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Happy 4 months, Peter

posted Oct 4, 2013, 7:50 AM by Melissa Burke

It's hard to believe but we have now had Peter home with us longer then he was in the hospital. Yesterday (October 3), he turned 4 months old (still shy of 3 months corrected age) and we are now starting to see him blossom a bit. Just this week he has really started to track more objects and the smiling is becoming more and more prevalent which just melts our hearts.
 
Unfortunately, since my last post, we haven't made a ton of progress on the sucking front because he came down with a nasty cold almost 2 weeks ago now (undoubtedly caught from one of his brothers - I'm not sure how it is possible to keep an infant well when you have walking petri dishes running circles around him). He's been super congested so I have had to suction a lot which hasn't been helping his oral aversion issues. The good news on that front though is that he seems to be managing through it just fine. I am sure he is annoyed by all that congestion, but he has been breathing just fine, productively coughing and swallowing it down...amazing!  We did a chest xray on Wednesday just to be sure and all looked clear. I have to admit that when we were in the hospital I was somewhat terrified of what would happen when he got his first cold given all his respiratory challenges, but he has proven to be a trooper through it all.  Yesterday we had a great time practicing tummy time (see video below) and smiling at big brothers.  Take a look...
 
Loving swinging on our new porch swing
 
My three sons
 

A good week

posted Sep 20, 2013, 9:18 PM by Melissa Burke   [ updated Sep 20, 2013, 9:22 PM ]

Mr. Peter had a great week this week - here was the play-by-play...
  • Monday, we saw the PT who said he was looking really good - making some good progress on his tight neck (torticollis), head control, and overall range of motion.  All great things.
  • Wednesday, we saw the Speech/Feeding therapist and Peter showed us all how he can suck on a paci - hooray!!  She was impressed and said she didn't think he would get this far already. 
  • Thursday we went to Duke for a follow-up appointment at the Special Infant Care Clinic and besides the car rides to and fro, he did amazing - I don't think he cried all day. It's weird but I actually think he likes going to the doctor after all that time in the NICU. At some point I'm sure he'll come to hate it, but so far, he is a really good patient. Overall, doctors said they were impressed by how good he looks. He continues to pack on about an ounce a day (now up to 11 lbs, 8 oz) and they thought his overall tone looked good. We weight adjusted his meds and started him on a new formula supplement so I'm hoping that both might help with some of the lingering reflux he's battling. I was really encouraged by one exchange with the doctor:
    • She asked me to remind her how old he is and I said three and a half months. She said, no, not his adjusted age, his real age (adjusted age would mean based on his due date of July 4th instead of his actual birthdate of June 3, so closer to 2.5 months). And I said, yes, three and a half months. To which she said, oh, he looks really good, I'm impressed. Can only read into that exchange that she actually felt like Peter looked more advanced then she might expect for him at this stage. Fantastic!
  • Friday saw Peter actively sucking on a paci for a good portion of the morning and seeming to be comforted by it - amazing! He was generally a happy camper all day (except in the car of course) and tonight I managed to put him down without a scream fest. It felt really nice.
So all in all, feels like some great forward momentum. We are praying that we continue on this path in the days ahead.  Still no milk by mouth just yet but hoping if we can continue to get some consistent paci action that we might be able to try before too long. As always, thanks for your contined thoughts and prayers for more weeks like this one!
 
 Ah, shucks, Mom. Are you bragging about me again?
 
Look guys, I can do it!!

Smiles

posted Sep 15, 2013, 9:06 PM by Melissa Burke   [ updated Sep 16, 2013, 7:10 AM ]


