We Tested Positive for Down Syndrome. Now What?

I've been following the recent hype about controversial prenatal testing for genetic anomalies and I have mixed emotions.  Follow with me on my thought process...

First, read What is Down Syndrome.  My son is 4 months old and has Down syndrome.  I learned something new from this article AND I'm already 8 months into my research (4 months with a prenatal diagnosis and the first 4 months of Luke's life).  The learning will never end for us. 

Next, check this out What is Prenatal Testing? During my pregnancy, I completed the generic and very common quad marker screening and after it came back with "abnormal results", I completed the non invasive, diagnostic Verifi test, coupled with ultrasound imaging.

We tested positive.  Now what?  That's the real question, isn't it.  What do you do with the information you've been given?  If your answer is, "we won't do anything", why take the test in the first place?  I see three potential outcomes: 1.) do nothing 2.) cry a little, accept what will be and then research your butt off to prepare for baby's arrival or 3.) terminate the pregnancy. 

Although the testing has become the center of controversy because some say that the results become a vehicle for attempting to eliminate people with Down syndrome from our world population, to me it can be split into two categories, abortion and/or acceptance. 

• I think the controversy is obviously about abortion.  I've mentioned before that there is this heart wrenching statistic out there that says on a worldwide basis, people who receive a prenatal diagnosis of Down syndrome choose to terminate the pregnancy upwards of 92% of the time.  Read this article to learn more: What Exactly is the Termination Rate for Babies with Down Syndrome?  I can tell you this, after falling in love with baby Luke, I am so sad for families who have chosen this route - they have missed out on a very spiritual and personal growth experience and most of all, they have turned their face to a gift graciously given to them from Above..
• I think the controversy is also about acceptance.  We live in a society that has made great strides with embracing diversity over the past few decades.  The opportunities for individuals with Down syndrome are more abundant than ever before.  I read this article recently and the author has done a nice job of explaining her views: All The Ways You Judge My Son.  Unfortunately, there are and will always be individuals who discrimate aganist those who are different, regardless of if they have Down syndrome, have another disability or even for reasons as obscure as someone not wearing the "right" clothes.  Discrimination isn't about Down syndrome, it's really about a lack of love, kindness and openness inside those who look down upon others.

Although I knew the option existed, I never considered abortion and I am so glad I didn't.  Having the prenatal diagnostic testing was really meaningful for us as it gave me time to emotionally prepare for Luke's arrival and afforded me the opportunity to move through the process of acceptance so that I was prepared to celebrate Luke.  Right or wrong, accepting (and even embracing) his differences, which in turn became our differences was a big part of my pregnancy.  Embracing diversity is a big deal.  Now, I'm excited about living our life with Luke.  I'm looking forward to learning about our second born - his personality, his unique abilities and gifts and the the meaning he brings to our family.  I'm looking forward to educating others about what Down syndrome means to us... raising awareness to the challenges that come along with the diagnosis and sharing how with love and hard work, an individual (and their family) can rise up and overcome the obstacles faced and in the end, how we will live a good and meaningful life. 

Every good and perfect gift is from above. James 1:17

Baby Food Bonanza

Do you know one of those people... one of those people who has an abundance of energy?  One of those people who has a heart of gold and gives more often than she takes?  Someone who is kind and loving and sees the best in others?  Someone you aspire to be more like?  A few of those kind of people come to mind for me, but today I am especially blessed to have Dustin's cousin Angela in my life.  Ang and her husband Chris are givers.... they give and they give and they give until you think there can't be any more left and then they give some more.  Ang serves others more often than not... she helps run a food bank, she opens her home to everyone she knows, she is an EMT, she gives CPR lessons and I'm sure if I thought hard enough I could come up with a 100 more ways she puts others first.  One of the ways she's touched me is that she is there to help when you need it but are too shy to ask for it.  Ang is currently well into her 3rd pregnancy and today we made baby food for the better part of the afternoon for Luke and her baby due early this summer.  She brought the raw ingredients... carrots, sweet potatoes, peas and green beans, her baby food making supplies and experience to our house so we could prepare food for our little piggies.  And prepare food we did!  We froze 21 quart bags of the stuff!  When we were finished, however I found out that Ang never intended to take any of the food home for herself... she had come to spend the day only to offer me help in making Luke's food AND she wouldn't let me pay her for the ingredients she bought for today!  I should also mention that she made Matthew's first few months worth of baby food and gifted that to us as well.  And she and her husband have brought us probably close to 8 or 10 *delicious* meals combined between both of our babies after we've come home from the hospital.  She's also showered us with goodies like homemade blackberry jam, apple pies and canned peaches.  Ang, I don't know how I will ever return the love and kindness you continue to bring into my life, but I want you to know how much I appreciate you!!  You rock!

