Once again...it's been awhile

Wow...where to even begin since it's been almost 2 months since an update. Time is getting away from me these days. Anywho...Liam's g-tube and nissen surgeries were pulled off without a hitch. He was discharged after 24 hours in the hospital. But, that wasn't the end. He developed an ileus (a blockage of sorts - his was caused by a swollen sphincter from the nissen fundoplication) and had to be re-hospitalized less than 48 hours after discharge and put on complete gut rest. He got out after a couple days and life seemed to go well for a few days. He had a follow-up EEG and neurology appointment toward the end of May. The EEG showed no seizure activity but showed moderate background slowing - confirming he is delayed.

Then, the fun set in about a week or so after that. He screamed literally for 3 weeks on end this month - had pneumonia/bronchitis again, more GI issues leading to a formula change, heart rate and oxygen sats all over the place (bradycardias in the 60s and tachycardia less than 24 hours later over 200). So, we had another EEG this week. Again, no seizure activity during the test but there is no improvement from the last one, either. So, now the doctors are saying all the issues I mentioned are being caused by the damage to his brain caused by the infantile spasms/west syndrome.

He has been smiley for 3 days, now, until today...when his switched flipped again and he was once again screaming. His moods are inconsistent and just all over the place. We are also in the process of getting him a wheelchair and some equipment (special seating) for the house. In addition, we had to bite the bullet and get him a disabled parking pass for when we're out and about.

Ok, enough negative. Liam is such an incredible baby. He is so laid back and even though he's experienced a lot of pain and frustration in the last couple months, he is SO smiley when he's in a good mood.

Less than 14 Hours to go...

Well, we're less than 14 hours out from the time we have to be at St. John's tomorrow for Liam's surgery. They will be inserting a g-tube and doing a nissen fundoplication. The nissen is where they take the top part of the stomach and wrap it around the bottom of the esophagus and stitch it there to stop reflux. I'm not looking forward to him being in pain because, from what I've read, these surgeries come with quite a bit of pain. I know, though, it'll be better for him in the long-term...but short-term, it stinks! I know God is watching over him, though, and lots of people are praying for him. Thank you if you're one of those people!

T Minus 48 Hours

So far Mr. Liam is STILL healthy! This is awesome! That means that unless he gets sick before then (and believe me it CAN happen), he will be having his G-tube and Nissen Fundoplication surgeries on Wednesday morning. This is super nerve-wracking for us as it's the biggest surgery one of our kiddos has been through. We've been through ear tube surgery 3 times, and Avery was circumcised at age 2 (which required being put under general anesthesia b/c of age). Still hoping he keeps it together til Wednesday (and after) then has a speedy recovery and is home for his big brother's 5th birthday on Saturday!

G-Tube Surgery Rescheduled

Like the title says, Liam's g-tube surgery has been rescheduled - for May 11, 2011 (Uncle Shawn's birthday). We're crossing our fingers and praying that it actually happens this time. We scheduled it the day before yesterday, in the morning, and by that evening he was wheezing again. So, we called the doctor yesterday and they put him back on antibiotics (which he had JUST finished a 10-day course of on Tuesday) until his surgery. Hoping this works to get the surgery done. He needs to have Occupational and Speech therapies stepped up but it would be useless to do so with the NG tube so we're kinda holding off until we get the G-Tube for him.

Little man is outgrowing his swing/bouncy seat and the jumperoo and still doesn't have enough trunk strength and control to sit in the high chair without being propped up in there so the physical therapist is working to see about getting us a special chair (called a tumbleforms chair) for him to sit in. We're working on sleep options for him, too, since he's sleeping propped up on pillows on the couch with one of us sleeping in the floor next to him. That's about it.

An Overdue Update

Liam stopped the ACTH injections last week! He is such a happy baby again. He's rolling, now. We have some serious work to do on trunk control. He has gotten so used to breathing with his stomach that that's how he breathes most of the time, now. He is learning pat-a-cake and it's his new favorite thing! I've caught him imitating sounds, too! Today, I said "uuuugggh" really loudly and heard him make the same sound...so we did that a few more times until I tried to show Shane...then he wouldn't do it. Liam has a puppy, now, named Daisy. Daddy isn't happy about this but Liam's face lights up when he sees her. Liam now has a private duty nurse that comes twice a week to take care of him while I do my practicum. It took a lot of self-talk and self-convincing to make myself "okay" with accepting help but I'm going to flunk out of grad school if I don't. Her name is Bonnie and she is great!

