10 months big!

 July 12 & 13: We had a normal weekend, nothing fancy, relaxing and being a family! Beau enjoyed a nice evening walk in his bear jammies.

 Comfy spot                                                            Cozy bear  (July 12)

This smile :) :) :) :) :) July 13

July 14: Monday Beau had an appointment in Audiology.  Well unfortunately he didn't pass his hearing screening on his left side so we will have to have a referral put in for a sedated Auditory Brain Response (ABR) test this fall. The doctor said both of his middle ears were working but they did not detect the hair follicles reacting to sound on the left side.  Oh the amazing things technology can do these days?!

I think I spent most of Monday and Tuesday getting ready and packing for our 2.5 week vacation to Minnesota... oh the joys of packing for a child!  Not only did I have no idea how many outfits to bring, I also had to pack any possible medical supply that he may need!

Tummy Time!!!!

July 15:  Beau is 10 months big! He is almost 22 pounds.  He is practicing sitting up but definitely still needs support and looses balance quickly.  He is so happy and only cries when he's tired.  He is still fully g-tube fed and is still having reflux related issued/retching up his milk through his Nissen. :( We have decided to take a break from anything oral (milk or purees) until we can figure out the problem.  We have seen him pass a rattle between his hands (another milestone!) and he is now rolling over front to back and back to front though not in the same direction to move across the floor. He is still sleeping great - goes to bed between 8-9 and wakes up after 6am.

 When I lay him down and stand over him, he goes crazy with excitement!!  These faces kill me!

Oh how I love continuous shots :)

One Year Later.... July 11, 2014

One year ago today Andrew and I sat in the doctor's office in Maternal Fetal Medicine, only to find out our growing baby boy had a heart defect. :(  I will never forget her showing us pictures of the holes between his top two atrium and bottom two ventricles.  I will never forget the moment she said there was a 50% chance of Beau having a chromosomal anomaly... most commonly Down Syndrome..  I listened to her while holding back tears and I remember saying to myself,  "hold it together, hold it together"  because that's who I am, they didn't need to see my emotions.  Then Andrew began to ask questions - What does this mean?  When will he need surgery? What will it be like when he's born?  And then he lost it.  I lost it.  She had no answers for us. Tears were flowing down our faces and the medical staff gently exited the room to give us time. By the time we got to our car we were sobbing.... then we pulled it together and began making phone calls. Though you all didn't know for several weeks, we had known about Beau's suspected diagnosis long before we spoke to the "world" about it. We wanted time for a true confirmation [which came in late July after the NIPT test], time to research and be ready to answer questions, time to calm our hearts, and time to put Beau IN HIS HANDS...

From there you know the rest of the story: finding out about his other heart defect, traveling to CHOP, Beau's early delivery, the hospital, heart surgery, respiratory distress/intubation, g-tube surgery and so on...

Andrew and I didn't respond with the typical scared or sad feelings about Beau's Down syndrome diagnosis, though there were many days of wondering what Beau would look like or how he will develop.  We were excited to join this new family, excited for Buddy Walks and Special Olympics, excited for the lifetime of unhindered JOY we knew Beau would bring us. Of course, there are days that I admit I get a little jealous when I see other babies younger then Beau accomplishing things he can't yet do. But I know that Beau is BEAUtiful and EXTRAordinary, created in God's image.  He will grow and reach milestones on his own timeline and we will celebrate every one along the way!

My focus throughout this last year was prayer... prayers of trust to the Lord to protect Beau as he grew during pregnancy. Prayers for the Lord's healing over his little body in the NICU. Prayers of endurance when I no longer wanted to drive to and from the hospital everyday. Prayers for his heart to sustain him leading up to surgery. Prayers for the medical staff, surgical teams and nurses who watched over him.  Prayers of patience and understanding when mistakes were made. Prayers for us to handle the stress of the hospital and prayers to stay strong as a couple during the challenging days. Prayers to keep smiling and do it again tomorrow. And prayers of thanksgiving for you, those who have supported us and prayed for Beau along the way.

Beau will be 10 months old next Tuesday and never did we imagine he would spend a total of 147 sleeps in a hospital. Never did we imagine we'd have to watch what our little one endured in his first 7 months of life. Never did we imagine how his incredible, contagious smile would wipe all that pain away. And the giggle... oh my! Never did I imagine the JOY I feel watching Beau light up when Andrew gets home from work and sees his daddy.  Never did I imagine that the greatest trial in our life would be our biggest blessing.