The Quality Control Angel

I saw this on Facebook a few days ago and since reading it the first time, it's something that I've gone back to and re-read a couple of times.  I don't want to lose it so I'm posting it here for safekeeping! Enjoy!

Here is something I wrote when first we were given our little gift...sweet Nella, who came with an extra chromosome in her pocket, giving her the distinction known as Down syndrome. Three years down the road and a heart stretched more and more, I thank God for her:

“We’ve got an issue here” the quality control angel called out.  
“What’s the problem?” asked God, in a voice that already seemed to calm the concern.  
“It looks like an extra chromosome…one, two…yes, right here, an extra one.”  
Now smiling, God answered, “That’s not a quality concern…it is…a distinction…the Manual addresses it. You’re new on the line, aren’t you?”  
“Why yes…this is my first day,” apologized the angel-- searching through the manual for any reference to this.  
“I’ll talk you through it...there are just a few assembly modifications. First, locate the hug sensors. Do you see the dial?”
“Yes, right here…oh, I think I tickled her.”
“Turn it up.”
“How much?”
“All the way.”
“Done.”
“Now locate the two smile triggers— they are located on either side of that cute little button nose.”
“I found them.”
“Adjust them a little closer to the surface…closer…closer…perfect!”
“Is that it?” asked the obedient angel.
“Almost,” answered God. Now, very gently, open her heart.
That’s it. Measure two…no, make it three extra scoops of love.”
“Will it fit…it’s so tiny?”
“Oh, these little hearts stretch incredibly. It will fit.”
“Done…is that it?”
“One more thing…move her from the random distribution belt to the select premium belt.
These little ones aren’t just given to anyone."
"There…she’s done and ready to go,” announced the angel.
God stepped over, as if to inspect the handiwork of this new angel on the line.
But that wasn’t His intent.
Instead, He picked up this little one and held her close to His heart… holding her for so long the angel became concerned.
“Is she alright? Did I do everything as you instructed?”
Still holding her close, God said, “She’s perfect.
I just find it hard to let these special ones go, for they are Heaven to hold.”
And He gently kissed her cheek and sent her to our hearts.

—written by Rik Cryderman, the proud Poppa of one of these babies of distinction, Nella Cordelia Hampton.  To read more about Nella, check out her Mamma's blog: Kelle Hampton

Me Time

Take some much needed time for me? Yes Please!  

Yesterday morning I took a photography class.  I've had a DSLR camera for a couple years now, but have never taken the time to learn the manual settings.  I've always aspired to become a better photographer, but outside of reading the manual and buying a few "how to" books, which I've somewhat thumbed through... I've never done much else to learn.  Seriously, like I have time to study, play around, critique, tweak and re-learn?  Nope, I've just used the generic automatic settings and have called it good.  I've been half-heartedly looking for classes, but have had a hard time finding anything local.  Finally I found a local photographer offering a small hands-on class and was fortunate to sign up.  We went over basic manual settings yesterday and took the time to get our cameras set up so the settings should just need tweaked based on the variables of our environment - i.e. lighting, subjects, movement, etc.  We also spent time shooting and she critiqued our shots and helped us determine what we might have done differently with the settings.  One of my big take-a ways was that I needed a different lens to get the lower aperture settings I'd been trying for on my own before the class (to get a maximum boekah effect aka the blurry background) and it just so happened that the lens I needed (a 50 mm) to get the type of image I was hoping for was on sale at Best Buy yesterday so following the class, I stopped over and picked one up!  I came home and since Matthew was sleeping, I practiced a little with Luke.  I have a looonnnngggg way to go before I think I'll feed good about my skills, but this is a step in the right direction. I enjoy documenting and archiving our family's memories and photography is a major part of that process.

I took the following non-edited photos with manual settings and using natural light.   Hopefully with practice I'll get better and will be able to share more exciting images in the future!

