12 Weeks: Our Giggle Monster!

To start off,  HAPPY 12 WEEKS Sweet Baby O! It has been a while since we last updated, but things have been quite busy around here!

Baby Owen started Occupational & Physical Therapy through Early Intervention 3 weeks ago. Initially, we had some kinks to work out -- clenching of his fists and favoring his right side -- but they have since resolved for the most part! He is just doing SO great developmentally, we couldn't be prouder! He is already bearing weight for long periods of time on his legs and is now reaching and grabbing toys with BOTH hands! Also this week -- he discovered how to giggle! We just love our little playful smiley boy!

We had a 23-hour EEG test at Children's on February 17th to try and see what was happening during his episodes. He did end up taking some during the evaluation, which we were pleased with because we needed the Doctors to see them in order to try and understand them. We have since received mixed results on the testing, and will have to wait until next friday's Neurology appointment to discuss it further.

Little Owen also had a Barium Swallow Study 2 weeks ago to determine if it was safe for him to continue to consume regular liquids because of the constant struggling, gagging, choking and noises he was making during the majority of his feedings. Basically, they mix formula with Barium to make it show up as they conduct a moving x-ray picture as he swallows. It is videotaped so that the results can be reviewed and analyzed in slow-motion.

The result of the study was that he was silently aspirating, which means the liquids were escaping into his airways but that he was showing no outward signs of distress or choking.  When food or liquid enters the airway, a protective reflex triggers you to cough to propel the food/liquid upward and prevent it from entering the lungs. Baby Owen does not have this reflex/sensation.

As you may know, aspirating liquids in to the lungs can lead to respiratory problems, such as pneumonia, which is definitely something we don't want anywhere NEAR Baby Owen (or anyone, for that matter!) He will not be allowed to consume any kind of regular, non-thickened liquids until we have a follow up swallow study in 4-6 months to see if he is still doing this. Yes, it's a little disheartening to encounter yet another issue, but it's just another branch on the tree that is Baby Owen -- there are ways to deal with it if he is still silently aspirating at that point, such as commercial thickeners for water, milk and juice.

He now has to have his formula extremely thickened with rice cereal -- 1 tablespoon per ounce! Over the days following the swallow study, he seemed to have taken to the new consistency. Although he was eating a little less, (he went from around 24oz a day to around 20oz a day) the new way seemed to work for him up until a few days after that, when his feeding problems returned. He once again starting pushing the bottle away, making odd noises and just being plain irritated during feedings.

Fortunately, we were able to get in the following week with a feeding team for the second time at Children's. They witnessed his feed and the result was that we were not thickening based on how much the formula expands when you mix it with water. So we were sent on our way with the new information, in hopes of fixing the problem permanently this time.

That same week, we had an appointment with the Ear, Nose & Throat team at Children's -- the swallowing team had referred us to them so we could get a "scope" of his airways to try and get to the root of the problem, if there even was one. The team put a scope up his nose and down into his throat (yes, he hated it!) and fed him regular formula and also his thickened formula. We were able to see exactly what was happening - the regular formula was escaping into his airways and the thickened formula was doing it's job and going to the right place.

On the scope, they confirmed that Baby Owen was silently aspirating -- whether this is linked to his traumatic brain injury or not, we don't know for sure just yet but, he definitely is missing the sensation of liquids escaping down the wrong pipe.

They saw two other things we were unaware of:  that he has a Laryngeal Cleft Stage 1, which they were not going to immediately do anything about, in hopes he would grow out of it in a few months or so.(http://www.childrenshospital.org/health-topics/conditions/laryngeal-cleft) He also showed the typical signs of having a "floppy airway" or "laryngomalacia" - which may have been responsible for his labored breathing and overall squeakiness. (http://www.chop.edu/service/airway-disorders/conditions-we-treat/laryngomalacia.html)

So, the plan was to stick to the thickened formula. The Dr's opinion was that hopefully he would grow out of this in the coming months and have a follow up appointment in 3 months.

