Latest on Liam

So I know everyone loves to hear how Liam is doing, and that is one of the reasons I was inspired to write this blog. Sometimes my updates would be WAY to long for Facebook. As many of you may know, Liam was recently diagnosed with baby asthma. Our poor little guy has also had multiple bouts of croup, as well as bronchiolitis - there were times Liam had both at the same time.  After months of being on albuterol nebulizers Liam still had some noted wheezing. I remember when Justin took Liam to see the pediatrician and we were told that even though his wheezing had not been audible, the reason Liam wasn't sleeping through the night was most likely because he felt like there was an "elephant sitting on his chest." I felt so bad for our little man, and was hoping he could catch a break sometime soon. When daily singular didn't clear up the issues Liam was put on a steroid nebulizer called Budesonide. Fortunately, since Liam started this medicine his breathing has improved! He still needs an occasional albuterol treatment here and there, but overall his asthma has been well controlled. Liam was also treated for 5 ear infections during his first year. In the beginning of December, Liam had Eustachian tubes placed. During the first follow up with the surgeon, we were told one of Liam's tubes was blocked with dried blood from the initial surgery.  We were hoping the ear drops would help clear up the blood, and it did! After this, Liam continued to have thick drainage that was starting to block the tubes.  Liam has been on 2 different types of ear drops to help control the drainage, and when these didn't help clear up the drainage the doctors prescribed a strong antibiotic for Liam to take. We recently finished this and it seems like the drainage has cleared up. We are very hopeful that the tubes are a success and Liam wont need another procedure. Usually after the procedure the babies get a hearing test to check their hearing, many times the ear infections cause scarring in the ear and this can impact the babies ability to hear. Liam has not been able to have his hearing test completed due to all of the drainage.  Hearing loss can contribute to speech delays. We recently had Liam's 12 month well visit with our pediatrician, and although Liam makes plenty of noise he is not consistently making 3 sounds that "have meaning." The doctor requested the county complete a speech evaluation. I feel strongly that Liam is going to do just fine, but I am concerned that he may have a bit of hearing loss. Also, he did just start in the toddler room where he is exposed to much more talking then in the infant room and I am sure his "words" are right around the corner. Liam also just started on his round of 1 year follow ups. So far the only one we have completed is with the developmental doctor. Her name is Kimberly Kuchinski, she is the Program Director of Pediatric Physical Medicine & Rehabilitation at Good Shepard. We are blessed to have such an amazing team of doctors. Justin took Liam to this follow up, and the report we got was great. Dr. Kuchinski says Liam is doing great, developmentally he is exactly where he should be, we had some minor concerns over the past year about some of Liam's mannerisms, and we were reassured that Liam is not showing any abnormal signs of development. We were warned that he will still need to be watched closely, as Liam is still at high risk in the upcoming year for "tone issues." Liam will continue with physical therapy twice monthly as well as all of his other follow ups. We are so proud of our little boy! Upcoming appointments include seeing our neurologist, Boosara Ratanawongsa (Dr. Boo.) Dr. Boo used to be a neurologist at the Lehigh Valley hospital, however  she left to work in King of Prussia at the CNNH, the Center for Neurological and Neurodevelopmental Health. We were strongly urged to travel to see her as she has a great reputation, after not initially being happy with the neurologist through the Lehigh Valley hospital. Liam and I will be traveling to see Dr. Boo on Valentines day, and I am expecting a great report and will update further on our appointment later. We also will need to have our follow ups with the NICU clinic. This is a 2 step process in which we see the therapy department first, scheduled sometime in Feb. and then we see a NICU doctor in March. The clinic follow ups are important because the results of the head cooled babies goes to a national study, and as a nurse I know how important these studies are to getting this treatment the recognition it deserves. I am currently unhappy with the availability of the rehab appointments, as they have canceled two appointments with us after I changed my work scheduled! and only have a few spots open per month. I have put a call in to the director of the department in hopes that we can work something out. I will update more on these appointments soon. Liam continues to amaze me everyday with his development. He now brings me his shoes in the mornings and even tries to put them on himself. He also like to try to help mommy with brushing his unruly hair. He loves warm baths and as far as eating we have NO trouble in that department. He recently started walking, and we can't slow this little man down- he's like the energizer bunny that never stops! He is constantly getting into everything, he loves unraveling the toilet paper in the bathroom, and we can always make him giggle even when he is in the middle of crying. His best friend is our furry boxer Chloe, I couldn't ask for more. Everyday I am blessed. There isn't a day that goes by that I don't THANK GOD for these miracles. I don't know how I got so lucky as a wife and mother. Tonight we are going to attend our friends super bowl party-  oddly enough, this was the FIRST event we attended with Liam after everything happened last year. He slept through most of it, and everyone was happy to meet him finally. What a difference a year makes.

