A Work in Progress

I've spent some time this evening updating Liam's Montage. I'm pretty sure it's already longer than Avery and Xander's 1st years combined!

Photo and video editing at www.OneTrueMedia.com

Liam's Birth Story - In Honor of Prematurity Awareness Day

Birth Stats:

Liam Rhyse
Date of Birth: 3/14/2010 at 4:12 PM
Original Due Date: 6/4/2010
Weeks pregnant: 28w2d

Weight: 2 pounds, 10 ounces
Height: 14 inches long
Head Circumference: 10 inches

Birth story:

I woke up on 3/13/10 with a dull, throbbing headache. We had lunch with my in-laws then went home where I slept most of the afternoon except to get up to take Tylenol. When I woke up, my headache was still there and my vision was blurry. Since I have a history of pre-eclamsia and have already had high bp with this pregnancy, I finally decided around 7:30 PM to have hubby take me to L&D, fully thinking they'd tell me everything was okay and send me home. When I got to L&D, my bp was 142/92 and then went up to 142/104 and I had 2+ protein in my urine. My OB out of town, so they contacted the hospital's on-call OB who admitted me for observation for 24 hours and to do a 24-hour urine collection. They also did bloodwork for pre-eclamsia. Overnight, my blood pressure appeared to have stabilized and the labs didn't look terrible so the plan was for me to be discharged after the 24-hour urine collection was finished at 8:40 PM on 3/14/10. Still, though, my headache and blurry vision persisted all night and all day - they gave me caffeine, Tylenol, Stadol, and Percocet to no avail. Anyway, sometime around 2:30 PM, my headache and vision got 10x worse so I pushed the call-light and asked for my nurse...and that's all I remember until I came to with a room full of nurses and a doctor standing over me. Apparently, my BP spiked and I had a seizure.

Everything moved very quickly from there. They drew some more labs (coagulation labs?) and had me sign consents to deliver. I was wheeled into the OR before hubby could even make it to the hospital from our home 30 miles away (hospital has strict no children under 14 rule with the H1N1 stuff so he was at home with our other 2 boys).

Anyway, once in the OR, I was given a spinal block so I could be awake for the surgery, but it went too far up and I couldn't breathe, so they had to put me out under general anesthesia so I could be given a breathing tube so I didn't get to see him. Liam was born at 4:12 PM and they said his Apgars were 5 & 9. Because I had to be on magnesium sulfate, I was confined to bed and unable to even see Liam until he was over 24 hours old.

Shane and a nurse had brought me pictures of Liam to my recovery room so I thought I was prepared for when I finally got to meet him around 9:00 PM on 3/15/10. They took me to the NICU as they transferred me to the Post-Partum Unit. I was wheeled in and scrubbed up then taken to my tiny baby's bedside. The pictures, however, failed to completely prepare me for the sight I saw. In the pictures he looked small, but not THAT small. He was so, SO tiny. I immediately started crying at the sight of him laying there in that giraffe bed, so tiny, so helpless, so...frail. His skin was nearly transparent - to the point I could see the little valves opening and closing on his heart as his body pumped blood through his system. As hard as that little body was working, it still couldn't keep blood throughout his body so his right foot was a grey-ish color - which I learned was called "blanching." They had to put a heat pack on the opposite foot to try to improve the circulation. I was not allowed to touch him, hold him, cuddle him - all the things new moms look forward to with their babies. In fact, holding him would have to wait almost a month as the nurses and neonatologists struggled to stabilize him enough that he could tolerate holdings. I was only allowed to touch him every 3-4 hours during "touch times" which were when they took his vitals.

Today, my little miracle is 8 months and 3 days old. Like most preemies, appropriately-dubbed "roller coaster" ride did not end the day he was discharged from the NICU (which was May 27, 2010). Instead, he has been subsequently re-hospitalized a total of 7 times so far and we've been told to expect many more. The day we were discharged from the NICU, we were told he would only need supplemental oxygen for a maximum of 14 days. Initially, it appeared that would hold true, but as the end of June approached, things started taking a turn for the worse. Now, we've been told not to expect him off the oxygen even by his 1st birthday since he is now on 0.5 to 1.5 liters at a time and has been as high as 2 liters recently. But, we will continue to pray that he kicks the o2 habit before then because we know God is still in the miracle business.

