!

January 8th, 2007

2008-01-08T18:08:00.001-06:00

Ian continues to have MRSA in his lungs. He remains on the oscillator and his oxygen levels fluctuate due to pressure from fluid (edema) as well as his distended abdomen.

He has NEC (necrotizing enterocolitis) which means he has an infection/inflammation of his intestines. This is closely monitored because it can lead to a perforation or rupture of the intestines, or cause a portion of the intestines to die calling for surgery to remove that portion. The NEC is causing multiple other problems at this time: His blood count keeps dropping so he is getting transfusions. He is retaining alot of fluid and has gained alot of weight due to that. He is 4lb 2oz today as compared to 2lb 8oz a week ago. He is currently getting synthroid to assist his thyroid because due to his prematurity his thyroid isn't functioning as effectively as it should. (Transient Hypothyroidism of Prematurity).