My 3 Boys

Aside from a scare this afternoon, today was a pretty good day. Come to find out, the NICU DID lift the restrictions on visitation...some of the nurses just didn't know. SO, our nurse let the boys come in to meet Liam, tonight! The doctor had to give permission for Xander because he's under 3, but he gave it so the both got to meet him! The other big news is that Liam has graduated to a big boy bed (an open crib)!!! Oh, and as of last night, our little man is only 3 ounces away from the 5 pound mark! He still isn't showing enough cues that he's ready to bottle-feed, so they're now waiting til Monday for that evaluation.

More Improvements!

Today, they removed the OG tube and put an NG tube (really the difference is that the OG tube goes down his throat and the NG tube goes down his nose) and changed his feedings to run over 30 minutes and we can see his face, now! Tonight, Jenny (NNP) also put him on the Occupational Therapist's list of babies to start seeing to evaluate to see if they can start oral feedings! YAY! Liam is still only on a minimal amount of low flow oxygen! He is up to 4 pounds, 12 ounces (gained 5 since Monday night)!

Liam Must've Taken a Sneak Peek at My Post Yesterday...

So, after being worried about the lack of progress over the last couple weeks, I called the NICU this afternoon to find out Liam had been taken off the High Flow Nasal Cannula and put on a Low Flow Cannula (plain old oxygen like you and I would be given if we went to the hospital). He has been doing fantastic on it and they were able to wean him way down on oxygen levels, to boot! He is barely getting anything right now and the next step will be room air!!! Perhaps feedings by mouth will happen soon?!

Slow Progress

MONDAY, APRIL 26, 2010 7:31 PM, CDT

Liam is doing better, overall, but is still continuing to have some major desat/bradycardia events which require his o2 to be turned up. He hasn't come down any on his oxygen needs since being put on the high flow nasal cannula...hoping for some improvement soon but am glad we're not regressing, so far. He did have to have another blood transfusion today. He also had his first eye exam today and was diagnosed with Stage 1 Retinopathy of Prematurity (ROP) which can cause blindness (well, not stage 1, but stage 1 can progress). This means the excess time he spent on the vent and the length of time he's needed oxygen has affected his eyes. He'll now have weekly eye exams to make sure it doesn't get worse. Worst case scenario would be him needing surgery to correct it.

Liam's First Graduation

FRIDAY, APRIL 23, 2010 12:24 AM, CDT

It's been an okay week for Liam. He is on a high flow nasal cannula, still. Because of the switch, he's been a little higher on his O's (oxygen). He's still having multiple "events" every day, but not severe enough to be bagged or anything - an improvement. Yesterday, he graduated from the Giraffe bed to an air-controlled isolette...next step is an open crib. He also got to wear clothes for the first time yesterday. But, due to some "events" today, he didn't wear them today so they could watch his breathing more easily. He's down to one OG tube, again, and it's going into his stomach rather than the intestine. Since pulling the OG tube up to his stomach and starting bolus feedings, he has developed Reflux (as was anticipated by the ENT from his Laryngomalacia, or floppy airway) which was leading to more desats, so he was started on Reglan and Pepcid tonight.

That's about all there is right now. Just feeding and growing and trying to not need so much support breathing.

He is now 4 pounds, 3 ounces and 17 inches long.

April 19, 2010

MONDAY, APRIL 19, 2010 11:31 PM, CDT

Liam has officially broken the 4-pound mark! He should get to start wearing clothes this week...yay! They also took him off CPAP, today. He was only an oxygen hood for 4 hours but started struggling to breathe, so he has "old man" oxygen right now - the regular cannula and appears to be tolerating it well. He had more bowel loops today so they did an x-ray, which looked good, so they're thinking a combination of the CPAP and too much poop are to blame, so they took him off the CPAP and he's also getting glycerine suppositories every 8 hours!

April 18, 2010

SUNDAY, APRIL 18, 2010 12:54 AM, CDT

As of 9:00 PM, the bowel loops had resolved themselves! Also, my "little" chunker is only ONE ounce shy of the 4-pound mark!

SUNDAY, APRIL 18, 2010 10:59 PM, CDT

Today was an okay day, I suppose. They moved Liam from nasal prong ventilation to CPAP. I did get to hold him, today, but only for an hour and a half because he wasn't tolerating it very well - he kept having bradycardias (heart beating too slow), though his sats were good. The bradycardias are a new thing for him. The good news is that, most of the time, he manages to keep his o2 sats up when he bradys. He also developed more big bowel loops today, but after another glycerine suppository and 4 diapers worth of poop in a 10 minute period, they were much smaller, so they're still continuing feeds at this point and the nurse is going to speak to the doctor about putting him on glycerine every 8 hours, rather than waiting til he has hasn't pooped to see if that helps ward off the bowel loops. Because of the bowel loops, I almost didn't get to hold him but because they looked better after the glycerine, they went ahead and let me cuddle with him for awhile.