Come what may, our precious Liam will continue to amaze us - of this I have no doubt!


Most recent growth stats:

Actual Age: 8 months
Adjusted Age: 5 months
Weight: 13 pounds, 11 oz.
Height: 26-inches

Decided to take Liam back to the eye specialist b/c his left eye does its own thing...so even though we weren't due to go back until June 2011 (for our 1 year follow-up), I took him in today and his right eye is a lot stronger than his left eye. We now have to patch 2 hours per day for the next 3 months and he'll probably have to have surgery (but they're gonna try to prolong that as long as possible because they don't want to put him under anesthesia with his lung issues).... :'(

On another note, his neurology appointment went well and as long as his EEG comes back normal next week, we'll get to start weaning off the phenobarbital - which will take 50 days to accomplish...

LIAM'S LUNGS SOUND CLEAR!!!!!!! I wanna scream it from the mountain tops! He has a nasty stomach virus and is running a 103-degree fever, so we had to take him in and the doctor listened then said "I have NEVER heard his lungs sound 100% clear." YAY!!!

Why is it that little voice in the back of my head is saying "the bottom will fall out soon." Shut up, voice, I'm enjoying a proud mommy moment, here...lol...

Liam came home this evening. There were no changes in his chest x-ray from yesterday to today but the doctor that was on today said he was ready to go home. He is eating much better and looks better. We'll see what happens...Thanks for all the thoughts and prayers!

Liam's lung isn't opening any more and his chest x-ray from yesterday to today was unchanged. It's open, but not by much. So, they've started IPV treatments every 4 hours and watching him do that ranks right up there with watching him be on a ventilator. IPV stands for Intrapulmonary Percussive Ventilator and it basically forces little bursts of air (mixed with saline and albuterol) into his lungs to try to break loose the mucous and open up his airways. The other treatment they were talking about doing is IPPV - Intermittent Positive Pressure Ventilation and I'm not sure what that entails...not sure I wanna know given how hard the IPV is to watch...he is so strong I could barely hold him when they started the treatment because he was throwing such a fit. I felt terrible...anyway, here's hoping tomorrow's x-ray shows some improvement! They're also trying to figure out why he's had diarrhea for almost 2 weeks so they've sent off some stool samples - the Rotavirus one came back negative but the others won't be back til tomorrow.

Scary Day

If you have any prayers left, please say one for Liam. He just got out of the hospital on Monday evening from being admitted for pneumonia. Last night, his temp started going up again and this afternoon was up to 102.6 at home (rectally), with Motrin on board. So, called the on-call doctor who said to take him to the ER. So, I did, thankfully. When we got to the ER, it was still over 102 so they did another chest x-ray and this one showed part of his right lung is collapsed. So, we're once again in the hospital. The plan is for IV antibiotics and fluids - IV fluids are already going. They NT-suctioned him (down his nose and into his chest) and he did NOT like that but sounds a lot better after it. Tomorrow brings labwork and another chest x-ray. My poor little trooper!
Thanks in advance!

Worst Mommy of the Year Award Goes to....ME...

So, I decided to take the three boys out of state to Dallas (well, Coppell), to visit my aunt. We were at this big indoor play place (Going Bonkers) and I was wearing Liam in a Babyhawk MT front carrier. I went to check on Xander then went back to the table to sit down. As I got close to the table, I tripped and fell forward, slamming Liam's head into the table. So, we spent all afternoon in the ER of Medical City Children's Hospital in Dallas. After we got there, he spiked a temp of 101 and wouldn't eat. But, after some Tylenol, his temp went down and he ate so they discharged him. I'm still worried (of course) b/c they didn't do any x-rays or anything, but they said that neither the location nor his behavior made them suspect anything worse...so we have to watch him and follow up with our pediatrician when we get back to Missouri.

I feel rotten...like the worst parent, ever.