Unfortunately, O3 had begun taking choking spells when just simply lying on his back over the last few weeks. Some big, some little. Last thursday, he took one around 4am that flung us out of bed to get to him so that we could help him catch his breath (thank you, bed side crib!) The doctors just assumed it was an acid reflux issue. While the episodes did scare us half to death, he seemed to recover fine each time. Until now.

Tuesday night around 10PM, we put Baby O down in his crib thinking he was out for the night. Owen and I stayed up to watch a little TV before going to sleep. About an hour later, we heard the baby making a weird sound. I came over to his crib only to see my worst nightmare - Sweet Baby O was choking hard. Extremely red, foaming at the mouth, completely stiff and not breathing. I grabbed him out of the crib and made an attempt to get him to breathe but I couldn't, so I handed him over to Owen. As he was trying different methods to help Baby Owen catch his breath, I rushed to call our home nurse to walk us through other things we could do to help him. He told us that after he caught his breath, to roll him on his right side until it seemed like he was calming down, in hopes of helping the fluids he was choking on migrate. He also said that from the sounds of it, Baby Owen was choking on his own secretions and to go immediately to the Children's ER.

We hurried up and wrapped him in a blanket and rushed the 2 blocks up the hill to the hospital. Once there, we ran through to Emergency, explained he had been choking, was prone to seizures and silently aspirating, and we were immediately taken back and seen. They did a chest X-ray soon after, to determine if he had aspirated any fluids during the event. The results showed that his lungs looked "okay" for now. They explained that we would have to be admitted given his history, to see what was causing these horrific choking episodes.

Baby Owen was observed overnight Tuesday and seen by a few different teams Wednesday morning. Initially, the plan was going to be to adjust his acid reflux medication to a different brand and go from there. However, while the doctor was explaining this suggestion, Baby Owen once again took two more harsh choking spells and the doctor instantly changed his mind. His new opinion was that we should get on the "add on list" for surgery the next day (Friday) -- a procedure to fill his laryngeal cleft and a procedure to "snip" open his floppy airways. They are hoping that by doing these two things, some of these breathing and feeding issues can possibly be alleviated. They cannot, however, guarantee that this surgery will do anything to fix the problem of him aspirating on his own saliva. There is only a chance this could resolve the issue. If not, this is something that will hopefully work itself out in time.

Since we are on the "add on" list for today, we are just hanging out with out sweet baby boy and waiting for them to have an opening to take him in. We are quite nervous for him to be put "under" because of his brain injury, but we know our boy and he's strong enough to handle coming off of the anesthesia! He has been having choking episodes left and right since we've been admitted and although it breaks our hearts to watch him struggle, we are certainly confident that the staff at Children's will not let anything happen to him.

It seems so crazy that just Tuesday he really giggled (like a maniac!) for the first time and that night we ended up in the ER, but such is life. He will continue to giggle through all of his trails and tribulations, and will always be the little warrior in our lives! <3

As always, the three of us are SO thankful for the love, support and prayers our way.

HAPPY 2 MONTHS, Sweet Baby O!

Seriously... 2 months!?!? My oh my. Where is the time going? Somebody make it stop! Or slow down, at least.

Just wanted to update on what's been happening the past couple weeks!

So... Baby Owen had his evaluation for Early Intervention last week and started Physical & Occupational Therapy this week. However, he only qualified for the services because of his condition - not because of anything he was or wasn't doing! Which is GREAT NEWS! He scored high on mostly everything except clenching his fists and favoring his right side -- most babies do both of these things! So Owen and I are working on getting that tiny little head to "look left!" and have been massaging his arms & hands to help release his fists. Both are going wonderfully! He really is looking left more and is not clenching his fists as much! However, he does not like the exercises! Haha. Go figure.