April 17, 2010

SATURDAY, APRIL 17, 2010 7:02 PM, CDT

Liam had a good day yesterday then had a major desat last night and narrowly missed being bagged. Today, he's been a little cranky with a few desats, but overall a decent day. The major issue today is that he developed big bowel loops which put him at a higher risk of NEC (something all preemies are at risk for to begin with) - which is where the bowel dies and they have to do surgery. That was at 3:00...he hadn't pooped and had just thrown a hissy fit, so they're thinking that's what it was, so they gave him a glycerin suppository and watched him and said they'd stop feedings if it wasn't better by 6:00 PM. At 6:00 PM, they were still there, but looked MUCH better, so they're just going to keep a really close eye on him and if they don't go away, they'll stop feedings by mouth and put an IV in for fluids....keeping my fingers crossed there.

I did get to hold him for the first time in 6 days, today!!! We cuddled for 2.5 hours again! :)

April 15, 2010

THURSDAY, APRIL 15, 2010 10:46 PM, CDT

Liam was more stable today. Dr. Allphin did confirm the floppy airway diagnosis - but said he should grow out of it. The neonatologist suspects this may be what's causing the desats which have required him to be bagged. He also recommended Liam be put on Reglan to help prevent Reflux...which can, in turn, aggravate the breathing issues. At least we're familiar with reflux, since we've BTDT with Avery and Xander. Other than that, no changes, other than more stability. He weighed exactly the same today as yesterday, too...didn't even gain one gram!

A Month Old, Already

WEDNESDAY, APRIL 14, 2010 10:08 PM, CDT

This morning got off to a rough start. Liam almost had to be bagged again - his sats were in the 60's and wouldn't go over 75...BUT, we've discovered he likes to push the limits. Just as they were ready to bag him and order him back on the vent, he changed his tune and started sat-ing good and finally, this afternoon, was more stable. Dr. Allphin will come see him in the morning to confirm the diagnosis of a floppy airway. Liam is up to 3 pounds, 12 ounces, though...which means he now weighs more than a pound more than he did at birth...eating has not been an issue for him, thankfully...I may not need those preemie clothes by the time he's able to wear clothes, afterall!

April 13, 2010

TUESDAY, APRIL 13, 2010 7:51 PM, CDT

Liam had a much more stable day, today, and has not had to be re-intubated so far! I haven't seen him, though, thanks to a stomach bug I caught.

Rough Day

MONDAY, APRIL 12, 2010 7:08 PM, CDT

Liam had a rough day, and to make it worse, I wasn't here to be with him through it. He started working really hard to breathe this morning so they restarted him on CPAP. This afternoon, he wasn't improving much, so they moved him from CPAP back to Nasal Prong Ventilation - I probably don't need to add that that's one step away from the ventilator. Anyway, because of the Nasal Prong Ventilation and CPAP, they had to put his Trans-Pyloric tube back in and go back to continuous feeds, rather than bolus ones. Anyway, his blood gas looked better this evening.

MONDAY, APRIL 12, 2010 11:00 PM, CDT

The night didn't get much better. Liam dropped his o2 sats down in the 40's-50's while I was in there and they had to bag him for several minutes, again, to get them back up. The nasal prong ventilation settings are almost as high as they can go and if he has another "event" tonight, they'll re-intubate - praying that doesn't happen. Jenny (the Neonatal Nurse Practitioner) is going to talk to Dr. Slack about having Dr. Allphin (the Ear, Nose, Throat Specialist) look at Liam to make sure he doesn't have a floppy airway which could be causing the breathing issues. She also said she thinks it's that in combination with some chronic lung disease going on that's causing these "events." Hoping tomorrow's a better day!

April 11, 2010

SUNDAY, APRIL 11, 2010 9:31 PM, CDT

Liam is still doing well. Shane got to hold him for the first time today. They took his trans-pyloric tube out today so he only has an OG tube that goes to his stomach, now...he's a ONE TUBE baby, now, which he'll probably have until close to time for him to come home - or at least until he's taking all his feeds through a bottle. They also stopped giving him continuous feeds today, too. Now, he gets bolus feeds every 3 hours, which he's tolerating well. He's up to 3 pounds, 7 ounces!

April 10, 2010

SATURDAY, APRIL 10, 2010 8:23 PM, CDT

Liam is still doing well without a nasal cannula or CPAP! He gets a little cranky when we get in to change his diaper and do vitals, but recovers well. I never would've imagined 48 hours ago he would be 1. Off CPAP or ventilation and 2. Be doing so well off those two things! Whoever described the NICU experience as a roller coaster ride wasn't lying!