Well we are all smiles lately because we have been seeing more and more of them out of our sweet Peter. Particularly if you run his legs back and forth - smiles every time! A few other things that have us happy over the last few weeks...
  • He's staring to suck more and even on a paci (still hit or miss but we've seen it!) Therapists still think it's too early to try anything by mouth but seems like forward progress
  • He's growing - almost 11 lbs last we checked last Monday and gaining about an ounce a day which has the doctors pleased (we go to Duke this Thurs for some follow up appointments so we'll get another weigh in)
  • He's sleeping! We now are enjoying about a 6 hour stretch at night so that's a plus
  • The PT diagnosed him with torticollis of his left side (basically a tight neck) which is not great (Tyler had it too), but we are seeing progress with him being willing to look to the left more and more so hopefully we can help him overcome that bias fairly soon now that we have started the right exercises
  • He can see! Admittedly we were a bit worried but he seems to be noticing and tracking objects more and more (still not totally proficient but much improved!)
We are still facing a few challenges, namely his overall fussiness and fact he wants to be held constantly. I think he's still suffering from some pretty bad reflux (particularly in the evening hours) and we upped one of his meds this week which seemed to help. He still hates his car seat and screams bloody murder nearly every time we put him in it which is no fun. If anyone has any tips that worked for other kids in the same boat, I'd love to hear them!! In the meantime, we'll just take the smiles as we get them :)

3 months - moving towards a new normal

posted Aug 29, 2013, 1:03 PM by Melissa Burke

It's hard to believe, but Peter was 12 weeks old on Monday! He's now been home with us for just over a month. I keep trying to write but it seems that two 3 year olds and a new infant are prone to keep one very busy. But since this week I got the best continuous sucks out of Peter that I ever have, I thought it was due time for an update.

So things have been progressing well on the home front. There was a lot of crying the first several weeks as we worked to get Peter's reflux under control and he got over his g-tube infection. Good news is that we seem to be moving in a positive direction. He still screams bloody murder when I put him in the car seat and basically wants to be held 24/7, but at least he's now consolable and enjoying some good content awake time. As I was walking with him in the front carrier around our neighborhood earlier this week and he seemed totally happy just enjoying the fresh air, I got to thinking that maybe we are finally both getting used to each other. Perhaps we are edging our way closer to our new normal and we can now relax a bit and enjoy him being part of our family instead of stressing out that we need to analyze everything he does or doesn't do. At least that is what I'm hoping for.
 
A few highlights from his first month at home:
  • Graduated from the monitor during the day because he continues to prove his ability to manage his secretions (still keep it on at night for peace of mind)
  • Baptized with his brothers in a private ceremony when his Aunt, Uncle and cousins were visiting from Chicago (thank you Meta!)
  • Continues to pack it on - last Thursday he weighed 9 lbs, 12 oz (about an ounce a day and the doctors are pleased)
  • Up to date on his immunizations after staggering a bit
  • Now have both PT and speech/feeding therapies set up to come weekly to our house
  • As I mentioned above, starting to get some really good sucks out of him with my finger. Hope we can try some milk by mouth before too long
  • Discovered he absolutely loves being outside so we have tried to stroll and walk as much as possible - so thankful the weather has cooled down a little! - too bad someone stole my rockers on Tuesday right off my front porch in broad daylight...they were one of Peter's favorite spots so we are so sad. Guess the streets of Raleigh are a bit tougher than I thought!
A few pictures of our sweet Peter as of late...
 
Enjoying a stroll
 
Getting in some tummy time
 
Showing a little smile :)

First week together at home

posted Aug 5, 2013, 2:11 PM by Melissa Burke

It's hard to believe, but it's already been 1 week since we brought our sweet Peter home from the NICU.  Sorry it has taken me a bit of time to write this latest post, but as you can imagine, free time is basically non-existent at the moment. Since our trip to the ER last Sunday, Peter has continued to keep things interesting. On the positive side, he seems to be handling his secretions much better this past week. Last night I think his pulse oximeter (monitor) only went off a few times and since we have brought him home, I can't really remember a time that we had to intervene when he had one of his dips. So it's a relief that the respiratory issues might be behind us (fingers crossed!). We made one change to stop continuous feeds at night and that seemed to make a big difference to help him manage the secretions better, so now he's on bolus feeds every 3 hours around the clock and seems to be tolerating them really well.  Today he was 8 lbs, 9 oz (up 11 ounces over the week), so he continues to pack it on which was our main goal as we transitioned from the hospital (hooray!).  We went to the pediatrician on Friday and he thought Peter looked great all around (see video below).
 
