What a difference in a year!!

It is defiantly interesting to see what a difference a year can make in a person’s life.

Here is a picture from February 14, 2013.

 It was taken the day after what is quite possibly the worst day of my life. At the time Nate had been in the hospital almost two weeks and had been recovering from his pneumonia and there was talk on the 12^th about how he would be moved to a regular room and most likely discharged by the weekend. Well that all changed in the early morning of February 13^th, when I was awoken by yelling and footsteps. I actually thought something was going on in the room next door and I remember thinking the nurses needed to get out of my room and go there. It was around 5am and it took me a few minutes to realize that the alarms were actually going off in our room and I was trying to process what was going on. Luckily a nurse who we were very familiar with came and sat by me and told me that for some reason the high flow oxygen was not working for Nate and that they were trying to bag him to get him to start breathing again. I distinctly remember asking her, if I needed to call Chris and tell him to come and her saying No I think were ok. Well 10 mins later his oxygen was back up and his heart rate was steady so I stepped into the hall to call Chris to let him know what happened. By the time I called him, the code alarms were going off and the nurse told me to tell Chris to get to the hospital ASAP. I walked into the room as the fellow looked at me and said we have no other option but to intubate him to try to save him and I was like ok then do it stop talking. Long story short, that intubation eventually lead Nathan to getting his trach about 6 weeks later when we had run out of other options. It’s funny looking back at the picture, because at the time I was very reserved about sharing photos of him looking so sick because I was concerned how others would feel. Now when I look at those photos all I can think is wow, God is Good and my son truly is a miracle! My perspective has defiantly changed this year and where last year at this time we were honestly looking into the logistics of how we would bury our son (who remember at the time, was technically still our foster son) to this year where we are awaiting the birth of our little girl, Amelia. I’ve told many people that God is giving us Amelia at this time of year so that it can be happy time instead of time filled with dreaded memories.

This is a photo taken of Nate yesterday:

It is unbelievable to think of everything he has been through this past year and how far he has come. Sometimes when he is doing so good, I forget that no he is not cured by any means and that he is still suffering from several issues including pulmonary hypertension. Luckily we have an amazing team of specialist that are constantly impressed by him and a group of therapist and nurses that I can’t imagine our life without!

Special Bond with Virtual Friends!

The past couple of weeks have made me really think about friendship and what’s important when forming friendships. Don’t get me wrong I have some awesome friends in my life and I can’t imagine life without them, but I also have formed an incredible bond with a group of ladies that I’ve actually never met in person. These are moms of other special needs kiddos, the majority I’ve meet through a Facebook CHARGE support group. From an outsider, I can imagine your thinking really lady your telling me these ”virtual Facebook friends” really mean that much to you and my answer is yes. I understand your doubt because if I wasn’t writing this I probably would be saying the same thing, but the truth is I don’t want to think how my life would be without them in it. I have really formed a special bond with some of these ladies throughout the past year because they understand firsthand the daily struggles of raising a medically needy child. They understand my excitement when I say Nate brought a toy to his mouth and put it to his lips. Its also a since of relief that Im not the only one feeling guilty that I didn’t get to take Brody to a playdate because Nate had an appointment one day or the struggle to be a good wife when you haven’t stayed in the same bed as your husband for weeks because your trading off on hospital duty. I wouldn’t change my life for a moment but I truly thank God every day for the relationships I have formed.

So the question is what made me bring this up, Heaven recently gained an angel, Connor was a little CHARGER whose mom and I formed a friendship since both boys came home trached and vented the same week. I don’t think his mom will ever know how much support she has given me and really how much she became my “go-to person” for trach advice because we were both experiencing it for the first time. Connor’s passing away was much harder on me than I would have ever imagined, I truly felt as though I was losing a relative. I know Im not the only one who felt that way either, it was amazing to see how the CHARGE community came together and rallied behind this family during their loss. Connors mom compared her CHARGE family to the mafia! Its true we get mad at each others nurses , doctors , and even families when someone harms one of us!