NICU Reunion

So, today, 4 months and 6 days after being discharged from the NICU, we took Liam to his very first NICU Reunion at the hospital he was born in. It was a bittersweet day. It was so nice to see the faces of the nurses, doctors, and even a very special social worker, who helped us through the first 74 days of Liam's life. We didn't get to see Liam's favorite nurse (and our's for that matter), though, but it was still a good time. Children of all ages and sizes and their parents/caregivers gathered together in a small area of the hospital to reminisce, eat, and be happy. I thought to myself, what a neat (and scary) thing - to know that all the children in attendance and MANY, MANY more have been through similar experiences to Liam and started those early days out in the NICU. It was also nice to see a few children and parents who were in there at the same time as Liam doing so well. Take one good look around a NICU or a NICU reunion and THEN tell me you don't believe in God! It is an amazing, altogether miraculous sight!

The bitter part? The bitter part was speaking with the nurses, who expected to hear Liam was doing so much better than when he was there and making strides toward normalcy...and not being able to tell them that. Perhaps I could've fibbed a little and just said "yeah, he's doing great" and left it at that. The truth is that he isn't doing better than he was when he was discharged. Aside from semi-consistent weight-gain, things haven't been heading in a more normal direction - quite the opposite.

I'm reminded every morning and every night what a special little boy I have when I draw up his medications - which now total 7 - and that's just the oral medications - he takes 3 more via the nebulizer, one of which is given 12 times per day. At one point, we were down to 4, total, and no breathing treatments. He's done numerous rounds of oral steroids in the last month and had a couple steroid shots (dexamethasone - remember the one that can cause learning delays...) to try to mature his lungs. He's up to between 1 and 1.5 liters of oxygen - up from 1/32 of a liter. I've left my "job" to be with him and ensure he's getting the best treatment he can get - while I wouldn't change it, it does hit me sometimes.

But, one look into my precious blond haired, blue eyed baby's face and it all becomes a distant nightmare. He has a way of making me forget all the tough times with a big grin and a half-laugh and the "talking" he's doing now. All of which, by the way, he is using right this very minute to try to "talk" Shane out of giving him the rest of his medications. He's also become a master escape artist - escaping from his nasal cannula, that is...that kid can pull off tape/tegaderm/dots like nobody's business! :)

Well, I'm off to snuggle with my little sweetheart before we hit the hay and start all over again tomorrow! A sincere THANK YOU is being sent out to everyone reading this who has taken time to pray for our little miracle in the last almost-7 months!

Bittersweet 6 Month Check-Up

Liam had his 6 month check-up today! Growth-wise, he's gained back the weight he'd lost so he's doing well, there, but his lungs still sound terrible. So, we have to continue the breathing treatments - he gets 3 medications through the nebulizer - Pulmicort 2x/day, Atrovent 2x/day, and Albuterol 6x/day...So, they're also going to double the dose of the Pulmicort to HOPEFULLY keep him from having to do rounds of oral steroids every couple weeks - so far, he's had oral steroids 3 times (5 days each) in the last month and a Dexamethasone (steroid) shot. The good news is he's finally getting adjusted to his high dose of phenobarbital so he's progressing a little on his tone. He was extremely floppy a few weeks ago and has lost all the things he was doing, physically - he no longer rolls or lifts his head while on his belly or puts pressure on his legs...BUT, socially, he's doing great - smiling, putting things in his mouth, starting to act like he's going to laugh, etc. We are watching him really closely because he's showing some signs of torticollis, again, so we have to get that under wraps. The doctor was really leaning toward re-hospitalizing him today when he listened to his lungs, but, in the end, decided to just raise the dose of his pulmicort and wait and see because the hospital doesn't really do anything - they usually start him on steroids and send us on our way...so he and I agree it's not really going to do us any more good to sit in a hospital room than to sit at home...He is also up to 1 Liter on his oxygen...which is a ginormous increase over where we were earlier in the summer, which was 1/32 of a Liter...we are no longer permitted to be trying to wean him, either, at least until his lungs clear out...

