Monthly Archives: October 2012

Moments We Live For

As a parent, it’s usually a constant battle to get your kids to get along, but in the rare moments that they do, it’s absolute heart-warming bliss! The moments may be far and few between, but I know that every parent lives for these moments and carry them with us always.  Aileen and Braxton are just now truly beginning to interact with one another and it’s so awesome to finally get to see that.  Braxton’s developmental delay is about 4-5 months and with his hearing loss he isn’t speaking very much at all so when big sister tries to talk to him or play with him he doesn’t react all the time.  In the last couple of weeks he’s responding to her much better.  Aileen can play with a toy with him or make silly noises and he’ll just laugh and laugh…truly the sweetest sound ever. And now that he’s crawling she can really get down and play with him and let him chase her around. So fun!

The kids and Me

Mommy and her two little loves ❤

Last night was one of those fortunate nights.  🙂 I had the kids in my bedroom watching a movie before bed, Aileen and Braxton were just in their own little world.  At one point Aileen had Braxton COMPLETELY busting up in laughter. Thank goodness for technology! Gone are the days you have to hunt down a video camera and by the time you find it the moment has passed…whipped out my phone and captured several videos of Aileen getting Braxton to laugh. Good belly laughs too! Edited them together for a video that’s sure to put a smile on your face!!

Enjoy! 😀

And then they fell asleep…

Sleepy Heads

Worn out after playing together

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Bittersweet Memories

Today, we had the opportunity to re-visit the place where this journey all began. St. David’s Hospital held it’s annual Neonatal Intensive Care Unit (NICU) Reunion and this is the second year I’ve been lucky enough to take Braxton back to visit.  It’s nice to celebrate and see other families and their success after having spent time in NICU.  But there seems to be a flood of emotions for me that comes with this wonderful event. Most babies who spend time in NICU are there because they were born prematurely, but not Braxton. Braxton was full term and at 8 pounds, he was a giant compared to the other NICU babies.  We felt out of place from the start. We were NOT supposed to be here. This is NOT how the story was supposed to go.  Day after day we walked by the teeny tiny fit in the palm of your hands babies to visit our 8 pound 21 inch long baby boy who no one could give a definitive answer as to why he was being kept, and yet just like the teeny tiny babies, he was fighting for his life.

Braxton was in NICU for 3 weeks and 3 days, definitely the toughest 3 weeks and 3 days of our lives.  The initial neonatologist who admitted Brax was convinced Braxton had a terrible genetic syndrome that would quickly end his life, from that day on Braxton has been defying all expectations and continues to stump the medical community.  We are now 16 months into this journey and still know nothing more than we did those first few weeks of life.  As I look back to those first weeks, I remember all of the nurses who worked with us and cared and loved Braxton so much.  The nurses were amazing.  My first night released from the hospital, we drove to the hospital where Braxton had been transported to and sat there for several hours and the nurse in charge of Braxton that night was so patient and empathetic. She answered all our questions as best she could, offered us advice and encouragement with stories of other babies who’d come and go in the NICU.  She helped me get through all the wires so that for the first time in 36 hours I could hold my precious baby boy. We laughed as we watched Joseph try to change Braxton for the first time. Poor guy was terrified of all the wires and used about 10 wipes for his first ever diaper change.  I cried as I held Braxton because I had no idea what the future would hold for him.  We finally left and went home to try to get some rest before we’d come back to see our baby boy.  This was our life for 3 weeks. Wake up, eat, get dressed go to the hospital, come home to be with Aileen, try to explain to her why she couldn’t go see her brother, try to love on her and make sure she knew we hadn’t forgotten her, then back to the hospital to visit and say goodnight to little man, home to bed to wake up and do it all over again.

Every day we went to the hospital and as our nurses changed, I was happy to see Braxton in such capable hands.  They all knew what was going on with him, if the doctor came by while we weren’t there they’d call and update us, they listened, they talked, they cared.  I’m so thankful for all of them.  While NICU holds many sad memories of what might have been, what could have been, I’m also reminded that they did everything they could to make sure Braxton stayed alive.  And I don’t think we ever thanked them enough.  I’m fortunate to be able to see them again and catch them up on what Braxton has been going through and to be able to thank them again for doing so well with him.  Bittersweet. So many memories, so many emotions, and so many blessings.