The only thing they are concerned with is the way he eats which, to be honest, Owen and I have asked about repeatedly from the start.  He always seemed so noisy/anxious/agitated during most of his feedings. He also seems to take some of his seizures during burps. Well, now we are going to have a swallow study done at Children's to see what's going on. There's a number of things it could be, and hopefully it's only a matter of thickening his formula with cereal so he slows down! He definitely is a gobbler :)

A main concern is severe acid reflux, which obviously is not like your average baby's acid reflux. Some of his tantrums may not be seizures, but could be reflux spasms. Luckily this week, we got about 6 of his episodes on film (finally!!). We start Zantac tonight to see if anything changes at all.

Next Monday he has a 23-hour EEG @ Children's. Though we hate to see him take them, we are REALLY hoping he will take a few episodes for them to catch on the machine so we can try and get more answers. That really is one of the hardest parts -- no answers. There's so many things that could be going on. Infantile spasms is what they are initially thinking, but that is just the beginning. If it doesn't appear that that is what's going on, it still could be what's going on. Does that make sense? Nope. Not to me either. But apparently infantile spasms like to disguise themselves initially on the EEG. Sad face.

O3 had a few bad days this week. Yesterday his took 14 seizures in 20 minutes. That was rough. But, we came out of it smiling, as always. Always such a happy boy.

A lady told me last week about an article on "skin to skin" contact reducing seizures, so we decided to try a lot of that this week. I must say, it REALLY helped! So we thank her for her input. :)

Other than a few bad days, overall Baby O is doing great. We continue to thank everyone near and far for their love and support -- please know that we could not be as strong as we have come to be without you! Everyday we get closer to the day where we will hopefully have more answers. And for now, we just love our sweet little warrior baby.

Here's some of his pictures taken today for Valentine's Day. Enjoy! :)

6 week update!

I cannot believe Baby Owen turns 7 weeks this Thursday! I wish time would slow down a little. He's growing remarkably fast -- weighing in at 11lbs 9oz today at his follow up pediatrician appointment.

Unfortunately, last week we started noticing some new kinds of seizures in Baby O and the doctors were/are concerned. By "new" seizures, I mean that they are different from what we were becoming used to seeing in him. He had taken a "cluster" of seizures Wednesday night of last week - 6 within 1 hour. We had never seen more than one at a time before. We were admitted to Children's Thursday night for testing and another EEG. They were concerned that he was starting to show signs of infantile spasms - a form of seizure that he is at high risk for with his brain injury. They did a 45 minute EEG and saw no evidence of infantile spasms, yet. I say yet because infantile spasms are a form of seizure that do not show up on the EEG right away - it can take a couple weeks for the doctors to be able to see that kind of activity on the machine. Baby Owen did so well with everything, and we are so proud of him. We were discharged on Friday. He will have a follow up 12 hour EEG in the upcoming week which will hopefully give us more insight as to what these new seizures are and what they will bring to the plate.

At first, I was terrified of new seizures. I thought the ones he has had since birth were what we would be dealing with forever. I was very wrong. As a newborn baby, your brain is doing so many things and growing a tremendous amount every day. On top of that, we really don't know the true extent of the damage until we get our next MRI. Of course his seizures were going to change. With everything that is going on up there, how could they not? But, like I said, this is not something we had prepared for initially. After our doctors appointment today, we now know that they will most definitely continue to change and that we could cycle through tons of different medicines before they find a combination that works, and doesn't allow for many "breakthrough" seizures - which is when, when medicated, the person still takes seizures and is "breaking through" their dosage. This is VERY common in infants/children because of weight gain, which the dosages are based off of.

There is still so much unknown. We are working on trying to recognize seizures. We know that he takes them when he gets worked up - he's proved that theory multiple times. Right now, Baby O is lounging beside me on his boppy. A few minutes ago I reached over to touch him and I startled him - he took a seizure. So maybe being startled is a trigger for him -- or maybe not. Maybe he would have had one regardless. There's just no way to know. All I can do is pick him up and snuggle him for as long as he'll let me afterwards which sometimes is until he falls asleep, and sometimes is for 10 seconds.