On another positive note - [knock on wood] He is BY FAR my most easy going child, yet...with the exception of that period of time every night...but he's so quiet when he cries that he still sounds like a cat meowing sometimes...he is such a sweet baby...who has Xander wrapped around his little pinky...everytime Xander hears him cry, he starts yelling at me "Mommy, be nice to Liam" or "Mommy, help Liam." LOL...he's VERY protective of Liam...When we went to the doctor today, Shane took his lunch break to come watch Avery & Xander since Liam was getting shots and Xander threw a fit because he wanted to stay and "Help Liam."

As of today, my Liam has gone his very first month, in his whole life, without being admitted to the hospital!!!!!!!!!

I just felt the need to share that with the world! It's exciting to us and I knew y'all would understand this quirky milestone!!!

The Roller Coaster Doesn't End at Discharge

Wow, I hadn't realized I haven't updated this page since the day Liam came home. It's crazy how fast time flies. Bringing him home was nerve-wracking to say the least. Most people think monitors give you peace of mind, but they don't. The screeching sound of an apnea monitor in the middle of a silent night is none too relaxing but we made it through. We struggled initially with feedings, as we did in the NICU. Slowly, but surely, the bradys got to be less and less. At our appointment with Dr. Rising (the sleep apnea specialist), on June 14, Liam had had no true apneas, so his apnea monitor was discontinued and he was put on a pulse-oximeter (which measures pulse and the % of oxygen in his blood). Things were going well until June 20. He had multiple cyanotic episodes (cyanotic = turning blue) and desats so we took him to the doctor and learned his iron was low again. On June 21, he was admitted back to the hospital - this time to ICU in Lebanon with a plan to receive a blood transfusion. After discharge, another iron level was done which showed his iron to be slightly higher than the day before so they didn't do a blood transfusion. They did a repeat echocardiogram, looked at his phenobarbital levels, and monitored him. The echo and phenobarb levels were fine. He was discharged on June 22 on Caffeine with the suspicion that he was having apneas.

Again, things were going well. We have been weaning oxygen - but waffling back and forth between oxygen and no oxygen and not going more than a couple days without it. On July 12, Liam had another cyanotic episode. This one was slightly different in that his heartrate was over 220 and he was lethargic. The episode lasted a couple minutes and happened early in the morning. I waited for our pediatrician's office to open up and called them. A message was taken for the nurse who called back a couple hours later to tell me to call the Apnea Clinic. I called the Apnea Clinic but the apnea specialist was out due to knee surgery. The nurse told me the pediatrician needed to see Liam right away and that she'd call the pediatrician and recommended I call. So, I waited until after lunch to call. The ped's nurse had the receptionist tell me she'd talked to the apnea clinic and was waiting to hear from the doctor but she'd call me back in a little while. Well, there was no phone call that day. The next day, I called and again a message was taken for the nurse. The nurse called me around 2:00 PM and said to bring Liam to the lab for some blood work (a caffeine level). I did this immediately. The lab said the results would be in the next day (July 14). I gave the office until after lunch, then I called, and was again told the nurse would call me back. This didn't happen. At 3:00 PM and again at 9:00 PM, Liam had more cyanotic episodes. After the 9:00 PM one, I loaded him in the van and took him to the ER in Springfield where they decided to admit him. He underwent another Echo (b/c the results of the one in June somehow never made it to Dr. Tong, the pediatric cardiologist), more bloodwork, and a chest x-ray. All were negative except that his phenobarbital levels were low. So, his phenobarbital dose was raised, he was put on a Home Apnea Monitor, and we were discharged on July 16.

We met with our new pediatrician on July 22 in Springfield. He is wonderful and is much more comfortable dealing with preemies and is in the same clinic as a very highly recommended pediatrician in Springfield (that one wasn't accepting new patients). Anyway, he has said they (meaning him and the hospital doctors) suspect that Liam's "episodes" are actually seizures. He has had a few more since his hospitalization but we've been told not to get overly excited unless he's not coming out of the seizure. We follow-up with the Pediatric Neurologist later in August.