But the crying has been a different story. Since he has been home I noticed that he would get really upset whenever we would feed him. Initially we chalked it up to hunger since he would typically calm down after he got a certain amount in his belly (we estimated about 12 ml to be the magic number :) ), but starting mid-week he started to get really irritated during the entire feed.  Over the weekend, he just about cried every minute he was awake and had a really tough time when anyone would set him down. The crying was rather alarming - I just felt like he must be in pain for some reason. Our neonatologist heard it on Thursday and was so alarmed that she called for a fluoroscopy (basically a video xray) to check that his g-tube was indeed emptying into his stomach and not the abdominal wall (they test it by injecting a die into the tube to check where it goes). Thankfully, it was, but that didn't stop Peter from continuing to be upset over the next several days.
 
Finally yesterday, I noticed increasing redness around the site and Peter had a very slight temperature again. I took pictures and sent them off to our doctors at Duke and the conclusion was that it was definitely infected. We started him on a course of antibiotics last night at midnight and after 2 doses this morning, he was like a totally different baby. He was looking around, alert and happy.  He even let us set him down for a while and now he is resting comfortably in his car seat (something that he screamed bloody murder about last week). So, I don't want to claim we have figured out all of the crying but I am hopeful that we might have our sweet P back. How horrible if he was having extreme pain in his stomach for mutliple days! I just try to remember that he won't remember any of this (and thank you for all of you who continue to remind me of this), but it's hard not to blame yourself for not figuring it out earlier. Here's hoping that there are only blue skies to come.
 
The rest of the week was spent getting to know each other a bit more, especially big brothers Jackson & Tyler. They have been really great with him so far. Tyler was even giving me some tips for how to hold him to get him to stop crying..."No Mommy, you need to rock him like this <he crosses his arms in front of him and sways them side to side>." And you know what...it actually worked that time! 
 
Hi brother Jackson...that story is soooo interesting
 
Oh hi, Tyler. Are you going to teach me everything you know?
 
The Burke Boys
(this is what I get when I ask them to say cheese)
 
Enjoying my bouncy - nice to have some different options than a hospital bed!!
 
Peter at pediatrician last Friday
(upon which the doctor said, "wow - he looks really good! I think he's going to surprise us." -
all good things to hear :)
 

Welcome home, Peeder!!

posted Jul 28, 2013, 9:41 PM by Melissa Burke

We made it!! After almost 8 weeks in the NICU, Peter is finally home! It's been an eventful 24 hours, but I can't believe he is sleeping right next to me in his crib as I write this. We finally were discharged from Duke about 5pm yesterday evening after we sat around for hours waiting for paperwork and hoping that they weren't changing their minds. But they let us go. I couldn't help feeling elated but a little bit terrified to have him all to ourselves. But he loved the car ride (fell fast asleep) and we had a good night last night (he slept for most of it and didn't really have any significant Brady/desat episodes to speak of). I even walked him around the house with no monitors for awhile!! We felt so free!!

So we were excited to spend Sunday just relaxing all together as a family, finally...but Peter had other plans. We ended up spending 8 hours in the Duke emergency department today because Peter decided to wake up with a fever of 100.9. Funny thing was, he was acting terrific. Sats were great, he was happy, he slept well throughout the day, but everyone was a bit freaked out. So after load of tests - blood work, urine culture, spinal tab for meningitis - which all came back normal, we managed to skirt by another admittance back into the hospital. They let us go with a shot of antibiotics and the promise to get one follow up at the pediatrician tomorrow. So all in all, not quite the Sunday we had bargained for, but we are glad we made sure it was nothing serious and now we can get to work getting him acclimated to his new home!  Have some great pictures of him with his big brothers that I will try to get up in the next day or so, but here is the sign they made to welcome him (with help from our awesome nanny, Holly) - it's been up since Monday when we thought he might be coming so we are all excited for it to finally be true!!