Through it all, God has walked before us on this journey into the unknown we call parenthood. People always say, "I don't know how you do it."  And I reply, "I don't either!"  But I do it because we know no different and this is the plan God has laid before us. Only with strength found in Him did we get through. Time and time again when my worry would get the best of me, Andrew had to remind me that Beau belongs to God.  Since the beginning we have prayed that Beau's story would bring Him glory. God imagined him, created him, planned him perfectly...He makes no mistakes... He brings good from the bad...He restores... He heals... He strengthens... He comforts... He protects... He provides... oh, He is GOOD! We know in this life, challenges happen. God didn't promise that a life following Him would be easy, trials and dark seasons will come.  But we know the ONE who promised us in Joshua 1.9 to be with us in whatever we face... walk with us, guide us... one day at a time, one hour at a time, one step at a time.

We have so much to be thankful for.  We are blessed.

Be strong and courageous. 

Do not be afraid.  

Do not be discouraged.  

For the LORD your God will be with you wherever you go.  

Joshua 1.9

Celebrations! July 1-10, 2014

We had our first week in a long time without a doctor's appointment!!!  It felt good to not have to be at the hospital (though I had to make a pharmacy visit at the clinic near home)! You might think we're crazy for celebrating this but it's few and far between that we don't have to go there!  Two of my girlfriends and I text each other and ask, "Are you here today?" like it's our second home!! We laugh about it but really... Our babes have spent tooo much time there! :)

July 1, 2014 - Marisa has bible study on Tuesday nights and Andrew has a standing "date" with his buddy Billy.  Well it happened to fall on the night when the USA was playing [what ended up being] their final game in the World Cup so I skipped study... I know I know.... with intentions to go once the game was over but I ended up with a debilitating headache and put Beau and myself to bed at 7pm instead.

July 2, 2014 - We had a play date with our friends Isaac and Laura.  

We always love their company and try to see them once a week.

July 3, 2014 - We had PT today and Beau has been working hard on rolling.  He can now get back to front and front to back.  However, occasionally he gets stuck on his tummy and cries for help, and yes, it happens in the middle of the night!! He is being stubborn as ever to put pressure on straight arms so I make him practice as much as he'll allow. Here is beau working for his PT. We took a few moment to enjoy sunshine until the heat and ants got the best of us!!

July 4, 2014 Happy Birthday America!!  A hurricane rolled past the coast last night and all of the fireworks shows were canceled until tomorrow night. By noon is was gorgeous and 80 so we ended up at a BBQ with some friends from church. 

        

July 5, 2014 - Andrew and I celebrated 6 years of marriage!  We enjoyed a nice dinner out and then met up with Jilayna, Beau, and some church friends to watch some fireworks! Beau did awesome staring up at the sky and no tears with the loud booms!!

July 6

 July 7 - We met with Beau's new friend Heartly today. We know her family through a mutual friend and had wanted to get together with them for a while; we finally made it happen! Heartly was also born with Down syndrome and Tetrology of Fallot, one of the same heart defects as Beau. It was so fun to share our stories.  Today for the first time, Beau passed his rattle from one hand to the other!! 

July 8

 

 July 9 - We had OT today and made a decision to take a step back from feeding Beau anything by mouth.  He has been retching and refluxing up his 3 daily feeds almost every time.  Our pediatrician recommended stretching his feeds out over an hour again as he was tolerating those previously. Feeding pureed foods typically triggers it as well so we're just going to take a step back as we do not want to create a food aversion.  We will just have to focus on oral stimulation (mouth play) with textured objects.

Beau got his new stroller and he's ready to travel to Minnesota next Wednesday!

July 10 - Beau's NICU nurse Leah came to visit him today.  

He is much bigger than the 3lb 9oz baby she took care of back on September!!  

Keeping Busy

June 19 - Beau is putting more and more pressure on his arms. 

 It is one focus of his physical therapy along with trunk control/balance in order to be able to sit up someday!

June 20 - We took Beau to the pool for the first time today!  He did so well in the water which I expected since he does well in the bath.  He got to lounge in his floaty and I caught him trying to lick the water a few times! Daddy and Auntie J came to the pool with us - though daddy stayed behind the camera.