Happy Birthday, Liam! A Letter from Me to You.

My Dear Sweet Liam,

I know this first year of your life has been so hard for you. You've had to struggle more than any baby should. But, through it all, you have stayed strong and continued to show the world your perfect little smile and those crystal blue eyes. I'm hopeful that as you grow you will not remember the bad things that have happened this year and only remember that you are loved by so many people - family, friends, church member, doctors, nurses, therapists, and even complete strangers but most of all, me. I love you so much, little Liam.

Happy Birthday, my beautiful little man!

Love,

Mommy

Just a Little Update

We had an Upper GI and a Small Bowel Study done today to make sure there's no blockage. He's been having dozens of poops per day but his belly, over the weekend, kept getting bigger and bigger and he was screaming in pain and his o2 sats were everywhere so I took him to the ER where they did an x-ray which showed, of all things, that he was constipated from top to bottom. So, we added Miralax to his cocktail of daily medications - this is something we dealt with with Avery, so we're not new to constipation with diarrhea issues, it just sucks, though.

Yesterday we had a Neuro appt. where I got chewed up one side and down the other for taking him to the ER because of the germs - which I know but he had been screaming in pain for 4 hours and urgent care wasn't open yet (and really, is there any less germs at pediatric urgent care?)...anyway, won't do that again. Then, there was a mix-up with the ACTH dosages. Neuro had changed the doses 2 times and we were going by the wrong dosing information AND in addition to that, the nurses at the hospital did the math wrong and had us giving 0.35 on the syringe rather than 0.3 so we've gone through it quicker than we should've so he chewed me out because of the cost of the medication (how was I supposed to know the nurses did the math wrong?)...

Anyway, so yesterday I contacted the peds office and requested something either stronger or different for Liam's reflux which has grossly worsened since having the NG tube put down. Well, with all the constipation/diarrhea issues and the increased reflux, they decided to do an UGI and Small Bowel Study just to make sure there were no blockages causing it. So, everything looks good! Which is great.

Now we're looking at a G-Tube in the next week or two. The neurologist and pediatrician seem to think it's time to move forward with that. The Neurologist isn't concerned about weight gain (ACTH has helped with that) but with calories for energy because he is too floppy. Neuro says he shouldn't be THIS floppy, even with ACTH....so...that's where we're at.

Milk and cookies to you if you followed my word vomit, there. I just had to get it out!

Just an Update

Sorry, mommy's failing at the whole blog thing...really, it's probably more avoidance than anything...but, here's an overdue update. Liam did have some more seizures before leaving the hospital but they were very mild and he hasn't had any since. The MRI came back ok. It's not normal but what's wrong is caused from the seizures, not causing the seizures. He was released from the hospital after 9 days, total. We were held up by feedings - or lack thereof. One hospital intensivist doesn't release children with NG tubes - either have to be taking all feeds by mouth or move on to something more permanent (G-tube). The other hospital doctor, however, decided it was time for us to go home and knew we could handle the NG tube - good thing because we would STILL be there if it weren't for him.

People keep asking how Liam is. It's a hard question to answer. He's not having seizures - which is the most important thing right now. However, he has lost most of his developmental milestones and has only attempted to smile twice since mid-January. My little man is lost inside himself from these ACTH injections. This is nothing out of the ordinary, but no less easier to deal with. Everyone that knows Liam knows he is generally a very happy, smiley, social baby. Now...not so much. This has been very hard for Shane and I to cope with and I can't wait for the day we get to see him smile again (after the ACTH shots).

Bitter with a a LOT of Sweet (at the end)

Liam's been in the hospital since Thursday. He had 17 seizures/spasms in 4 minutes on Thursday night so they gave him Diastat. The medication is a gel that is VERY expensive ($30,000 per vial) and there is nowhere in this state that carries it so it had to be shipped from Florida and should arrive at our house today (we had to promise there'd be someone there to sign for it) then DH will bring the medicine up here to the hospital so he can start on it. In the meantime, they've stopped the Phenobarb after the seizures the other night and started him on Keppra. The Keppra has wiped him out so he's slept most of the time. In addition, he had a MRI yesterday that he had to be sedated for (they used pentabarb) so the combination of the sedative and the keppra are keeping him pretty sleepy. He only wakes up to eat or cry - I miss my smiley little man - haven't seen a smile in almost 2 weeks, now. He is having a hard time recovering from the pneumonia b/c the medication is knocking him out and he's not coughing it out.