Settings: f/1.8 SS 1/200 ISO-100

Settings: f/2.0 SS 1/320 ISO-100

Settings: f/2.8 SS 1/400 ISO-200

Settings: f/2.0 SS 1/200 ISO-100

Luke's 4 Month Well Baby Check Up

Luke had his well baby checkup yesterday.  He was 13 pounds, 1 ounce and 24.5 inches long.  He's progressing nicely on the growth chart and for that our doctor seemed pleased (and so was I)!  He got a round of vaccinations and only cried for a few seconds, in fact, he was asleep within 5 minutes of them being over with!  His pediatrician and I talked about a lot of things, including some of the following:

• We've decided to get a second opinion on the timing of his open heart surgery.  We have been very happy with the intellect of our cardiologist at The Clinic and she's explained things to us in a way that makes sense, is logical and we appreciate her conservative nature and ability to educate us while not talking down to us.  That said, since your heart is one of your most important major organs, we feel we owe Luke the due diligence to validate we are on the right track with the decision to hold off on surgery until the little guy is 18 to 24 months old.  We are going to see a cardiologist at Nationwide Children's in Columbus and at the same time are going to attempt to see a highly recommended ENT there as well.  I'm not sure how I feel about the one we're seeing in Cleveland and since this other guy seems to be pretty awesome, we're going to try him out and see if he can give us a better understanding of what's going on with Luke's breathing.
• We talked about our recent visit with the hematologist this week and our decision to monitor his blood counts for a while in an attempt to figure out why his absolute neutrophil count (ANC) is so low.  On the bright side, the hematologist called me last night to share that the CBC that she completed on him on Wednesday came back a little better this week than it was last week.  If you remember, his ANC should be 1500 and it's been 500 a few times and was as low as 300 the day of his heart cath... yesterday it was up to 900... the highest it's ever been.  We will continue to monitor.  In addition, the hematologist suggested there could be some GI issues related to how Luke is absorbing fats and she indicated she had thoughts (although she admitted they might be a stretch) that he could have a pancreatic issue.  The pediatrician and I agreed yesterday to run some additional blood labs and to do a stool sample and if any of them come back abnormal that we'll follow up with gastroenterology.
• In addition, I've noticed recently that Luke has maybe been over-using his right hand lately... he holds his right fist up like Superman and stares and stares and stares at it and also this week one of his physical therapists made a comment about it too.  I remembered when Matthew was smaller and I inquired about when he might declare right or left handedness and the answer was that it shouldn't happen before he's 2 - if so it could indicate a neurological issue.  So I asked again yesterday about Luke.  Our pediatrician indicated that he wanted to talk with one of his neurologists to see if it was something he thought he'd want to see us because of... we are awaiting a response to that issue.  

I guess those are the highlights... our checkup lasted an hour and 45 minutes.  I continue to appreciate the amount of time our doctors give us.. I know they all have lots of patients vying for their time and the attention they give us helps me to feel confident that we're with the right caregivers! I have to end with this... I made the comment to our pediatrician that while we're seeing all of these various specialists it's hard to believe there is anything major "wrong" with Luke because of all the things I wrote about earlier this week... the good color, he's growing, he's happy and cooing, sleeping, etc. and he looked at me and responded with something along the lines of "if he looks like he's thriving, he's probably thriving".  While he didn't say it, I think he was thinking "rest easy mama... slow down and enjoy".  He did make a comment about how sometimes when you see a lot of specialists, in a way you open up a can of worms because sometimes they can get pretty far out in left field, reaching and grasping for rare diagnoses and at that point once the suggestion has been made, you owe yourself the due diligence of validating or ruling out their concerns, which just continues the downward spiral of more appointments.  It can be overwhelming and since we've never done this before and only have the knowledge we've acquired over the last few months, we're still learning.  It makes me think back to when I was a little girl and I could rely on my mom to tell me yes or no to a simple question or when I was a teenager to tell me which dress looked best and on and on.  I wish someone would just tell me what to do and that I could trust them enough to say okay, do it and move on.  It's tough stuff being an adult and it's even tougher now that we have kids.  I hope I will be the kind of mom whose kids have that same kind of confidence that I had (and still have) in my mom. 

We also had a visit from our Help Me Grow coordinator yesterday as well as a physical therapy session AND I stocked up at the grocery store, made a pork roast and mashed potatoes for dinner, did two loads of laundry and even accomplished some much needed cleaning! 

A new diagnosis: Neutropenia

Last week a friend was asking me about the early 90's group Milli Vanilli and mentioned their song Blame It On The Rain. I don't recall hearing the song, although I probably have at some point... Regardless since it was dreary out, I'm blaming everything that I learned today on the rain.