Things again were going well, until the night of July 28. I was changing Liam's diaper and noticed that he was retracting majorly in the sternum (this basically means that when his chest should be expanding, it's sucking in). I immediately called the after-hours number for our pediatrician and spoke with the on-call pediatrician who told us to take him to the ER. I got to the ER at 9:30 PM with Liam. They did a chest x-ray and watched him. The chest x-ray was clear but he was very clearly still having difficulty breathing so they gave him a breathing treatment of albuterol and did CPT on him. This didn't really help, but the ER doctor decided to discharge us at 3:00 AM and told us to call our pediatrician when his office opened (gee, thanks).

I called the pediatrician when they opened on July 29. They told us to bring Liam in immediately. I was already at work and started freaking out because they were very concerned. I was extremely concerned about leaving work due to a letter I got while I was on leave with Liam stating that no leave beyond July 26 would be granted for me and that if I didn't return to work on July 26, I'd no longer be employed with Children's Division. So, anyway, after speaking to our Circuit Manager (who was the only sup in the office at the time), I decided to go ahead and leave so I could accompany Liam to the pediatrician. I met Shane in Marshfield, picked up Liam (while Shane went to medical supply to get Liam some more oxygen - those canisters don't last long when you're on 1 liter), and went to see Dr. Phillips. At the office, Liam was still having severe sternal retractions and some intercostal retractions. He gave Liam another breathing treatment, which didn't change things, so he sent us to St. John's to be admitted, yet again.

While in the hospital, they did a viral panel (which was negative), a repeat head ultrasound (which showed his brain bleed is still resolving but better than the last u/s), and a blood gas. The blood gas test showed his co2 (carbon dioxide) level is too high. They started Liam on twice daily pulmicort and 4-6 times/daily albuterol aerosol treatments and discharged him to follow up with a pediatric pulmonologist....that brings us to yesterday.

Today, Liam is still having retractions and is on 1/2 liter of oxygen (which is way more than the 1/32 of a liter he's normally on). The hospital intensivist told us to expect that he's going to need to be hospitalized several times over the next 2 years. He said once he turns 2, things should start to turn around but for now we'll be visiting him frequently.

So, remember back to the NICU days when we were told that Liam would need oxygen for 10-14 days, MAX....wrong...we're now 2 months out from discharge and he's actually on MORE oxygen, not less. In addition, we're up to 8 medications he has to take daily, see 4 specialists, and are drowning in DME (Durable Medical Equipment) - which includes a nebulizer, oxygen, pulse-oximeter, a home apnea monitor and we'll be getting an oxygen concentrator installed this week because he's on too much oxygen to keep using the canisters of compressed oxygen.

I keep telling myself this will all pass and one day it'll be nothing but a distant memory. Getting to that day, may not come quickly enough, though!

We picked up Liam's medical records this week, before he was re-hospitalized - all 9,000 pages worth (that's 18 REAMS of paper).

As far as good stuff - Liam is rolling over, laughing, and cooing. He is so cute and just melts our hearts!

A New Chapter Begins

We're home! We left the hospital around 3:30 PM. So far, so good! He is now 7 pounds, 1 ounce and 20 inches long...quite a bit bigger than the 2 pounds, 10 ounces and 14 inches he started out with! We're so excited! For a little bit, it was looking like we would have to stay longer. He started breathing fast and retracting but a chest x-ray didn't show anything except that he's full of poop so they gave him a glycerine, which we're to continue doing and decided to proceed with discharging him!

Almost There

Well, we're all trained up on how to take care of Liam - apnea monitor training, oxygen tank training, medication preparation and administration training, CPR training, formula thickening training...I'm sure I forgot some. We do care by parent the next 2 nights - they usually only make you do it one night but Liam has a few extra needs than most of the patients being discharged so we'll be there 2 nights....then home on Friday! FINALLY!

The Light at the End of the Tunnel

Liam took 4 whole feedings by mouth today. He took about half of the other two and the rest had to be tubed. 4 is impressive when he's only taken a full feed by mouth one other time! We did move his feedings from every 3 hours to every 4 hours. This means he has to take more volume at each feed but they're spaced further apart so he wakes up. We tried this a few weeks ago when he first started PO feedings and it didn't work, but it seems to be working today! He's only needed oxygen during feedings today (and only because it was ordered by the OT - we forgot to put it on until halfway through the last feeding and he did fine so the nurse is going to make a note of it for the OT). Liam will have a minor procedure tomorrow (something many little boys have done within a few days of birth, if you catch the drift) so feedings may not go as well after that happens.