It worked!!

posted Jul 27, 2013, 11:18 AM by Melissa Burke

Turns out our boy was just a little blood thirsty. The day after his transfusion he was much pinker, less irritable, and much better on the respiratory front (he passed his 90 min car seat test without needing any intervention which many were skeptical if he could do). Yesterday, I got him to give several good sucks on my finger and we did his PT exercises without too much of a fight. He also stopped doing those weird episodes they thought might be seizures. All in all, he just seems like a much happier camper.

So, we finally got to room in last night. Besides the hospital monitors going off all night because the sensor was bad, it was a pretty good experience. And Peter has been great all day as we are just waiting to get discharged. I think there is a lot to be said about being in a quiet room without monitors blaring every 2 seconds and doctors wanting to examine him. He just seems a lot more peaceful. Hopefully this is a sign of things to come and he will continue to thrive once we have him home. Will update everyone once we hopefully get him out the door!!

Peter wide awake and calm the evening after his transfusion

Patience

posted Jul 25, 2013, 7:10 AM by Melissa Burke

So, we are still not home. Good news though - after over 36 hours hooked up to the EEG machine (poor guy!), the results were once again negative for seizures. But the doctors feel like Peter is having more Brady/desats that make it unsafe for us to bring him home at the moment.

We discovered yesterday that he is pretty anemic so we decided to give him another blood transfusion in the hopes that will increase his oxygen carrying capacity and hopefully stop the episodes. The frustrating thing is that he was supposed to be getting iron to help with the anemia (as all babies are anemic in the beginning) but I discovered on Tuesday that somehow he wasn't getting it. It was discontinued after his last transfusion and we were told it would be reinstated last Saturday, but that never happened. I sometimes joke that going to the hospital everyday is my new job, but situations like these make me realize how important it is that we are at the bedside everyday to watch over Peter's care and ask the right questions!!  Regardless of why he's anemic, we are praying that this might be his magic ticket home. We are going to observe him over the next several days to see how he responds and then maybe we can retry the room in over the weekend.

Interesting developments on the MRI front...WakeMed came back and said they were sticking with their initial interpretation of Peter's 8 day MRI (the one were they said things looked much improved). Also, apparently his films were discussed at a radiology conference at Duke late last week and none of the neuroradiologists could agree on the interpretation. So the lack of consensus gives us hope. Again, the MRI is just one prognostic indicator and if no one can agree on what it says, then we'll just have to have the patience to wait for Peter to show us what he can do. First step...getting him home. We know it will still be a long road ahead once we do, but all our energy is focused on it for the time being. We'll pray for patience for the rest.

Our sweet bundle

A short delay

posted Jul 23, 2013, 6:30 AM by Melissa Burke

Well, unfortunately, we weren't able to room in yesterday. Good news is that we received all of our home equipment so we are ready to go. Bad news is that they were slightly concerned that Peter might be having seizures so they wanted to be safe and do another 24 hour EEG just make sure before sending us home. The neonatologist told us it would be unlikely because he has been ruled out for seizures in the past, but he doesn't want to leave any stone unturned, which we can appreciate. So we are ok with the slight delay. The older boys have actually picked up a nasty cold/cough and I was a little worried about bringing Peter home into that environment, so perhaps waiting a couple days is better in the end. The hope is he can still come home this week...will keep you posted!!

Preparations

posted Jul 19, 2013, 3:48 PM by Melissa Burke

Well, while I don't have anything new to report on the perplexing MRI saga, I do have great news...we are making plans to bring Peter home next week!! Current plan is Tuesday or Wednesday. We have to wait for all his supplies to come in (we are going home with a pulse oximeter, oxygen, and suction equipment just for peace of mind and of course the equipment for his g tube). Then we have to "room in" with him for at least 1 night at Duke so we can feel comfortable using everything while the nurses are still there to intervene/assist. I actually think that is a great idea - I don't think I'll mind using some training wheels for a night or two. We are planning to do that Monday night. Then if all goes well, we'll be home by the end of the week. I feel like this will be such a great milestone that all the talk of the future and potential struggles has faded for a bit. We are definitely ready...

Sweet Peter now very alert following his surgeries
and getting ready to come home!!

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