the birth story

I've read several birth stories from other families who delivered (unexpectedly) a child who they didn't realize had an extra chromosome. As for us, we already knew our Leo had a little extra something special. So when it comes to Leo's birth story there are no days of worry and surprise, no moments of disbelief and fear. In fact, we had five whole months to know about, adjust to, and check on the health of Leo with regards to his Down Syndrome.  We had plenty of time to carefully plan for his safe arrival.  Because of that, I'm now a firm believer that there are great benefits to knowing ahead of time the makeup of your baby... but that, my friends, is another blog post in itself.

Instead, I want to tell Leo's unique birth story.  Because while we attempted to know everything we could about him and be totally prepared to joyously welcome him into this world, when it came time for Leo's birth, well... God taught us that we were most certainly NOT the ones in control.  And here is Leo's story...

It was March 4, 2012, the last day of week 36 for this very pregnant momma. I had been nesting off and on, to the point of beginning to make sure loose ends were tied at work each day before I left and that everything was already packed in my car for the hospital. Since Meris had arrived at week 36 on the dot (almost week 29...), and Seth had arrived at week 37+2 days, I knew Leo would come any day now. March 4 was a beautiful Sunday from what I can remember, a nice chilly spring-ish day.  

We had gone to church on Sunday morning as a family, and it was now Sunday evening. Chris and I went to church again leaving Meris to wait for Youth to begin and dropping 3 yr old Seth in the childcare room with his dinner. We headed over to the building next door for a Bible Study and dinner, meeting up with friends.  After the Bible study, we walked to the main building to pick up Seth.  The lights were off in this area as we walked to the entrance we needed, only to realize the doors were locked.  I was achy and tired from a long day. "Why don't you cut through the playground to get to the front of the building, and I'll drive around to pick up you and Seth", I said to Chris. He agreed and I was happy not to have to walk any farther!

He went through a gate and began to walk through the playground toward the front of our church as I walked to the driver's side of our van which was parked in the dark only a few feet away from me. Before I could realize what had happened, I felt my feet taken out from under me as I tripped. I felt my body go up in the air and down toward the ground almost in slow motion, and instinctly put my arms down to try and catch myself... but it was no use, as I landed with all my weight flat on the right center of my pregnant belly.  I didn't realize there was a parking barrier/block in my path to the car door, which I had tripped over in the dark. I was startled, shocked, and in pain, but managed to call for Chris "I fell!" He came running back toward me. 

With my stomach immediately beginning to tighten and soreness coming over me, he managed to pick me up and help me into the van.  We were both frightened and trying to decide what to do as quickly as we could. First task, gather our children. After a quick drive around to the front of the building, dialog with friends, confusion about what we should do and which hospital we should go to (nearest ER, or the planned birthplace - a 30 minute drive), we decided to leave our children at home with friends and make the trek to the planned birthplace.  My fear was being admitted and possibly giving birth at the local hospital, instead of our planned location which had a level 4 NICU.

We arrived at Presbyterian Hospital of Dallas with me in tears and with Chris in a lot of fear. I hadn't felt Leo move since the fall.  He had gone from completely active to completely still, and it was scary for both of us.  Here we had spent months carefully watching Leo's organs, planning for his health needs, and making sure his little nest inside of me was perfectly cared for...only to come this far and possibly hurt him with a fall on the hard asphalt?  It was heartbreaking.  Once we began to get settled in the Labor and Delivery area, I realized I had cuts on the hand, knee and foot of the side that I fell.  I told my story about the fall over and over to multiple staff, as each one got involved in my care.  I thought, "wow, can't they just read the note? Or maybe no one has had time to write one..."  Although later Chris and I discussed how they probably had to make sure this wasn't an instance of abuse but having me tell the story over and over, looking for things that might not match up.  How sad!

Soon after our arrival, I began to feel Leo move occasionally. On the monitors, he looked great.  Blood was drawn to make sure there was no bleeding occurring by me and by him.  One of the perinatologists from the practice who had followed me came in to perform a level 2 sonogram and check in on Leo.  It showed that his status was beautiful!  With every test, I began to relax more and with every relaxing moment, I ached more from the fall.  

The perinatologist decided to keep me overnight for observation, since there was a chance the fall could set off labor and I was already having mild contractions.  Since our drive to the hospital is 30 minutes and I am known to be a very fast laborer, she didn't want us to worry about having to drive right back in. Chris and I settled in to an overflow area and the monitoring continued.  

Soon it was early Monday morning, which quickly turned into almost noon.  My OB rounded to check on me and saw that I was actively contracting. She said this could also be caused by dehydration, so she ordered an IV for fluids and said she would check on me in a few hours. If I was still in active labor, we would follow through with our planned c-section.  Wow....that was hard to believe!  But when she returned around 4pm and confirmed that I was not only continuing to contract in active labor, but had continued to dialate, we were immediately taken to labor and delivery to prepare for Leo's arrival.  