The nurse tonight informed us that they have a projected discharge date of 2 weeks from today, so there's finally a light at the end of the tunnel!!

Liam was taken off oxygen at 4:00 PM on Monday after he finished his blood transfusion. He made it to 4:00 PM yesterday without it with no issues (23 hours longer than he's ever made it). He had his 2 month vaccinations yesterday and started running a fever which caused him to start breathing too fast and dropping his sats so they had to put him back on the oxygen for a few hours last night but he is again off of it. For now, though, he has to have it during feedings - hoping that's something we can wean soon but if it's not, it's not. At 2:00 AM today, he took his entire feeding from the bottle for the 2nd time ever. And, at 8:00 AM, he took another entire feeding by mouth FOR ME! Loving the improvements!

Steps Forward

Liam has been off oxygen since 4:00 PM today! He has (by far) shattered his old record of 1 hour off it, now! He had low red blood cell counts again today, so he got yet another blood transfusion - I've lost count of how many he's had, now, but he is so pink again - not so pale like he was. I think this has helped him feel well enough to not need to cling to the oxygen. He saw the eye doctor - no improvements in the ROP, so they'll continue to monitor it - it hasn't gotten worse, so that's good, and now that he's off oxygen, I'm hoping it'll help. He also got his 2 month vaccinations today! Still waiting on feedings to get out of there!

Feedings

Liam is 6 pounds, 4 ounces, now...the size of a regular newborn. He is up and down with feedings. Yesterday, he did incredible - took a 47 cc bottle at one feeding followed by a 42 cc one at the next feeding. Today, we barely got 10 cc down him all day (except through the tube, of course). He was bradying and dropping sats before we ever even tried to put the bottle in his mouth during 2 feeds, which resulted in us tubing the entire feeds. So, that's where we are.

Sorry no update in awhile - haven't had much time. Things are going well with Liam. He is still clinging to the last little whiff of oxygen they're giving him and has failed several trial runs without it. He is up to 5 pounds, 9 ounces - still no weight gain issues. The only thing standing between us and the door out of the NICU is feedings. He is being excessively slow with this. It is somewhat expected, though...but they're wanting him to have made more progress by now. He absolutely will not wake up to eat. They've checked a head ultrasound, thyroid levels, and phenobarb levels which were all normal. He just sleeps right through feedings. He did take 23 cc for me today (which is a little over half what he should be taking). At one feeding, he was so conked out - we tried tickling his feet, belly, and face, sitting him upright, moving him, changing his diaper, taking his temperature, and wiping his face and head with a cool wet rag - to no avail. He ended up having all but 5 cc gavage fed to him. So, that's where we are! I think we'll be home in the next week or two, provided nothing happens between now and then! Exciting and scary!

Liam's Fragile Beginnings at OneTrueMedia.com

A work in progress...

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New Member to the 5-Pound Club

Our little man hit the 5-pound mark today! He is growing so fast! Today, he also got his first shot at a bottle! He didn't hate it, but didn't know what to do, either. He didn't de-sat or lower his heart rate, but just pooped out after only 2 cc's. So, now we just have to conquer the whole eating thing then we'll be on our way home! Monday will be our 50-day mark in the NICU and it's kind of sad seeing a lot of the babies that came to the NICU at the same time as Liam getting ready to go home...he will get there, though, and is well on his way!

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.

March 31, 2010

WEDNESDAY, MARCH 31, 2010 1:05 PM, CDT

Ok, we finally got Liam's test results back. The lumbar puncture was fine. The EEG was abnormal - confirming he did have a seizure. The good news is he hasn't had any "break-through" seizures since starting the seizure medication. The doctor said when they have seizures this early, they normally grow out of them unless there's some sort of abnormality with the brain which Liam doesn't have - according to the doctor. He is getting another blood transfusion today and they started an IV in his scalp...Anyway, his o2 seems to be a tad bit more stable today and he is coughing up and they're suctioning out all kinds of gunk from his lungs and it's turning more yellow/cream colored - which is an improvement from the brown mucous they were getting. So, that's all we know for now.