We had a follow up with Luke's ENT this morning and I feel like the appointment was a waste of our time. Luke is still presenting all of the same signs that we've been seeing for months now, sub coastal chest retractions and an audible stridor at various times, usually while he's laying flat and attempting to get comfortable prior to falling asleep. We were initially told he has laryngomalacia and then it was amended to trachealmalacia. Today, I'm not 100% sure what they thought was wrong with him.... I'm pretty sure we are back to him having laryngomalacia, but there is speculation that he could have the sub glottic stenosis that comes along with the trachealmalacia. As long as he is breathing and eating well, they don't appear to be too concerned, but there was talk of completing a brochial scope prior to his open heart surgery to validate the airway will be able to manage the extended sedation.

Following ENT, we travelled across the building to hematology and oncology. This was full of new concepts and vocabulary for me, so hopefully I can recount the discussion accurately. The background - Luke's newborn complete blood count (CBC) showed an elevated number of white blood cells, which apparently can be normal in newborns. When it was re-drawn at the request of our medical genetics doctor in March, a month after Luke had RSV, the CBC showed a decreased white blood cell count and in particular, his absolute neutrophil count (ANC) was right at 500, which was worrisome as it should be around 1500. The deficiency was noted to be moderate, but was justified with his body recovering from him having RSV in early February. When his CBC was redrawn prior to the heart cath last week, the white blood cell count came back low again and specifically the ANC was at 300 this time, which is considered to be severely low. With his white blood cell count this low, he is at a high risk for infection.... In fact, we were told that if he were to contract a fever above 100 degrees that we should take him to the pediatric ER at Fairview Hospital if we weren't able to get in immediately with our pediatrician as they would want to get him started as soon as possible on an IV of antibiotics. The name of the diagnosis is neutropenia. The problem is that we don't know the cause of the low counts. Our hematologist ordered another CBC as well as a few other blood panels today and hopefully they will shed some light on what's going on. If the results from today's test come back low again, we will likely be following up on a weekly or every other week basis with repeated blood draws for up to a few months to attempt to get a trend of the counts. Not to project out too far because there are a lot of what ifs between now and then, but the doctor told me that if the counts continue to stay low for an extended period that she will want to do a bone marrow biopsy to try to learn more about why they are so low.

I've felt a weight on me all day today. I wish we could just enjoy our kids without the emotional chaos a growing list of specialist visits brings to our lives. There is so much to coordinate and schedule and document and learn. It's exhausting. Today I'm tired.

It's so hard to look at Luke and believe there is anything remotely wrong going on inside of his little body (with his heart or with his blood). He is growing, he is alert, he has good color, he is a good sleeper, he is eating well and he has the most wonderful smiles. My heart is telling me to cuddle, enjoy and forget the rest but my mind is constantly reeling with terms I should google and appointments that need scheduled or re-scheduled.

As I share my sadness about our growing list of health concerns, I think about the many many families that have thing worse off than we do and I'm reminded to count my blessings. After our long day today, Luke went to bed early around 8 pm and I was able to spend some precious time alone with Matthew tonight as Dustin was at a friends working on his pulling truck. Matthew and I cuddled and watched tv, played with blocks, read books, played a mimicking game, played peek a boo and I taught him how to share a secret by whispering psst, psst in my ear. He was so funny and engaging. He has the most precious smile and laugh. Sometimes I get stretched thin at home and I hope that I never let that be an excuse to miss out on the blessings that Matthew brings to our lives. He is a real treasure and such a bright light in every day!

Tomorrow Luke has his 4 month well baby checkup (is it okay to call it a well checkup when there are underlying issues?), we have our Help Me Grow coordinator coming out for a service update and Luke also is supposed to have physical therapy. Our house is a wreck and I doubt I have time to clean before our in-home visits tomorrow so I may just have to ask our company to turn their heads the other way and promise to have things tidy for the next visit... I hope tomorrow is better....

We're going home!

We have Luke all dressed up and ready to go home! (thanks to Fran Puster for the outfit... It was a gift for Matthew that we are wearing again with Luke!) I can't wait to get home and see Matthew! Last night when I called home, he was calling for "mommy" through the phone and for the first time, he actually talked on the phone to me... Usually he has always just listened. It was neat to see him learning how to interact with others through technology!

New Pajamas

Luke got new pajamas this afternoon... Goodbye peach gown, hello peach gown with bears. Also, Dustin caught a pic of me acting silly with Luke in recovery... Nothing like being giddy while you hold you baby!