Because I was not with Nate when he spent three months in the NICU, I never was able to meet other moms going through similar situations with their kids. I hear about the bonds made between NICU moms and I feel sad that I wasn’t able to form relations but incredibly blessed that I have been able to meet moms that not only can support me but I can also support them. Hopefully we will be able to attend the CHARGE conference in 2015 and I can stop being a Facebook creeper and finally meet these women in person. The most ironic part of the situation is even Chris and my mom are at the point that they are starting to be able to figure out whose kids is who and who is in the hospital because I will bring up milestones kids are facing etc.

I recently starting talking to another mom ( a  friend of a real friend) and we were discussing this very fact, that there is just an amazing bond formed between special needs moms, and that she agreed that sometimes she feels closer to them then her “real friends” . I think its because the fact when talking to them I don’t have to filter my emotions or explain medical terminology because they get it.

The moral of this story is I truly value all of my friends whether real or virtual and I can’t imagine how I would’ve made it through the past year without them

The Nathaniel Story

 

 

In my mind, I’ve been writing this post for over a year, but now that I have sat down to write, it seems like an impossible task. It’s hard to be able to put in words “Nate’s Adoption Story” because it has been an almost 2 year adventure filled with lots of ups and downs. To make the challenge harder, is the fact that some people know a lot about  our journey to make him officially ours while others didn’t even know we had another son. So please bear with me, as I try to describe his story. (Some parts I have shortened, but we would love to share more, so just ask.

In October 2011, Chris and I decided to embark on the journey of becoming foster parents with the ultimate goal of adoption. I have always felt God’s calling to adopt a child and Chris felt like fostering to adopt is what God had in his plan for our family. After becoming certified through the Bair Foundation, a Christian foster care agency, we received a call in March of 2012 asking if we would foster a little boy who was about to be released from a 3 month stay in the NICU. We were told he was a premature baby and had been born addicted to PCP and had a multitude of health issues. We were told by Bair that they needed us simply to keep him until they could find a medically trained foster family.  After agreeing to it, we were given the opportunity to visit and were immediately thrust into the medical world of feeding tubes and apnea monitors. We’ve been asked WHY more times then I even want to count, and there are plenty of reasons on Why we agreed  to even take him in the first place, and the simple reason for us is we felt God calling us  to give this little boy a chance. It was heartbreaking to me as a mom of a then 10 month old to think of this sweet boy who laid alone in the NICU and had no one fighting for him. Hence why he has become known as “our little fighter” because honestly according to science, he should not have survived the 2 mile ambulance ride at birth. (I forgot to mention you may need tissues for this story, I know as I sit here writing it, the tears are coming down my face).

The next few months were filled with doctors’ appointments, therapy, and Chris and I truly learning about the court system and the Children’s Youth and Family Services department. During this time, we were truly thrust into an unknown world of heart conditions, genetic abnormalities, and developmental delays. It was in July 2012, I came to the realization that I was no longer just an advocate and caregiver for Nate, but I was now fighting for what was right for my child. Although I fell in love with him from the moment I first held him, it was not until July that I realized I was going to do everything in my power to make him officially my son. At this time, Chris and I had already been to two court appearances where his biological parents were still fighting to get him back.

Fast forward to December which included over 50 days in the hospital for surgeries and numerous episodes of aspirated pneumonia, we celebrated Nate’s first birthday and “First REAL Christmas”. December was quite a busy month of celebrations and we ended the year in Florida for two weeks. My parents and I took the boys to Ft Myers and we had a nice time relaxing, of course we had no idea what would happen when we came home from vacation.