Oh, and he's a thumb-sucker! Even with the ET tube, trans-pyloric OG tube, and the other tube in his mouth, today he is still managing to shove his thumb in his mouth!

March 30, 2010

TUESDAY, MARCH 30, 2010 9:53 AM, CDT

Say an extra prayer for us if you can. Liam continues to drop in his o2 sats. The night nurse noticed (what I noticed and mentioned yesterday to the day nurse) that every time his o2 drops, he's got twitchy/jerky movements going on and early this morning, they apparently were very rhythmic making the nurse suspect he was having a seizure. So, they did an EEG this morning and have started him on seizure medication. We should have the results of the EEG back this afternoon or evening. The doctor came in and talked to me when I first got here (I'm in the waiting room right now while the doctors are doing bedside rounds) and told me all this and said they're postponing taking him off the vent, for now.

Oh, and I almost forgot - they're doing a spinal tap on Liam today to make sure he doesn't have meningitis, which can cause seizures

TUESDAY, MARCH 30, 2010 9:31 PM, CDT

We won't be getting any results tonight. It's a little frustrating about not having results of the lumbar puncture (spinal tap) back - but, I guess, like they said, it won't change anything because they're already treating him with strong antibiotics. The EEG is more understandable because we were told it might be this evening or even tomorrow because there's only one Pediatric Neurologist in Springfield - and he has office hours, so he can't read tests (i.e. EEG) until after those hours unless it's an emergency - and, there again, they're already treating him with seizure medications (phenobarbital and Ativan (lorezepam)), so there's no real rush for the results today.

Liam had a really unsettled kind of day, again. He was jumping from one extreme to another with his o2 sats, which resulted in him having his ventilator turned up twice. When I left, he was also on 40% oxygen and the vent settings were up to 30 (# of breaths the machine is taking for him) and 25 (pressure) - a big set back for him.

March 29, 2010

MONDAY, MARCH 29, 2010 9:45 PM, CDT

Today was not as great as the past several days. The good news is that they're planning to take Liam off the vent in the next 24-48 hours. The bad news is he has pneumonia again. They also did an ET tube culture, blood culture, and PICC culture today. Though we don't have final results (or preliminary ones for the blood & PICC cultures), the preliminary results of his tube culture were positive for some kind of antibiotic resistant bacteria, so he is getting 2 different antibiotics right now - vancomycin and gentamicin. I'm hoping the other two cultures come back negative!

He was also very unsettled today. He bounced back and forth between sats that were too high and sats that were too low. The too-highs are good - meaning the amount of oxygen he's getting, or the vent settings, need to be lowered. The too-lows aren't good. He had no middle ground today - when I say he bounced back and forth between the extremes, I mean it. He also required very frequent suctionings today. The nurse did say he seems to finally be settling down when we called a little while ago.

March 28, 2010

SUNDAY, MARCH 28, 2010 5:14 PM, CDT

Today has been another good day for Liam. Dr. Sison has decreased the rate at which the vent breathes for him and started him on caffeine (which helps him remember to breathe) to get him to breathe more on his own. So far, he is doing pretty well with out-breathing the vent. Whereas before they wanted him NOT to breathe for himself, now it's a good thing. He is tolerating the CPT pretty well, too, though he does NOT like it.

The BIG news, though, is that Dr. Sison is saying they're hoping to try him OFF the ventilator sometime in the next couple of days and try him on CPAP (like people with sleep apnea use) which will keep pressure going to his lungs so he doesn't have to work so hard to keep his lungs open.

We still can't hold him, though, right now. The only thing that's stopping us is the UAC line. Once that comes out (again), we can hold him - even if he's still on the vent. I'm also being very cautiously excited about he possibility of coming off the vent, too, because he's being watched VERY closely for pneumonia, right now, because he's having lots of brown-tinged mucous when they suction him....praying he doesn't end up with pneumonia again!

A few other things I forgot earlier:
Liam came off the phototherapy again, today. He also had his first poopy diaper...so hopefully the phototherapy light is gone for good, now that he has a way to get rid of the bilirubin!