The event was really great. This year, Aileen was able to go with us and she definitely had more fun than Braxton, but that’s ok.  The kids were able to wear costumes so that was pretty fun.  I put Braxton in some Longhorn PJ’s that happened to have a Bevo hood, so he was Bevo 🙂 Aileen wore her vampire princess costume and thoroughly enjoyed all the goodies they had, cotton candy, games, face painting, balloon animals, and cake.  I saw a few of the nurses who worked with Braxton and they were all happy to see him doing so well.  Albeit emotional, today was a great day and I’m so grateful that St. David’s puts on this event and I look forward to next year and every year after.

Bevo Braxton

Where’s Braxton?!

Bevo Crawling

Bevo Braxton crawling through the living room

Bevo Braxton

Braxton crawling around

Bevo Stampede

Bevo stampeding through the house!

Face Painting

Aileen had her face painted at the NICU Reunion for her baby brother

 

// Edited to add this photo courtesy of St. David’s 🙂

NICU Reunion

Having fun at the NICU Reunion

 

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Pumpkin Carving Adventures

So last night we finally decided to carve up some pumpkins! I can never get the darn things to keep more than a week so I save the carving for just before Halloween. The kids had so much fun! Aileen and Braxton helped scoop out the “guts” and then Joseph and I carved the designs Aileen picked out. I did also buy a Glow-in-the-Dark painting kit so Aileen could paint a pumpkin, it’s still a work in progress.

Braxton enjoyed crawling around us and using the pumpkin as a teether. Poor kiddo has a mouth full of teeth trying to come through and he’s chewing on everything! Three teeth FINALLY broke through in the past couple weeks, but his gums are still swollen 😦 Anywho, it was fun to have him nearby and engaged. He didn’t seem to mind having his hand in the pumpkin guts either. He played in it a little, but when he started shaking it around mom decided he was done haha Sorry, but we have enough bugs trying to get in, I don’t want pumpkin attracting anything else! (Side Note: I could never truly live in the country. Kyle is just outside Austin and is semi-country so there are a ton of bugs and spiders crawling around. I could only imagine true country living. Gives me the heebie jeebies!! Ick!)

Here’s a look at our pumpkin carving adventure.

P.S. I’m obsessed with collages (if you couldn’t tell) – Photogrid app for iPhone and Android 😉

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Lions, Tigers and Bears, Oh My!

Ok, so no lions, or tigers, or bears 😦 But, ENT, Ortho, and Corn Starch, Oh My didn’t have quite the same ring to it. Busy week around here. Already filled you in on the GI appt, but yesterday we saw the ENT and an Orthopedic specialist.

The ENT visit was just a follow-up to check on Braxton’s ear tubes. He’s had one ear infection since having them placed in April, but no big deal there. Doc said unless it becomes one every couple of weeks there is no concern. As for the sinuses, the Doctor said that at this point going in and probing them really wouldn’t help Braxton. Yes, they *could* do it, but since Braxton’s sinuses are still pretty small there would be very little benefit and having to put him under to do it really isn’t worth it. He also mentioned removing Braxton’s adenoids to help the congestion, but that’s also not truly necessary at this point. With everything else Brax has going on, especially feeding wise, fixing one problem could actually create an even bigger problem. So no additional surgery. Yay.

We also had our first visit with an Orthopedic Specialist to basically get a baseline for his hip and spine. Back in August when Braxton had pneumonia, the chest x-ray noted mild scoliosis. His pediatrician felt it was also necessary to check his hips to rule out hip dysplasia or other issues.  The hip x-ray did note  some delayed developmental hip dysplasia, but really all that means is that right now one side is not as developed as the other. As for the scoliosis, the Ortho did say it was mild for Brax. About a 16 degree curve, but unless it gets to 50 degrees there isn’t anything they would do for it. He recommended in the future for us to maybe do a CT scan to get a better look at the spine to see if any of the vertebrae are not fully formed or fused together, but he’s not concerned with that for now. Basically, for both his hips or spine if either progresses we’d look into splinting or braces before surgery. This also means there is no reason for Braxton to not be able to walk and continue to progress developmentally. Yay, more good news! Definitely one of our better days, appointment wise 🙂