Heart Cath Results

We just spoke with our cardiologist and she was very pleased with the cath. Luke's arteries allowed easy access, he didn't lose much blood and the pressures were favorable. We will look to hold off on his open heart surgery until he is bigger!! [tears of joy] We didn't discuss timeframe for surgery just yet, but she shared that she won't need to see him back for 3 months!!

On another note, his white blood cell count was down again, lower than it was last time (and last time was a concern). Our cardiologist shared that she is going to talk with hematology and ask that they see us while we are admitted today or tomorrow or if not, maybe we can come back to see them next week. The low white blood count indicates that he is "sick" although he doesn't appear to have any cold symptoms. This has been floating around the back of my mind, but we were hoping that the last time it was low that it was just a reflection of him recovering from having RSV back in February... I hope it's not something serious.

10:25 Update

Apparently they got what they needed sooner than expected ... We just heard that the cath has been completed. He is still asleep, but the cardiologist is getting ready to sign out of the lab to come talk with us. The anesthesiologist will work on waking him up and we will likely be able to see him in an hour. I'm relieved, but scared to hear when surgery will be...

10 AM Update

A nurse just called to tell me that Luke is doing well and that they have just accessed his heart with the catheter. They haven't gotten to the point that they've taken any photos or injected any dyes yet or anything. This morning before they got started, the fellow reminded me that they'd be using the cath to measure the blood pressure, amount of flow across the holes, the size of the holes and other measurements inside of his heart. He also told me that because we know that Luke's heart has a mild imbalance in that the left ventricle is known to be a bit smaller than the right, if they can get the catheter across the top hole (the atrial septal defect) into the left ventricle (apparently they typically would do all of the measurements while working in the right side of the heart) that they will attempt to measure the pressure in the pulmonary artery as well likely injecting a dye into the left ventricle to better measure the true imbalance. We also found out that they didn't have to intubate him, rather he has been placed on a less invasive ventilator called a supra glottic ventilator aka an LMA device which is placed above the vocal chords. I am so relieved that he didn't have to be intubated.

She will call back in another hour with an update. She wasn't sure if they'd only need another hour or if it would be two more. We will know when she calls next time.

Surgery began at 9 AM

We were able to stay with Luke this morning right up until he was laying on the operating table in the cath lab. We received word just recently that they began the catheterization at 9 am. We are hoping to hear an update within the next 2 hours. Here are some photos of Luke this morning. I thought the infant sized hospital gown was bittersweet... Cute and hard to look at both at the same time. I was struck with how small he looked on the table and we also were amazed at the number and size of the monitors on the right of the bed. In addition to our cardiologist there was a cardiology fellow present (he also saw Luke in the NICU following birth) as well as an anesthesiologist and his fellow as well as probably at least 6 nurses.

Also, Dustin and I were both surprised about the location of the cardiac cath lab where Luke is right now. If you remember, I delivered baby Luke here in Cleveland at the Clinic in a unit they call the Special Delivery Unit (SDU). We were told the SDU was connected to the cath lab, but until today, I never realized how connected it really was... It's literally on the other side of one door. Amazing to walk through that unit and reflect on the morning of December 22nd, 2012 when baby Luke joined our lives. Also such a reassurance of the technology available to mothers with cardiac issues who deliver here or for families delivering babies with known cardiac issues. I am struck with how blessed we were that snowy morning that Luke didn't need to visit the cath lab, but also with the fact that we are in this network.

Up and at 'em

Well its 4:40 AM I've been up for an hour already. I fed Luke at 4 AM as instructed and he's back to sleep now. I still need to pack our overnight bags as we are planning to leave for the hospital in just over an hour. I don't have an hours worth of packing to do, but there isn't enough time to go back to bed either, although I desperately wish I could jump back in, snuggle under the covers and sleep for hours straight. Dustin isn't feeling well, he started coming down with the initial symptoms of a cold yesterday... Runny nose, sore throat, achy, etc. I wish I didn't have to wake him soon, I know he's likely going to be miserable today, although he's a pretty good trooper and if I know him like I think I do, he probably won't complain to me about how he's feeling.

I've mentioned before that we've been trying to "protect" Luke from potential germs (fortunately cold and flu season is coming to an end soon). For that purpose, we've not been to church since Luke's birth. We were so blessed last night to have a visit from our pastor who brought us communion, prayed with us and also just visited for over an hour and a half! We have a lot in common with her as she also has two young kids and it was fun to catch up and share stories!