In January we took him to the emergency room where he spent a few days being treated for another episode of pneumonia. A few nights after he was discharged, Chris and I noticed something wasn’t quite right with Nate and we ended up calling 911. (Most people are surprised to find out that this was the first time in over 10 months, since we had Nate that we called an ambulance and didn’t drive him to the hospital ourselves. It was a good choice that we called paramedics, because by the time they arrived Nate was bluish grey and not responding even on very increased oxygen.

We spent the next three months in the hospital where Chris and I dealt with a parent’s worst night mare. (I won’t go into all the details about what happened because we could fill a novel with what happened during that time, so I will give a VERY abridged version). Basically Nathan got infection after infection and was intubated that entire time except for approxmently 24 hours. The biggest thing we found out was that his lungs were actually not as healthy as everyone had always thought and that he needed the support of mechanical ventilation to survive. For those of you who are new to the story I will tell you that there was a time in February that Chris and I had to begin to think about funeral arrangements. As hard as it is for me to think about, the really cool part is that once again Nathan is living proof that God is in charge and not doctors. We were incredibly blessed to have an ICU staff that did not give up on him even when we had lost hope. This situation also taught me what an incredible husband I have who never lost faith in God. Once we were able to get him “stable” we had the responsibility of making one of the hardest decisions I have ever made. After talking to the medical staff, we were told a tracheotomy was our last resort. (Rember at this point, although we had medical rights, we had no other rights as a parent, because the biological parents were still his parents, basically it was an incredibly sucky situation)

In April 2013, Allegheny County courts terminated parental rights and Nathan was now a ward of the state and was free to be adopted. Of course nothing is that easy, because his biological dad decided to appeal to the Pennsylvania Superior Court.  We were literally in limbo because although he had appealed he was not allowed visitation and was allowed ZERO info about Nate, basically it was a waiting game.

During the month of April, Nathan was finally discharged to come home with us, but due to his new medical needs, Chris and I decided to move our family in with my parents for the extra help. It has been amazing to see Nathan thrive over the past few months, he is now even crawling!!! We have an amazing group of therapist and nurses who work and challenge him every day. Looking back I am certain this story would have had a different ending had he not undergone the trach surgery.

In September we took the boys to Disney World and to say we had an incredible time, would be an understatement. It was amazing to see how much fun the boys had, I think the tea cups were both’s favorite ride. We are already planning on when we go back because everyone was so great with Nate there.

On October 8, we received the awaited news that the superior court upheld the decision and that we could finally adopt Nate as long as bio dad didn’t try to take it to Supreme Court. (Luckily for us all he would have had to pay for his own attorney which wasn’t goanna happen since he has no jobJ) On November 9, it was determined that we would be able to finally adopt our son on National Adoption Day on November 23, 2013.

It has been an incredible journey and there has been numerous times that I doubted God that it was really his plan for  us to be Nathan’s parents but we are so beyond thrilled and so excited to finally introduce the world to our son Nathaniel!!!!

I cannot end this story without saying thank you to our incredible family, friends, and medical staff who have supported us these past two years. We could not have made it to this day without your love and support. I’m not even going to try to name names, but I hope that you each know what a special part of my heart that you have and that I know Nathan would not have made it without his guardian angels.

 

9 months...better late than Never!

  Well since my little guy has already turned 10 months I figured I'd better post this!

Brody-

9 months old which means you have officially spent more time on the outside than inside my belly! I know I say this every month but I truly can’t believe how fast it has gone!

We had to lower your mattress in the crib because we looked in on the monitor one night and saw you standing up trying to get out! Speaking of looking in on you, I am happy to report you are now sleeping through the night with no middle of the night feeding! Daddy and I are so proud and grateful for a full night’s sleep!

You spent an entire weekend with your daddy because I went out of town for Aunt Jen’s bachelorette party. I was so worried about leaving you for two nights because you refuse to drink from a bottle! Daddy was able to finally get you to drink after I had been gone 24 hours. I missed you so much but luckily I got to talk to you over skype! Leaving you was much much harder than I expected it to be! Before I was a mom I never would’ve thought Id be so sad being gone three days. When I got off my plane, you were holding a sign that  said “mom” and Im not going to lie I cried! I think you , daddy and Sam had lots of fun cuddling in bed while I was gone.