Crying it out

I know this is a topic of debate in the world of parenting right now. I have to say it does have its place, and when I use this technique there are solid boundaries so that it is not taken to an extreme. I am very particular about how I raise my child, given that my mom was ill and passed when I was young, and my dad did the best he could...I spent a lot of time with grandparents, however they have all passed as well. I don't have many traditions, songs, memories, or stories passed down to me about bedtime routines or any other parenting technique...so I have decided to come up with my own and this is one reason for this blog! There is ALOT of information out there about the "best" way to raise your child, it is so easy to get lost in it all, the articles and research and the endless opinions of others that are presented as fact when they obviously are not.... First, any momma out there that can listen to your baby wail and keep a straight face- KUDOS to you! I envy you! This technique has been useful as our young toddler LOVES to stay awake until past 11pm if we let him, the exhaustion sure takes a toll on all of us the following days and weeks. SO, in order to keep him on a schedule we need to let him cry it out if our other normal bedtime routines do not work. I will tell you, two minutes of hearing him cry and I am practically a caged animal, my bones ache, and it seems nothing could stop me from sprinting to my baby and scooping him up...and then I hear my wonderful husband remind me in a calm tone, "he is fine, let it go another minute." These words sound barbaric to me, but somewhere in the back of my mind I remember that he is right....and usually within the next few moments (which feel like hours) our little bundle is out cold. This technique is not full proof, it doesn't always work, which was the case last night for us. This is why it is so important to have solid boundaries, a point at which you tell yourself, this is not working my baby needs me, and I need to try something else. Last night, our babe was happy to cuddle with daddy and fall asleep on his shoulder. As much as I want to encourage Liam to fall asleep in his crib, I know that our little guy is going through a whirlwind of transition right now...between being transitioned into the toddler room at daycare, having at least 5 teeth on the way in, the switchover from formula to milk, as well as him being more aware in general of the world around him it makes complete sense that sometimes he just needs to be coddled to know that everything is still alright. He slept well until about 3am, and then ended up in bed with us. Not sure exactly what was going on with him last night, but he was happy to sleep in between us and we were all happy to get some rest. I am hoping the rest of the week goes better. Until then, here's to hoping you all got a great night of sleep!

Follow ups, Milestones, and our first year as a family

I have not been looking forward to writing this blog. The truth is, that although I could not be more grateful that our little man has done so well, that there is a portion of me that dreads all of the doctors appointments, and the way we simply obsess over everything our child does...

 Follow ups. Well, let's just say there were more than I could count. In the beginning, Liam was still on Phenobarbital which required blood work at times, I was still attempting to nurse, and Liam had some other routine tests done, this was all on top of the peds appts, neurology/EEG's, and NICU follow ups. I think I went back to see the lactation specialist maybe three times the first month. I begged and willed my body to do just ONE thing right..unfortunately in the end, it just wasn't the right decision for me and little man... Then we discovered he had a tough case of torticollis. If your not familiar, this is a condition newborns are sometimes diagnosed with where they have trouble moving their neck due to the cramped space they were in for 9 months! Usually it takes some physical therapy and it resolves...Thus began our weekly physical therapy meetings which have now become routine even after all issues have resolved, just to monitor Liam's progress. As time went on, things got easier in the sense that we got used to the chaos. Once I started back to work things got even more insane, and my husband and I communicated mostly through text and email, most of our discussions were who was taking Liam to what appointment, and who was able to take time off of work. Luckily, it all worked out. Liam's appointments all were going great! Liam's EEG results were normal at 3 months and he was taken off the seizure medication- this was HUGE for us, we celebrated!  We are also so incredibly proud to say that he met most of his milestones AHEAD of time. Many times when Liam would see a doctor that wasn't familiar to him would be astounded by looking at him after reviewing his history, they could not believe how well he was doing = Our little warrior. <3

Besides the chaos involved with all of the follow ups, Liam saw his primary doctor every few weeks or even more frequent due to frequent colds and ear infections, we ended up in the ER roughly 4 times due to Liam having trouble breathing, or high fevers. When Liam was 11 months old he had Eustachian tubes placed, and was also diagnosed with asthma shortly after. Once the tubes were successfully placed and Liam was on the correct asthma medication, things actually slowed down for us, for a moment anyway....this month his cycle of follows ups start up again so we will be busy! I am looking very much forward to spending valentines day with the guy who owns my heart!