I'm debating whether or not to wake Matthew to say goodbye before we leave. I'm sure I won't be able to justify disrupting his morning just to get a hug and kiss for myself, but I know I will miss him terribly, even if its just for a day and a half.

I'm supposed to give Luke pedialyte at 6 AM and we are planning to already be on the road by then, so we will likely have to pull off the interstate somewhere to attempt his last feed. He's never had the sugary sweet taste of that stuff before and I'm looking forward to his reaction, although I'm guessing he won't like it and I'm thinking it might be wise to also pack some water in case he doesn't like it. We have the orange flavor and personally I think it's disgusting!

We have directions to park somewhere new this morning and I have a bit of a anxiety that we won't find it and will be late to check in because of it. The clinic is so massive that the thought of going there can be overwhelming at times. Fortunately the signage is pretty good and we will probably find where we need to go without issue. I'm going to resign myself to stop worrying about everything today....

Now that I've passed some time writing, we have to leave in 45 minutes now.... That might be the right length to get us packed up and ready to go. I'll plan to write another update later this morning after he's been taken back for his procedure and we are settled in the waiting room. Thank you to those of you have been praying for our family, we are beyond grateful to have you as friends!!

Heart Catheterization

Luke's cardiologist called last night to tell us that she was reviewing his case to prepare for today and that she wanted us to know that she is expecting that we will need to do the cath...

I'm holding baby Luke right now... He's on his belly and has his head resting on my shoulder. I can feel his breath on my neck and the rise and fall of his chest. I can feel life. My life and his entertwined as one in this moment. A mother and her child. I've always wondered if I was in the moment, if I would give my life for another and I know tonight that I would. I wish I could do this for Luke tomorrow.

The cath is considered relatively safe, I don't want you all to worry for us. The vast majority of babies come through with flying colors. The real risk is us not knowing that he needs surgery and this will suggest the right timing.

I need your HELP!

Dear Readers -

I'd like to know more about you!  Please complete the attached survey to help me better understand "Luke's Legion"... you, the people behind the scenes lifting us up in prayer, pushing us forward in love and learning with us as we dive deeper into the world of disabilities and delays. 

As I've shared previously, Luke will be in the hospital on Thursday and if you have time between now and then, I'd love for you to share some annoymous feedback with me about our blog, giving me something interesting to read and digest that morning to help take my mind off of baby Luke.  If you don't get to it before then, thats okay too... we welcome your feedback regardless of whether it's now or later!

Luke: Lighting Up Our Lives - Survey Monkey Link

Much love and many blessings to you!
Kristin

The Inspiration of Children

People have sometimes made comments to me like, "I don't know how you do it" and "special kids only come to special people."  I know they are meant as compliments and I've said thank you and have gone along my merry way, but in the back of my mind, I've always thought about how if they were in my shoes they'd be doing the same things we're doing.  If I could have chosen this path for baby Luke and our family, I'm not sure if I would have been up for the challenge.  Dustin and I have both grown so much as individuals and parents over the last and a half and it started with bringing our typical child, Matthew into the world in August of 2011.  Since we humans typically pick the path of least resistance, I'm not sure if I would have appreciated the special challenges and growth that we'd achieve through the life of Luke.  Fortunately, we are living a plan designed by our divine creator and He knows the type of growth we need in our lives and he has given us the tools to make the best of our situations.  I think it's impossible to not love your children and when you love someone, you're willing to do anything and everything in your power to best meet their needs and show them they are loved.  Matthew and Luke have both inspired me to be a better person and the best part is that they've done it in different ways!

Physical Therapy Update

I feel like I've sat at our computer all morning writing and getting caught up on what's been going on in our lives.. it's incredible how quickly time flies and when it's jam-packed full of everything under the sun, it's hard to take the time to write... but like I've said before, it's my therapy and I enjoy the reflection that comes along with it!  Unless something else comes to mind today - this will be my last post.  Luke continues to receive in-home private physical therapy twice per week as well as in-home physical therapy twice per month from a therapist with the Wayne County Board of Developmental Disabilities.  This week, it was determined that Luke might be a little delayed with neck strength associated with pulling forward but otherwise he seems to be mostly on track for his age.