After one very sleepless night....

At 5:27 pm.....

We welcomed this little bundle into the world!!

Leo John Christopher Ghormley, weighing in at 8 lbs...

who chose the peak of excitement to make his grand entrance.

Happy "birth" day, my precious child!

I'll love you forever,

Mom

rubber ducky, you're the one

Leo has been sitting up so well in the past month that we realized it was time for a new step in bathing. He graduated from the baby tub (which supported him leaning back), to the ducky bath!  So, does he like it?

I'll let the pictures speak for themselves...

Rubber Ducky, you're the one...

... you make bathtime lots of fun,

Rubber Ducky, I'm awfully fond of you...

... and I adore my brother too!

with love,

Leo



yes, 11 months already!

Our little lion is 11 months old today!  Can you believe it?  And check out his latest trick...

 I can hold on to stand!

He's not taking steps yet, and not even pulling to stand, but he sure does like to stand on his own for short periods of time with Mom's help!  It's a start...

Today we also celebrated another birthday.  Leo's big brother, Seth, turned 4 years old today.  When I posted pictures that included Seth's baby photo there were lots of comments about how much that baby picture looked like Leo.  So I thought I would do a little side-by-side comparison.  The interesting thing is Seth was 6 months in this picture and about the same size as Leo who is 11 months.  In fact, I still have these little overalls (size 12 mo) and I'm planning to have Leo's photo taken in them for his 1 year pictures!  Isn't that crazy?



More alike than different...

Seth on the left (at 6 months) turned 4 yrs today... and Leo on the right turned 11 mo today! 

I know it's been a whole month since our last Leo Update, and the biggest blessing is that I have very little to share.  I have to say (although I hesitate to let it slide off my fingertips as I type it...), this past month has been the quietest one so far, medically speaking, since Leo was born.  Hoooo Rahhh!!  Finally. A little break.  After recovering from surgery in December, Leo had another respiratory virus in mid-January at the same time Seth had strep.  His visit to the pulmonologist was basically uneventful.  He had another synagis injection to protect against RSV.  We followed up with the pediatrician to have blood counts rechecked (after some abnormal labs following surgery), and those were perfect.  I can happily say those four sentences sum up our month!

As for milestones, he's been sitting up longer every day and has completely mastered the skill.  Leo still likes to get on all fours and rock, but hasn't shown much interest in crawling yet... he still loves to roll.  I guess he's just a rock-n-roller!! Actually, I think he's smart enough to realize rolling gets him around faster.  He loves to stand but isn't interested in taking steps yet.  There's a lack of confidence in balance right now, that's for sure.  But if there's one thing this boy loves to do, and I mean LOVES to do... that's talk!  He jabbers constantly now. And I swear, he talks back!  If he isn't happy about something (especially working in therapy) he will not hesitate to complain about it.  The funniest little thing!

All in all, we are incredibly proud of how our little lion has grown....

 

Oh how we adore this precious boy!

With love,

Joyce

A New Year and 10 mo. (belated 9 mo.) check-up

With 2012 behind us, and all of the overwhelming challenges it brought... one of which was Leo's surgery, we are very excited to see what new things 2013 will bring.  I know it hasn't been very long since Leo's last update. But there are actually some new things going on and on the horizon that we had to take advantage of this chance to share!  The first being, Leo's belated 9 month well check-up.

Leo is actually 10 months old now. His 9 month check-up was delayed by our pediatrician because she wanted to see how he was doing after surgery. His stats:  weight 19.75 lb (25th %), height 27.5 in (10th %), and his round noggin measured in the 30th %!  His weight is right on track with where it has been, even though he hasn't gained in about 6 weeks. The good news is that he's re-gained the weight he lost during surgery.  Our chunky monkey has finally added some ounces on to his long term standard 24 oz per day... the past week he's been eating 28-30 oz per day.  He's been at 24 forever, it seems!  The only concern is his height.  He was in the 25th % for several months from birth, then the 50th % for a couple well checks, and at the 6 month visit he dropped to the 25th % and now the 10th %.  His thyroid is being rechecked to see if there are any issues causing the slow down.

In a way, our little man seems so big to us.  Yet his sister and brother were both in the 90th %... so he actually is quite small for our family standard.  His pediatrician went so far as to call him "petite" today. Who would've thought?  No matter what his size is, he is perfect to me.

The only other area of concern was an elevated platelet count.  This could be caused by the fact that he's just getting over the viral infection and pneumonia.  Leo will go back in a couple weeks to get the platelet count rechecked.  We would appreciate prayers for this area!