Improvement!

FRIDAY, APRIL 9, 2010 9:23 AM, CDT

Liam had a break-through seizure so they've raised his dose of phenobarbital.

FRIDAY, APRIL 9, 2010 12:35 PM, CDT

Well I got quite a surprise when I got to the hospital (especially since I talked to the nurse before I left the house)...they got in to do Liam's CPT and breathing treatment and discovered his nasal prongs were around his chin. The nurse didn't even know because he was sat-ing 98. So, they're trying him without any CPAP or ventilation! His bed is on 29% oxygen but he has no cannula or anything and he appears to be doing well. This leads them to believe the two "incidents" yesterday were, indeed, seizures.

So, I got to see him for the very first time without a bunch of tape on his face or something in his nose/mouth (except the OG tubes) and he looks EXACTLY like Shane as a baby except with much more hair...

Two Steps Forward, One Step Back

THURSDAY, APRIL 8, 2010 2:26 PM, CDT

Two steps forward, one step back. I'm now convinced I'm not allowed to get any extra sleep. Every time I sleep in then come to the hospital, something happens.

Liam has had two really good days since coming off the ventilator. And I got to hold him again yesterday for another 2.5 hours. But, this morning, he dropped his o2 sats and heartrate too low - low enough they had to bag him. So, they turned up the settings on the CPAP machine from 4 to 6. He did really good until 11:00 (right after I got here) when he had his CPT - he again dropped his o2 sats and his heartrate, this time lower than this morning. I was in here for the whole episode. His o2 was in the teens and twenties and he was a purple-y blue grey color and struggling. This time they bagged him for several minutes before his sats came back up. The head neo came in and spoke with us and they took him off the CPAP and put him on Nasal-Prong Ventilation. This is where he is on a ventilator but it goes through prongs in his nose, rather than a breathing tube down his throat. If he has any more "episodes," they'll re-intubate him and put him back on the regular ventilator. So, Shane and I are sitting here with him, hoping to avoid the ventilator. He is also now getting aerosol breathing treatments - one to reduce the inflammation and wheezing in his lungs and the other to reduce the swelling in his throat.

Now, how on Earth am I supposed to go back to work on Monday?

April 6, 2010

TUESDAY, APRIL 6, 2010 7:27 PM, CDT

Liam is doing well on CPAP, still. And today, after 23 days of life here on earth, I got to hold him for the very first time! I did cuddle care (aka kangaroo care) with him for 2 1/2 hours! He did really well and his oxygen was turned down lower than it's been since being put on CPAP.

April 5, 2010

MONDAY, APRIL 5, 2010 3:02 PM, CDT

Liam is off the vent! He is now on CPAP and seems to be tolerating it well. They're taking his PICC line out after this round of antibiotics finishes infusing. As long as his blood gas at 5:00 PM is good, they'll take the UAC line out of his belly button tonight... then I can hold him tomorrow (they said they like to wait 6 hours before holding after the UAC comes out). Oh, and I got to hear him cry today! Yes, I know this is normally not a good thing, but it was music to my ears to hear his soft little cry!

April 4, 2010

SUNDAY, APRIL 4, 2010 2:42 PM, CDT

Sorry for no update yesterday.

Yesterday and today (so far) have been quiet days for Liam. They're slowly weaning down the ventilator settings right now rather than pulling the vent to see if he'll sink or swim.

He is 3 weeks old today! I'm still anxiously waiting to be able to hold him for the first time. The UAC line should come out in the next couple days and as long as he's stable enough, I MIGHT be able to hold him - it can't come soon enough, though, because 21 days without holding your child seems like a lifetime!

April 2, 2010

FRIDAY, APRIL 2, 2010 10:56 PM, CDT

Aside from being a "touch-me-not" today, Liam had a pretty good day. His o2 sats were good all day unless someone touched him - then they'd drop big time, so they had to sedate him a few times today. They are turning off all his fluids at midnight tonight and he'll be getting his nourishment from milk.

April Fool's Day

THURSDAY, APRIL 1, 2010 6:30 PM, CDT

Today was a MUCH better day for us...Liam is feeling so much better...so good that he pulled his ET Tube out and they had to put a new one in! Anyway, we got the results of his head ultrasound from yesterday. He had a Grade 1 Brain Bleed that showed up on an earlier ultrasound and this ultrasound showed it has improved slightly. Grade 1 is the smallest brain bleed - the nurse said it's like a bruise on the brain. The doctor did say this is NOT what's causing his seizures, especially if it's improved.