His Trileptal dosage has been increased and he remains on the Phenobarbital, even though it was to be pulled this week. We were really looking forward to that happening in hopes it would help in his alertness. But it is just a small obstacle on a long, windy road. Remaining on Phenobarbital is not the end of the world.

This Friday he has his initial testing for Early Intervention, so that they can see the areas they need to start working with him on. We're pretty excited about it. We met with our coordinator last week and she really is great. Very knowledgeable and we can tell she is going to be such a big help!

So that's all for now. Tomorrow is his home nurse visit and life goes on, of course. We continue to have faith and stay positive -- he's such a smart, loving, happy baby (who LOVES to kick his socks off -- seriously where did that sock just go?) and we are so lucky to have him in our lives.

xoxo.

          

Our little guy is officially a month old!

                                       Happy 1 Month birthday to our sweet little man!

Last night he slept for a 7 hour stretch. We couldn't believe it! We think it may be from the medicine switch but there's no way to know for sure. He's been eating 5oz at almost every feeding for the last 2 days -- beefing up on us!

Since it was 52 degrees out yesterday, he had his first stroller ride outside on Butler Street. Of course he slept through most of it. :)

 

He had a very busy day today -- church in the morning and then exploring the Strip District for the first time with Mom, Dad, Grammy & Poppy! We had lunch at Roland's and then showed him Penn Mac, of course.

We are really excited because tomorrow Early Intervention is coming to evaluate him! They will be able to tell us what kinds of exercises we cant start working on him with and we will be set up with different kinds of specialists who will come to visit our little lovebug. 

When we first received the bad news about the possibility of losing Baby Owen within the next year, Owen and I came up with an idea to take (awesome) professional photos each month with him -- to commemorate the milestone of being with us another month! Our dear friend Dani will be helping us do this for him.Enjoy some of his 1 Month photos below taken today!

               Happy 1 Month Baby Owen -- We love you sooooooooooooooooooooooooo BIG! :)

                                                                                         

Happy 4 Weeks Baby O!

Our little guy is 4 weeks old today! We can't believe how fast it's going! Last night he slept for his first ever 6 hour stretch -- making his parents very proud (and rested!) Grammy got to visit today for a little and even though he slept through the visit, his cute little face lit up and he knew right away who was holding him. Seeing him smile is one of the best things in the world.

Here are some pictures from his little photo shoot this morning... ENJOY! :)

Our first neurology appointment!

Hi All!

Today was our first neurology appointment since being in the NICU at Children's Hospital. It went great. The doctors cannot believe how good sweet Baby O is doing! The first thing they said was "You're really fooling everyone, aren't you little buddy?" :)

All of his reflexes are great, and he is doing everything a baby his age (almost 1 month!) should be doing. His head/neck strength is great, his overall tone is good, and those little legs are getting quite strong! You would never know that such a traumatic event has even happened to him - he is so happy and full of life!

They did not schedule an MRI today because they want him to be a little stronger so that when they sedate him for it, nothing will go wrong. So I think we will be having his next one in 3 months or so. With how good he is looking, there is hope that the bleeding has absorbed and that the tissue underneath isn't completely devastated. We will remain hopeful for the best outcome, but will not lose sight of the truth. What has happened to him is considered "devastating." He has clotting AND bleeding in his brain, and they can only assume at this point that the bleeding has stopped. We know that the MRI could show worse results than the doctors predicted, and we have to be ready for both scenarios no matter what.

We are starting a new medicine tomorrow, Trileptal, and will be weaning him off of the Phenobarbital eventually as it can cause developmental delays and we don't want anything standing in the way of his progress. He will take more seizures over the next few days with the introduction of the medicine, which is one of the worst parts. They are so quick yet so terribly sad to watch him go through. It breaks our hearts all over again each time he takes one, but we know that we have to be there to comfort him afterwards.