You love to scooch and finally began actually crawling but you would much rather scooch!

I love you so much, Mommy

Growing Family!

For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in. Matthew 25:35

Our family is expanding and we are excited to finally be sharing the news with everyone. First things, first, I am NOT pregnant! Now that I’ve cleared that up, let me explain.

           Chris and I are in the process of  completing our certification to become foster parents. Our ultimate goal is to foster to adopt which simply means adopting a child that is placed in our home for foster care.

It has never been a question of whether or not I wanted to adopt a child it has been a question of when. While we dated I discussed with Chris that I have always felt God leading me to adopt children and to have my own children if possible. Chris has always expresses that he felt God wanted him to be a father of four children. The thought of four kids seemed exciting when he told me.

Honestly I had never thought about fostering because the fear of them leaving our family scared me and I would be lying if I said I still am not extremely worried about it.  Recently I heard the  song, “All of Me” by Matt Hammitt on KLOVE radio and I really have made it my anthem for being a foster mom and to help deal with my fear of the child leaving. With that being said a few months ago Chris and I began to talk about starting the process of adoption and it seemed everyone we talked to keep encouraging us to be foster parents. I finally thought to myself God is trying to make this pretty clear so I asked Chris what he thought. He was absolutely for it as soon as I mentioned it and after discussion and prayer it really did seem like God’s plan. Our goal is to be able to show a child as much love and make their life as best as it can be for the time they’re with us. We cannot wait to welcome another child into our family and see if Brody is going to be a “Big Bubby” or a “Little Bubby” aka brother.

The last step to certification is our home study which is scheduled for next week!

Inspriring Faith

Yesterday I shared how my heart was breaking for my sweet friends baby Thatcher. I recieved so much support from my friends and I wanted to now share with you guys whats going on with Thatcher. Whitney (Thatcher's mommy) and I grew up living across the street from eachother. Whitney, Robin (her sister) and I spent every day together and were basically sisters. They moved to the Woodlands when I was around 10 but we still tried to stay in touch. Thatcher's grandpa even married Chris and I.

Below is a note taken from Whitney's facebook acount. I wanted to share it with you guys becuase her faith thru this is beyond inspiring. Her husband Eric and and her really are seeing the bigger picture of God's glory. Please just continue to lift this family up in prayer!

Hi friends,There's a lot to share so I thought a note would work best. We went to my obgyn this morning for Thatcher's 36 wk visit, and 3rd trimester ultrasound. On the ultrasound he measured a little small at 4.11 lbs so my doctor decided to do a non-stress test to make sure his hear rate was good and was reacting normal with movements. Thatcher failed that test, so we were sent to the hospital to try again and to get a biophysical profile (an ultrasound where they test his amniotic fluid, his movement, his lung/diaphragm movement, and placenta.) He failed the nst again and on the bpp the radiologist found swelling in both ventricles of Thatchers brain caused by an old brain bleed that had gone unnoticed. We were sent downtown for further testing and for an MRI to see what brain damage were looking at. Since arriving downtown Thatcher has PASSED a non-stress test, weighed in at 5.4 lbs and has more fluid around him! So MRI has been postponed and another bpp has been scheduled for 8 am tomorrow. They claim the drs in the woodlands may have misread the original nsts and the bpp and they are reassured with the way thatcher is responding. We know these positive results are the outcome of God's healing power from our friends and family praying on our behalf! We are now asking all of you to join us in boldly asking God to completely heal Thatcher and stump the specialists who are coming to do an ultrasound at 8am tomorrow! Thank you for praying with us for our sweet baby Thatcher!!!