Things he's doing well now include:

• Picking his head up while practicing with tummy time and he is even able to turn his head while doing tummy time to track an object
• He tracks an object well while laying on his back
• He grasps and holds small objects
• He is able to find and suck his thumb
• He bats at toys that hang from his activity gym and his bouncy seat
• He smiles, coos and talks in response to be smiled, cooed and talked to
• He rolled onto his side one evening last week, although I think it may have been a fluke since I haven't seen it since
• He is able to focus on an object (although he seems to respond better when you are closer to his face, making me think he is still a bit nearsighted)
• His tone seems moderate to good - we see less resistance and stiffness than we used to

Things we are working on include:

• When he is laying on his back (either on the floor on on our laps) we pull him forward, getting his shoulders off the ground, allowing him the opportunity to strengthen his neck muscles and pull his head up off the ground or our legs
• Balance while sitting - we put him in a sitting position between our legs facing outward and gently rock him from side to side, allowing him time to move his neck to offset the sideways position and attempt to regain his balance
• Continue to do tummy time while practicing tracking and turning his head from side to side to follow an object.  Also while doing tummy time, we place our hand beneath his chest and help position his arms and hands to teach him to push himself up with his arms.... hopefully he will get strong enough soon to push up on his own
• We also work on rolling - moving his legs enough to give him leverage to help him move himself to roll over

In the spirit of therapy... this time more emotional therapy over physical therapy... since we do most of our therapy sessions on the living room floor, I'd like to give a huge thanks and shout out to Kristy Spreng, Pat Winkleman and Connie Frey as all three of them gave us handmade blankets that we use frequently during our therapy sessions! It is awesome to have the right kind of tools (made by people that care about us) to help us enjoy these [sometimes tedious] tasks.  Also, thank you to Bethany Haynes for a pack of the most wonderful muslin swaddling blankets I've ever used!  They are the perfect weight and I use them for everything! Most recently, I used the solid white one this morning to help take pictures of baby Luke... it was the perfect backdrop!  I've also rolled them up and used them to help position Luke different ways during therapy!

More Family Photos

Back in January, we took Luke for his newborn photos and also took the opportunity to update Matthew's photos and of course took some photos of all of us together too!  Well the week before Easter, we had our photos taken again, but this time did them with Dustin's Mom and Sister and the extended family on that side.  Early next month, we're going yet again for photos with my Mom, Brother and Sister! I am looking forward to utilizing all of these great photos of us throughout our home!  

Today's Choices, Tomorrow's Rewards

My employer provides onesies for babies of employees.  Once the baby is born, photos are taken of the little one and the parent follows up by submitting the photos so they can be posted internally for all employees to view.  This morning, Luke and I completed his "photo shoot" with the logo onesie.  While I'll probably just submit the first photo I'm displaying here, I thought a few more were blog-worthy...

PS - The second photo showcases a pretty distinctive feature shared by many individuals with Down syndrome, a larger than normal space between their big toe and second toe.  Baby feet are so beautiful and I love this picture!

Luke's Upcoming Cardiology Procedure

It's been a while since I've given a good update on where we're at with Luke's heart.  As you know, Luke has AV Canal and he is facing open heart surgery.  The repair for this particular defect generally occurs when the individual is between 4 and 6 months old... Luke is currently 18 weeks, which puts him 2 weeks shy of 4 months.

We've been hoping at our last few cardiology visits to get an estimation on timing for the repair, however with each conversation, we've heard different time frames.  Before he was born, we heard that it would be between 4-6 months old.  After he was born and was still in the NICU, we were hearing that it could be around when he was 6 months old, mostly because of issues like his Patent Ductus Arteriosis (PDA) taking a while to close after he was first born.  Then he contracted the RSV virus and once he'd recovered from RSV, we heard that it could be as late as when he's 18-24 months old.  I don't necessarily think that him getting RSV changed anything for him, I think it was more related to him getting bigger and stronger and his heart dealing with the defect better as he's continued to grow.  As a generalization, what we've heard has been that overall he presents well and the blood pressure in his lungs is at an acceptable level.  Not to go into the blood pressure thing too much because I still don't fully understand all of the complexities, but basically, the heart is a pump.  The right side of your heart receives blood from the body and pumps it to the lungs. The left side of the heart does the exact opposite: It receives blood from the lungs and pumps it out to the body.  The two holes in Luke's heart allow a portion of the oxygenated blood from left side of the heart to flow back into the right side where it mixes with the de-oxygenated blood and is re-pumped to the lungs.  If left untreated for too long, the increased blood flow aka blood pressure will cause the right side of the heart and lungs to become enlarged... an irreversible problem that would lead to additional life long cardiology and pulmonary problems.  If left completely untreated, Luke would probably not live past childhood or at the longest, through adolescence, versus with the repair, his life expectancy should increase to at least 50 years old.  At our last cardiology appointment, we did our routine visit, one that consists of an echocardiogram, which is basically an ultrasound of the heart, he had an electrocardiogram, which is where they place little stickers on his chest that connect wires to a computerized machine that measures his heart rhythm and he also had his blood pressure measured in all four extremities as well as the usual weight, length and pulse ox measurements.  Everything looked good, with the exception of there being some ambiguity when the results were read of the echo as the hole between Luke's ventricular chambers of his heart (this particular part of the defect is known as the VSD) is structurally located close to his tricuspid valve.  Apparently when reading the echo, it was hard to determine where the blood flow that they could visualize was coming from... was it from the tricuspid valve which would be normal or was it coming from the VSD?  If the flow is coming from the VSD, surgery would be required sooner rather than later.