He's currently laying next to me kicking and talking up a storm! He's taking 4-5 oz each feeding and is now sleeping in 4 hour stretches. He's recently discovered how to suck on his fingers and we've recently discovered that he LOVES having his forehead rubbed and he also loves his back side patted as he falls asleep.

For those of you who want to know how Owen & I how are doing... our answer is GREAT! All we can hope for is to have the chance to do everything within our power to help him - emotionally and physically. We cannot wait to start all of his different therapies with the developmental team next week!

O3: Our incredible little fighter.

"Your baby Sagittarius will get into all kinds of trouble before he can walk, so don't be surprised! Sagittarius children like to explore well past the boundaries set for them by their parents."


Sweet Baby O3. Where do we start? 

First, let us just say that without the support system we have, we could have never made it this far. The week spent in the NICU was full of highs and lows and we are so thankful that our family & friends were there to support us. We can never repay you for the love and strength you showed us during such a difficult time.

We never thought we'd have to endure so many obstacles in such a short time with Baby Owen. Since finding out "IT'S A BOY!" at our 18 week appointment, we developed so many ideas of who we thought he'd be -- never could we have imagined that FIGHTER would be the best word to describe this little guy. But I guess maybe we should have, since the Celtic meaning of the name Owen is "Young Warrior." How fitting.

My water broke Wednesday morning at 2:42 a.m. In my sleep. Eek. We (surprisingly) were somewhat calm and gathered our things to make our way to the hospital. Shortly after arriving we were admitted to Labor & Delivery and began our 27 hour journey to meeting little Baby Owen.

After a very long, exhausting Wednesday, things started to get complicated. Baby Owen was being stubborn and wasn't making any signs of making his big debut. Against my original plan, I opted for an epidural earlier in the day which (unfortunately) didn't work. I was started on Pitocin to bring on contractions and they continued to increase and decrease the whole day through. By 10pm Wednesday night, we were starting to get nervous. Then by midnight, we were made aware that around 2AM we would start actively pushing after more rounds of Pitocin. 

By 2AM, everyone was exhausted but excited to start our final leg of the labor... delivery! Unfortunately, things got more complicated.  Baby Owen was stuck in the birth canal and every time we made some progress, he retracted back in. This went on for hours. Around 5 a.m. things were starting to get tense, and we were asked if it was okay for them to try a vacuum to assist in getting him out. They tried twice and on the second try, his head finally came out but resulted in a Shoulder Dystocia. This is when, after delivery of the head, the baby's shoulder becomes stuck. Shoulder Dystocia is extremely rare. Once this happens, you have a very short time to get the rest of the body out (around 6 minutes).  A "Code O" was called in the hospital and our room flooded with doctors and nurses. About 90 seconds and A LOT of work later, Baby Owen was finally out. 7lbs 1 oz, 21 1/4 inches long and a head full of dark, crazy hair. It was 5:34 a.m.

He didn't cry for a while. I wasn't exactly sure what was wrong with him because of how much was going on -- all I had been worried about was getting him out. I looked over and saw them working on him --  my Mother and Husband's faces were filled with worry. A short while later I finally heard his cry and nothing has been the same ever since. As it turned out, he didn't breathe for the 90 seconds where his head was out and body stuck -- they had to do a little work to get him up and moving. But he recovered and was seemingly perfect. Since he recovered so well, the doctors did not think that a stay in the NICU was necessary and that he could go to our room and be with us.

Fast forward 2 days (and no sleep!) to our discharge day. Baby Owen had started throwing what we thought were small "tantrums" at the time. He would get very red, violently arch his back, stiffen his limbs and let out a shriek unlike any baby cry you've ever heard. We're new parents. For all we knew this could just simply be what we signed up for by choosing to become parents. These episodes weren't happening very often at that time and when we asked about them, the doctors thought that it was just newborn baby behavior. As it turns out, it was much more.