Update from today (2/14) after the MRI:

We got the results from the MRI this evening, the doctors have basically given up on Thatcher, they said that the MRI revealed that there is significant atrophy to thatchers brain in both the upper and lower parts, they do not know how long he will live once he comes and they don't know that he will even make it to delivery. They have told us to enjoy what time we have with him and prepare as best we can... We have not given up. We know Thatcher is God's child, he is still here and he is still alive and we will continue to pray boldly for healing fully knowing that God is bigger than anything, any ailment or disease or sickness. Thatcher is still kicking and we rejoice in every move that he makes, we will fiercely love this child no matter what Gods will is for him. Thank you so much for your prayers and support this far, please continue to pray for healing.

We love you all and are so thankful and humbled by your prayers. Facebook and text messages are fine but please allow us some time to wrap our minds around everything we've learned today.

Update from 2/15 after Pediatric Neurologist consult:

The majority of today was a waiting game.  This morning we met with the maternal fetal medicine surgeon (the same doctor who brought us the MRI results last night) to make sure we understood what information was given last night and to answer any questions we had.  There weren't any new developments, or a change to his prognosis.  The positives out of the meeting were he admitted it's his job to give us a worst case scenario picture, and Thatcher not making it to delivery or only living a few hours is our worst case scenario.  Also, he agreed with us that Thatcher's movements and his "breathing practice" were good signs of some basic functions.  This afternoon we met with the pediatric neurologist who essentially had the same diagnosis, major atrophy to Thatcher's gray and white brain tissue resulting in hydrocephalus exvacuo (enlarged ventricles) but a much improved prognosis.  She couldn't give us a life expectancy, put a cap as to how long he might live.  She did say he will be in an infantile state for the duration of his life.  He will struggle with mental retardation, seizures, movement ability and control, ability to chew, to go the restroom, to sit, to walk among many other challenges.  BUT that's not what today was about, the things Thatcher won't be able to do.  Today was full of peace, of a renewal of our spirits, revelations of God's goodness, and full of evidence of God's miracles both big and small.  We have prayed from the beginning of this pregnancy that God would use Thatcher in a big way to bring glory to His name.  Today, God used Thatcher to bring people together from all over the US to The Netherlands, Africa, China, Greece, and Australia to look to Him in prayer.  A baby who they've told us will not develop past infancy has done more for the Kingdom of God before he is even born than his two parents have ever done!  Praise God! We are more convinced than ever that He is using our child to bring glory to His name and will continue to do so in a big way.  We are continuing to trust in Him, our Creator and Perfecter of life.  We know He can heal and we believe He will heal His child, our sweet baby Thatcher. Thank you all for your prayers, stories of healing, and encouraging words.  We are so humbled and blessed by the out-pouring of love from our brothers and sisters in Christ Jesus.  We only ask that you continue to go to God with expectancy of Him healing sweet Thatcher in accordance to His will.

Why?

Philippians 4:6-7 do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

First off , for those of you who read my blog regurly I want to warn you that this posting is not a cute story of the latest adventures of Brody.

I recently found out some heartbreaking news about a childhood friend’s unborn baby, Thatcher. I can’t imagine being in her place because I am having a really hard time digesting this news. I thought maybe if I just wrote down my feelings it would help. With that being said, this situation has nothing, I mean absolutely nothing to do with me, and all thoughts  and emotions should be about that sweet little baby boy.

This situation really has me just wanting to ask God WHY? Why would  you let this happen to baby? Why would you do this to these sweet parents? And basically just Why? Thankfully I have a husband whose trust in God’s will is unwavering and I really do rely on his strength in situations like this. I know that God has a plan for everything including  his son, Thatcher, and I just need to trust and stop asking why. Questioning God isn’t doing anything but making me upset and prayer would be a much better use of my energy.

So please, please, pray for this sweet family and their baby Thatcher. Surround that little boy with all your love and thoughts. I don’t care what religion you are , please please just ask for a healing miracle for Thatcher.