Overall, I am happy to say that for the most part we have been absolutely beyond blessed to spend the majority of our time ....like any other parents. We waited for all the milestones, they came and we would celebrate and Thank God. We dealt with teething, sleepless nights, separation anxiety and all of the other things parents experience, and through it all we couldn't be happier! We recently celebrated Liam's first birthday, it was a huge celebration and a great time- I thought the superhero theme was appropriate!

The Lauren's Hope Foundation

This is such an emotional post I am not even sure where to begin. I suppose this article will help http://articles.mcall.com/2013-02-16/health/mc-baby-brain-lauren-hope-foundation-20130216_1_cerebral-palsy-healthy-baby-brain-injury

The first time I had heard anything about the Lauren's Hope Foundation, I was staring at my baby boy for one of the first times, and I was completely consumed with mother love. Everything that was being told to me was getting filed away with all of the other "unbelievables" of the week...it wasn't until later that I actually put all of the pieces together. When it finally hit me that my son was the first baby to have this therapy, I couldn't believe it. Everyone from the NICU was so professional, reassuring, and comforting. Even as a nurse I could not detect one ounce of uncertainty in how this treatment was carried out, and I quickly realized that they had been studying, training, and preparing for this so carefully, and were just as excited as we were to see Liam thrive. The bonds we made with the NICU staff was unforgettable, and we will always share that special connection. What is even more phenomenal is that this program should have taken over 5 years to put into place, and with the dedication of Ann Flood and Lorraine Dickey, this program was ready in just over 2 years - right in time for Liam. The unbelievable part here is that if the program was not in place at LVH, Liam would have needed to get transported to Philadelphia for the treatment, and there is a good chance that he would have missed the 6 hour window to initiate treatment. After it all sank in, I realized that although Liam's journey had been rough and I may never understand why, it was the one he was meant to travel.

During our stay at the NICU, it just so happened that Ann and Dan Flood were there getting pictures during the hanging of the plaque in the lobby, and we just so happened to be heading to the cafeteria and we got to Meet them! I will still in a wheelchair at that point, as there was no way I could walk the distance to the cafeteria. The first time I met Ann, I felt so... insignificant. I was steal dealing with a lot of different emotions from the delivery, including guilt.  But in the few moments of talking to Ann for the first time, I realized this woman was not only stronger than anyone I had ever met, but her inspiration, and determination literally beamed out of her eyes. This woman had a heart made of pure love, and she instantly lifted my spirit. That day, Ann got to meet Liam for the first time. This was special, since most of our family had not even had this opportunity yet. I felt so honored in that moment, when she looked at my son and together we acknowledged that her pain, love, and determination had finally paid off. I know in my heart nothing could ever take away the pain from losing her precious angel, but I felt in some small way that this bittersweet moment made her heart sing!

Since that first day, we have participated in many foundation events, including the Butterfly Ball, Lauren's Hope 5K, annual golf outing, and "wings for hope." We have enjoyed sharing the joy of our little miracle with all those involved, as we are so grateful for all of their efforts!

Here is a clip from Lehigh Valley's annual report, featuring the Lauren's Hope Foundation and Liam!

http://www.youtube.com/watch?v=WGRFwAubI_I

Another article about this amazing foundation!

http://www.mdnews.com/news/2012_03/05782_marapr2012_laurenshope.aspx

And Finally here is the Foundation's website!

http://www.laurenshopefoundation.com/

Therapeutic Hypothermia, aka head cooling for brain injuries in newborns

"Hypoxic brain injury is caused by lack of oxygen in a baby's brain during labor and/or delivery. It can lead to death or permanent brain damage. Therapeutic hypothermia (deliberate lowering of the body temperature) aims to cool the brain soon after birth and for several days afterwards to prevent secondary brain damage. It is done by cooling either the baby's head with a purpose-made cap, or the whole body with a purpose-made blanket or mattress.  The baby's temperature is measured throughout to ensure that the right amount of cooling is used. After cooling, the baby's temperature is gradually returned to normal."

 SO....Where did this whole entire idea come from? Well, it's actually quite interesting. If you would like to know more about it, here is an awesome article...http://www.theguardian.com/science/blog/2013/dec/10/life-death-therapeutic-hypothermia-anna-bagenholm

So your next question might be...how did this breakthrough treatment come to the Lehigh Valley Hospital? Read onto the next blog post about the Lauren's Hope Foundation to find out!!!!