 June 21 - We had a First Day of Summer BBQ at our church this afternoon. 

Then we had dinner at the Hershberger's house and the boys got to play!

Beau also celebrated a milestone today - he rolled over from his back to his belly two times!  Though I didn't see it happen, I know it did because I left him on his back and returned minutes later to find him on his belly!  He'd been rolling to both of his sides so I knew it was just a matter of time!  Now I can anxiously watch to see it happen in front of my own eyes!! 

 June 22 - Andrew has been faithfully watching the World Cup and since the US played today, 

Beau needed to sport a lil bit of pride!

June 23 - After two weeks of carrots we made the switch to apples!  Beau seems to like them a little better and he is getting more used to the spoon. We have been playing with it as a toy on the carpet too and that has seemed to help him "warm" to it! We are in kind of a dilemma with feeding because he has a major aversion to the bottle/milk.... and it triggers retching and sometimes a vomiting episode that we'd rather avoid.  After talking to the pediatric surgeon last week when we switched out his gtube, he said some kids will just skip the bottle stage and go to solid foods and sippy cups... hmmmmm... that might be an idea I like!

 June 24 - Oh I can't get enough of these smiles!  He is now smiling back to us smiling at him! It has taken a while where he would smile when we played with him.  Now, I can just give him a big smile and he gives one in return!  SO FUN!  It's the little things right?

June 25

June 26 - We went to the urology doctor today.  We had to get a consult for Beau's next surgery to correct his hypospadius and get him circumcised. I'm not going to go into major detail here (feel free to google it!) but because it is an elective surgery, the doctor wants him off oxygen before the procedure as he'll need to be under anesthesia and on a ventilator. We have tentatively planned the procedure for the end of September or early October. Right now Beau is at a 1/4L of o2. He is still dropping below 93% oxygen saturation maybe once a night (with a quick self recovery) so we're letting him hold steady there for a few more days.  We figured it best to wean him slow and steady rather then fast and have to go back up on it.  We know he is fine without it when he's awake but it's a pain taking the tubing on and off so we just keep it on all the time.

These photos are fuzzy but he kicks, flaps, and flails his arms and legs like crazy..... it's soooo funny!!

June 27 - We headed back to the doctor today for Beau's infant toddler development appointment.  We met with a developmental pediatrician and the occupational therapist who Beau works with every time he is inpatient at the hospital.  They tested his abilities in 4 different areas. He scored around the 4 month mark in the areas of communication, fine motor, and problem-solving and 3 months for his gross motor skills.  It was awesome to get a baseline of where he is developmentally.  Though we know he is very behind, it is nothing we didn't expect to hear.... we have to remember that he has spent over 5 months laying in a hospital bed and has low muscle tone (grossly hypotonic as the docs say) due to his Down syndrome.  It is going to be a lifelong journey of meeting milestones at a different pace as typical children so we need to embrace his capabilities and celebrate his accomplishments as he meets them!  I recently saw another mom's blog that posted her daughter's milestones and I might do the same so we're continually looking at the positive! I read a quote today that was perfect too: "Parents who have children with special needs are always thankful for progress not perfection."  Since Beau turned 8 months he has just taken off with his skills; it bring us so much JOY and we're thankful for progress! GO BEAU! 

June 28

June 29 - Happy babe after bathtime! This is one of his newest faces :)

June 30 - We did a trial run today with no o2 while he was awake and his stats stayed stable!!  On the downside, he would fall asleep and within minutes his oxygen saturation would drop below the recommended 93%.  So we would just slip the o2 back on his face for his nap.  We keep the dots on his face though because it's a major pain taking them on and off everyday.  So I guess this might give a little light into the theory of Beau having sleep apnea. I plan to consult with his pulmonologist to see what further investigation needs to be done! But I'll say it's simply wonderful having him cord-free during his awake hours, when he's not feeding of course!

Our PT recommended Beau get a SuperSeat because his thighs are getting a bit too chunky for his Bumbo!  Well he doesn't quite love it yet but this photo was tooo funny not to share - he got stuck on the giraffe!!

 

But let all who take refuge in you be glad; 

let them ever sing for joy. 

Spread your protection over them, 

that those who love your name may rejoice in you.  

Psalm 5.11