We took him home that day, Saturday December 14, 2013 -- our original due date. His "tantrums" continued and by Sunday they were happening a lot more frequently. He spent the day Sunday shrieking and it was almost impossible to soothe him. By our Monday morning follow up appointment, he was having them about every 3 minutes. As soon as the doctor noticed the weird movements he was making, she got a second opinion and then sent us to the ER in Children's Hospital. Luckily, his doctors office and our home are both 2 blocks away from Children's and were able to get there immediately.

Once getting there, we were seen right away. After a few minutes of being in our ER room, the doctor and nurses came in and as soon as the nurse picked Baby Owen up, he went blue. After working on him, he recovered but was immediately admitted into the NICU for seizure like activity. The first thing they did was a head ultrasound of his "soft spot" to see if there was anything out of the ordinary they might be able to pick up before doing an MRI. And so the heartbreak began.

They were able to see a large brain hemorrhage on the ultrasound. They ordered an MRI for that evening so that they could understand as much as possible about it. He was started on Phenobarbital immediately to decrease the seizures - which would sedate him for the majority of the following days. They also had him on and off of the EEG machine to monitor the seizures activity.

On Tuesday, we had our meetings with the doctors regarding the MRI findings. The medical wording for what has happened to Baby O is a "Grade 4 intraventricular hemorrhage and bilateral thalamic hemorrhagic infarction." What this means is that Baby Owen has suffered a large brain hemorrhage (clotting and bleeding) which has devastated his thalamus, your brain's sensory switchboard filtering your life functions. It's primary role is to gate and otherwise modulate the flow of information to cortex. For example, visual information from the retina is not sent directly to the visual cortex but instead is relayed through the thalamus. It also receives auditory, somatosensory and motor signals. 

Since the devastation is so large, they can almost say for certain that he will never walk, talk or maybe never eat anything more than formula. Their experience with similar cases in the past tell them that around 9-12 months, Baby Owen will not be able to take in enough calories to support his growth, nor will he be interested in doing so. This is just what they think will happen. There is no way to tell what his outcome will be for certain -- every baby is different and babies are extremely resilient. 

On top of that bad news, his neurologist also believed that his gag reflex would not return, which would prevent him from eating once he was no longer sedated from the medicine. Without a gag reflex, he would not protect his airways and would aspirate. Owen and I were told to prepare for the strong possibility of losing him by the end of the week. The week before Christmas.

However, the following day as Owen and I were returning to Baby O's room from the cafeteria, we walked in on the neurologist testing out O3's gag reflex -- suddenly it was back. And it was getting stronger. We were told we could try feeding him an extremely small amount later in the day, but with the chance of him aspirating during the feeding. You can only imagine how confused and excited we were at the same time. With the help of our amazing nurse, we offered him just 5CC's of breastmilk from a bottle and guess what? He drank it perfectly (with both sets of grandparents standing by and cheering him on!) Through the next few days, we increased his feedings and before we knew it, it was up to taking 1-2 oz each time. 

Through all of the chaos and excitement with being able to feed him, Baby Owen was taken on and off the EEG machine twice. The machine did not pick up any seizures after placing him on phenobarbital - which is definitely a good thing. However, it's important to know that the seizures are a result of his brain injury and he will take them for the rest of his life. 

So where do we go from here? Day by day is the only way to do it. Yes, it's very hard to think of who we thought he'd be, where we thought he'd go, or all of the talks we had before he was born about the sports he'd maybe play or if he'd run triathlons with his strong Daddy -- but we're on a new path now. One that is filled with so much love and appreciation for each moment we have him here with us. If you've never heard of the short little inspirational story called "Welcome to Holland," please take a minute and read it below. Also, share it with anyone you know could benefit from it. I think I read this 50 times a day the week we were in the NICU and continue to read it a few times a day since. It has been such a help in accepting our situation. And Holland really is quite lovely. 


We will continue to update on his appointments, development and the many adventures we will be taking him on. We now have a home nurse twice a week and will be starting with a developmental team this month. We can only hope for the best and continue to pray and ask for prayers for our sweet little superhero.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned. And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.