So basically our son was born with an anoxic brain injury due to a loss of oxygen, also known as Hypoxic Ischemic Encephalopathy. I had never heard of this treatment before... All I could hope was for the best. Here are a few key points and links to article see below to further explain technically what this treatment is all about.

1. "Cooling was safe and did not result in serious side-effects." ...and all I remember is being told in recovery that this treatment COULD help, but it definitely won't hurt" I remember I quickly started shaking my head yes to the doctor as if saying, "Go Go Go!"

2. "Cooling did not have any effect on seizures within the first 3 days of life." (basically what this means is that although during the treatment you may notice your child experiencing what appears to be a seizure...which did happen to us, it does NOT mean that the treatment is not effective, good information to have but not something anyone will come out and say!)

3. "Although major neurodevelopmental disability as a whole was reduced by cooling, there was no benefit of cooling with regard to separate outcomes of cerebral palsy, neuromotor delay, developmental delay, blindness or sensorineural deafness requiring hearing aids." (what I want to stress here is that even though we were watching our child meet major milestones and thrive, and we were sure he was okay- the doctors still continue to traumatize you repeatedly telling you that your child is still at VERY high risk for all of these things!... you will never hear a doctor tell you your child is going to be OKAY even though you know in your heart you know they will be, it causes you to always second guess yourself, and as a momma, that kills me!)

4. "Until recently there was no effective treatment for HIE; once an infant developed asphyxia, there was no way to stop brain damage or death from occurring."



http://www.lvhn.org/lehighvalleyhealthnews/2013/02/26/hypothermia-treatment-gives-easton-newborn-hope-and-brings-family-peace-of-mind/

http://www.nationwidechildrens.http://apps.who.int/rhl/newborn/cd003311_ballotde_com/en/org/neonatal-therapeutic-hypothermia

NICU stay

Going into the NICU for the first time I was being pushed in a wheelchair by my husband, I felt so many emotions, excitement, fear, happiness, devastation.....enough emotion to literally make me explode. I remember laying my eyes on him for the first time, knowing that he WAS going to make it, although we didn't know at what capacity yet.....our little miracle looked so beautiful, so peaceful....and so...quiet all at the same time. My heart ached in a way I never knew it could when I looked at him in that NICU isolate, I wanted to badly to know what the future would hold for my new family, and I was just so proud of my son.

The first few nights Liam was in the NICU my husband and I stayed on campus at the Hackerman Patz house, which was comfortable like a hotel. The very first night was the most excruciatingly painful night of my life, breathing hurt....I wondered if I would ever be able to stop taking pain medicine. All I wanted was to be able to be healthy and take care of my baby, HOLD my baby, and mostly...nurse my baby. I wanted to do the NORMAL things a mother does for her child, that she is expected to do for her child....everything was so confusing to me still and answers were not to be expected. When I finally did drift off to sleep I remember we got a call in the middle of the night, my husband jumped up and talked to whomever had called him on the phone. My heart raced as the absolute worst scenarios ran through my head, but I couldn't move my body. I will never take for granted the ability to use "core muscles!" A few minutes later I was filled with joy to find that our baby boy was awakening and over breathing his vent and they needed to take him off the ventilator! We rushed to his bedside, and we got to witness our baby boy taking his first breaths off the ventilator, we were so happy but also upset that he didn't really cry. It was explained to us that he might night just yet, as he was on a lot of medication and still quite groggy. Our gorgeous little miracle had taken another huge step in the right direction, what a true warrior. The following day at the NICU my doctor called me to check on my and Liam, his exact words were, "I cannot believe you are doing so well.....there is someone above watching over you....what you went through you really could have gotten very sick after such an emergent surgery." It was all so surreal, I couldn't even begin to ask myself, how, why ?? By this point in time I had found out that the head cooling machine my son had been placed on was JUST dedicated at some point within the last 24 hours before his birth. At this time I am just going to quickly mention the fact that the equipment that made this treatment possible was DONATED by a foundation, a foundation with an AMAZING story. The story of Lauren's Hope, there will be an entire post dedicated to this at some other time but for now that's all I will write......as hard as it was to accept at the time, I knew Our story was playing out exactly the way God had planned.... going through all this and staying sane required me to put ALOT of FAITH in GOD. As a mom such an unexplainable traumatic delivery caused anger to rage in my heart and soul....but I KNEW I had to put these emotions aside at this time and trust that whatever His plan was.....would work out the way it was supposed to......


For the whole story of our NICU stay, please visit our carepage site via the LVH http://www.carepages.com/carepages/LiamDavidNagy

Pictures from the events on 1/9/13