In response, our cardiologist has recommended that Luke undergo a sedated echocardiogram, which they are hoping will allow them to get a better ultrasonic view of his heart.  This means that he will be under anesthesia and will also be intubated and breathing on a ventilator while they perform the echo.  Our doctor hopes that with him being completely still they will be able to see what they need... supposing they don't see what they need, while he is all set up on the vent and anesthesia, they will continue with a heart catheterization.   If they proceed with doing the heart cath, they will no doubt find what they need as it would be an invasive procedure, similar to what is done with adults.  With a heart cath they will place a catheter through the femoral artery in the groin area and proceed to the heart where they will be able to accurately measure the amount of flow coming across the VSD, the blood pressures in the heart and will also inject dye through the catheter and will take x-ray video to record where and how liquid flows through the heart and lungs.  

The procedure is scheduled for coming Thursday morning - we have to be at the Clinic by 7 AM and it sounds like they hope to be starting with him by 8 or 8:30.  Apparently, if they only need to do the echo, he should be done by 9:30 or 10 and if they end up also doing the cath, that will add another 2 hours to the procedure.  The benefit for us will be that once they're done, we will have word from our cardiologist of what they found and a good idea of when they will be scheduling his open heart surgery.  I think we will be able to be with him right up until he is taken to the pediatric cath lab and will also get to see him again once he is in recovery and will hopefully be there to greet him as he wakes up from the anesthesia.

As I've been thinking about this and counting down the days until we mentally and physically move into the very draining "Clinic" mode, which has historically included time in the NICU, washing clothes at the Ronald McDonald Family Center, preparing for our doctor's rounds and discussing medical terminology I don't fully understand, I have decided to just cherish every moment with our boys over the next few days.  The sedated echo and heart cath are pretty routine procedures and our doctor has indicated there is a less than 1% risk associated with them being performed.  We don't expect for Luke to be in the hospital long and we already have family care lined up for Matthew which will allow him to stay in his surroundings and sleep in his own bed, minimizing any impact to his own routine and further eliminating worry from mine and Dustin's minds as to where he is and what he's doing.  Before giving Luke his bath last night, I decided to capture a few moments with our sweet little man. 

Matthew's New "Ride"

A few weeks back, Matthew had his first opportunity to ride in one of the Little Tikes' red Cozy Cars.  He loved it and was really upset when his time to ride was over.  Now that the weather is improving, we're finding it hard to get him to come indoors in the evenings.  Even though until now we didn't have any outdoor toys, Matthew has been happy with chasing the dog, kicking leaves, picking up sticks as well as his random wanderings through the garage and in the yard.  After finding it difficult to find and purchase used outdoor plastic toys, we bit the bullet and bought a couple of new toys for him.  The first to be assembled is a new and improved version of the Cozy Coupe, a self proclaimed hillbilly family's dream.... the Cozy Truck.  It arrived in the mail (thanks to free 2-day shipping courtesy of Amazon Prime) on Friday and we spent the better part of yesterday morning assembling  this new shiny plastic obsession of our 19 month old.

Matthew even woke up this morning asking to "ride" as he calls it and he was more willing to offer up some happy faces for me today... As I snapped the last photo Dustin commented about how he hopes the sippy of milk is all he ever chooses to drink behind the wheel... thats a long ways off I guess, but the realities of teaching those concepts will surely begin before we know it.  If you agree, join me in raising a glass [of milk, of course] to enjoying the innocence that comes along with being a toddler...

Over the river and through the woods...

... to Grandmother's house we go...

Last evening, Dustin and I took to boys to visit his Grandma and Grandpa Taylor.  Here are some photos from our time together.