So...alot to deal with. The treatment for these seizures is a very strong steroid which will further suppress his immune system which is VERY scary for us because he's currently on his 12th hospitalization since leaving the NICU in May and making him more susceptible to anything scares the heck outta me. In addition, we'll have to take him to the doctor weekly for blood pressure monitoring because the medicine can cause hypertension - if he does develop hypertension, they'll treat that with medication. Anyway...just praying at the moment and hoping to see my baby boy smile again, soon!

The good news is HIS MRI IS NORMAL!!!!

Now We Know

Just wanted to thank everyone for the thoughts and prayers for Liam. They are truly appreciated. Right now, we're a bit shell-shocked and reeling from all this. I know everyone has a lot of questions, as do we, so I'll try to answer them as we get more information.

As confirmed by the EEG this morning, Liam is having Infantile Spasms. Compared to grand mal seizures, they don't LOOK that bad, however, they are more devastating. Most children with IS have some degree of mental retardation. There is a chance he can outgrow them but a very strong chance that this diagnosis will be replaced with another seizure disorder diagnosis.

What we know right now is that he'll be here for at least the next couple days or so. They have to order the medication and it has to be shipped here - should be here tomorrow. They have to see how he is going to react to the medication and we have to learn to give the shots ourselves before discharge. He will get the shots for at least the next 12 weeks. He needs to have an MRI but they can't do the MRI until he has had antibiotics for 24-hours to treat the pneumonia so they can safely sedate him. And, that is the gist of what we know.

Praying for a better outcome

Ok our Internet is now down so I'm posting from my phone. The nurse on-call called back and our ped. said for us to come into the office tomorrow. Was a little frustrated and debating going on to the E.R. when our Neurologist called us himself from home. He said "I'm sorry to tell you this but I think they're seizures" he then went on to say (and confirm our fear) he thinks they are Infantile Spasms. We have to be at the hospital at 9:00 AM to be worked in for an EEG he said depending on what the EEG shows, we will probably be admitted to the hospital to be started on shots. I can't quit crying because he said these are the worst kind of seizures a baby can have.

It's Been Awhile

We've had quite a month so far. Liam contracted RSV, which landed him in the hospital. He very narrowly missed admission to the PICU (as in they told us they were moving him to the PICU but came back to move him and he was breathing a hair easier so they held off). Since then, he got his ear tubes - which were a success - he can hear so much better, now.

Now, however, there's been a new development. He has started having these clusters of "episodes" which are like spasms. I thought they were stomach cramps, and I got them on video after 3 days, but the pediatrician is sending it to his neurologist. I'm just hoping for some kind of answer because he just cries during them and it breaks my heart and there's nothing I can do to soothe him.

Big News

The journey we embarked on on March 14, 2010 has been nothing less of a roller coaster ride. We've come to expect the unexpected, learned to live life by the day or even hour, and have witnessed miracles firsthand. To say the "Preemie Experience" has changed our lives would be a gross understatement. There have been many ups and many downs along the way. We're now approaching the 10-month mark of our journey and I'm starting to feel like I know why God trusted us to take this extraordinary journey.

The problem is that I've been trying to ignore God; pretend like he isn't revealing his plan. Pure and simple - it's not working. That "little voice" grows stronger each day I try to ignore it and it's now almost screaming at me. Ignoring it has, until recently, made me feel better because it means people won't ask questions, people won't judge, and I can continue with MY plans.

Over the last several months, I have been feeling the calling toward the nursing field. In many ways, it started in the NICU with the many wonderful nurses that we were blessed with. In some ways, it's because I've spent the last several months "nursing" my little man. Yet, in other ways, I realize it may have something to do with some things that have occurred in the latter part of 2010 with my career. Whichever it may be, the fact is that I can't ignore it any more.

Since this all began with my precious baby, I feel it only appropriate for me to let him announce it to the world. So, world, you now know our big secret - the one I've discussed with a select few and the one that has me so nervous. I realize there are going to be those that do not support my decision - and to them I would say that I've kept this a secret for so long due those people. I would also say that I'm the one who has to support my family and make decisions for myself and that I know this is the right one. To those who do support me, I can only offer a simple THANK YOU!