And finally, the corn starch. Who knew?! So far the corn starch has been GREAT!! We’ve increased Braxton to 8 ounce feeds, 4 times a day and have been able to run his feeding pump fast enough to finish the feed in 30 minutes. We have NOT been able to do that in MONTHS!! I am sooo thankful this is working. We are continuing to slowly speed up the pump and eventually take him off of it again.  The periactin doesn’t seem to have kicked his appetite into gear yet, but I know it’s a process. Trying little by little to feed Braxton by mouth and get him back to eating table foods.

So, it’s been a very busy, but overall, a GREAT week for Braxton! We. Are. Thrilled!

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Gastric Dumping Syndrome

Well, this post was pre-empted by yesterday’s exciting events! But, if I don’t write it now I’ll forget. Mommy brain.  Yesterday, Braxton had an appointment with his GI doctor to discuss results of his Gastric Emptying Scan and follow-up on feeding difficulties.

The test was originally done to check for gastroparesis – delayed emptying of the stomach, which the doctor thought could have been brought on due to the pneumonia Braxton had in August. The scan actually revealed the exact opposite! GI has determined that Braxton has Gastric Dumping Syndrome. I’m not going to explain this nearly as well a our doctor did, but here goes… the short answer is Dumping Syndrome is where the stomach empties too quickly. Doesn’t seem like a big deal, but it really is – when the stomach empties too fast the formula gets to the small intestine too soon which signals the pancreas to increase the amount of insulin the body is producing. [Didn’t think you were going to get a science lesson today, did ya?]  His body then absorbs the sugar of the meal way too quickly while his body is also producing insulin. As the level of insulin increases the sugar level peaks and then crashes which can cause vomiting/diarrhea/sweating/lethargy [all problems Brax has had during/after feeds]  This would explain the vomiting Braxton has had when feeding. There is “early” dumping where symptoms can start immediately with feeding and “late” dumping where symptoms don’t happen for 1-3 hours after feeding. Braxton has had both; there are times when he’ll vomit IMMEDIATELY upon starting a feed and times where it’s about an hour later.

So, how do we fix it?

Thankfully, it’s a pretty easy fix. The vomiting is caused by the rapid increase then rapid decrease of sugar levels in the body, so the doctor wants us to add corn starch to each feed. I know what you’re thinking – corn starch?? Well, corn starch is a complex sugar that takes the body much longer to digest and absorb. It also thickens the feed so it moves more slowly through the digestive system.  Since the body won’t be able to absorb the sugar so quickly, this *should* stop the vomiting and we *should* be able to increase rate of feeding and get Brax back to where he was before this big mess. The doctor said “I’m confident this WILL work….I hope” gee thanks doc! =/ He really wants us to work up to feeding Brax 8 oz [he’s currently at 6oz] per feed and get him off the pump again. 

Last night I did try the corn starch and gave him his usual 8oz for the evening feed, but instead of doing it slowly, I ran it at slightly higher than his day feeds annnnnd he kept it down! wooooo!! No coughing, no gagging, no vomiting. So, maybe..juust maybe we’ve finally got this thing figured out! Today, I sent him to daycare with just 7 ounces each feed, just in case it didn’t work as well.  I’m going to very slowly jump the speed of the pump everyday until we can try to get him off of it. 

Also, with regard to actually feeding by mouth. GI would like us to try Braxton on Periactin. Periactin is a medicine that helps to increase appetite and also helps to expand the stomach. GI’s goal with this is to MAKE Braxton hungry so he’ll WANT to eat by mouth again. He said the effects of it wear off after a few weeks so we’ll have to do cycles. Give the medicine for 3 weeks, give him a week break, then start him on it again.  As an added bonus, Periactin is an antihistamine so hopefully it will also help Braxton with all the added congestion he has going on. We see the Ear, Nose and Throat doctor tomorrow and I’m going to bring up the persistent sinus congestion and see what he thinks about going in and cleaning the sinuses out or maybe just seeing what the Periactin does.

*fingers crossed*

Let’s hope this plan works!

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