As far as development goes, and I quote, "he looks great!"  Apparently some of his recent tricks show he is leading up to crawling very soon.  He is much stronger and more balanced than what he wants to lead mom and dad to believe. Hmmmm... I wonder who likes to be held??  He actually sat up much longer for his doctor than he ever has for mom.  Apparently, we have ourselves a show-off... 

After 10 months of sleeping "elevated", aka ... sleeping in the bouncer chair, we have the go-ahead to move him straight to laying on the mattress.  Hooray!!  Now our big boy can enjoy sleeping in whatever position he likes.  He has wanted this for several weeks, so he happily put himself to sleep on his own tonight, sleeping on his side on his big boy crib mattress.

Now for our biggest news of all... Leo has been working on his first two teeth coming in for the past 10 days.  Yes, not one but two!  Finally, today... (and honestly, with the way he screamed on the way to take Meris to school this morning - I think that is when it happened...) his first tooth finally broke through!  I can't capture a picture yet, as it isn't in far enough... and little fat tongue keeps getting in the way... but believe me, there will be plenty of cute toothy pictures to come very, very soon!

We hope you all have had just as great of a start to 2013 as Leo has.  It's going to be a great year!

Love,
Joyce

where did December go?

In the blink of an eye, just like that, December is gone. In all honesty, December was a bit of a blur!  For the past 5 months, we anticipated Leo going through surgery and for the past month, preparing for it consumed a lot of our time. Now that Leo is 12 days post-surgery, things are finally back to feeling normal.  Which brings me time to do a little December recap on 9 month old Leo.

First a little developmental recap -- Leo has really proven himself this past month. He has gone from a struggling to a confident "sitter", even if for a few moments before he tumbles over. He pushes himself up to "all fours" (hands and knees) and rocks, so he is really gearing up to take steps toward crawling. He still loves to bear weight on his legs and will hold on to toys in a standing position (with assistance) for a minute or two before tiring to fall.  His upper body strength has always been weaker but for some reason, he has really gotten stronger this past month.  Maybe it's that he's worked so hard in physical therapy, or maybe it's timing where he is just starting to catch up. Either way, we're so very proud of how he pushes himself and how far he has come!  Verbally, he's been blowing raspberries this past month and is adding "mamama" a little more often.

For the rest of my recap, I began to type this three days ago and at this point I think I've rewritten it about 5 times.  In part, because I've had many interruptions. But also in part, what I wanted you to read was not initially coming out onto the keyboard. In the past several months, giving a recap of what Leo's been up to has almost been a rundown of the many appointments, new diagnoses, or other obstacles he has been working through. But in truth, December came to mean a lot more than that to me.

The quick and dirty medical recap would say Leo had about 15 appointments in December, spent time being sick and on four consecutive rounds of antibiotics, had surgery on December 20th for the obstructive apnea, post-surgery caught a virus that led to pneumonia, became dehydrated, was readmitted to the hospital so that we spent both Christmas Eve and Christmas day hospitalized, continued to struggle with recovery for several days after coming home, but now is doing great.  I could have shared with you all the original details that I typed which extended the explanation of everything into about seven more paragraphs!  But again, there are so many more meaningful things I am taking away from December in my heart that I would rather share.

Until this past month, I had no clue what other families in our DS community (or any family, for that matter) went through to prepare for, go through, and recover from surgery with a child. I was one of the ones who sent my prayers beforehand, asked how the child was afterward, and went on about my business.  I now have a new level of appreciation for, and compassion for, all that parents do for their children under these circumstances.

I've come to realize that complications like sensitivity to morphine, dsats (drops in oxygen saturation levels) due to inflammation or respiratory illness, resistance to eating when the throat is sore, and dehydration are common to infants or children with DS.  Likewise, Leo has shown that a fighting spirit and a sense of normalcy are just as common.  For example, even while on oxygen, heart monitoring, with an IV in his arm, and running a fever, he still insisted on having tummy time in his hospital bed. Even when he felt his worst I was amazed by his spirit. How he wanted to turn over, move around, and even play for short periods of time!

I have to be honest - when Leo was admitted to the hospital on Christmas Eve my heart sank. My first thoughts were about our 3 year old at home, how it wasn't fair that I wasn't there to make cookies for Santa and have Santa's gifts ready for when he woke up Christmas morning.  The stockings weren't yet hung by the chimney with care, and a lot of things were left completely undone.  As hard as I tried, I did not have every little detail of Christmas completely done prior to Leo's surgery. I thought I would have time afterward, but I was wrong. I also thought about our 14 year old daughter and how I wanted to be at home when she opened Christmas gifts, yet it would be so unfair to have her wait. All my little traditions that I had carefully built over the years and the perfect Christmas morning we would always have had been torn away right before my eyes.

I quickly learned of so many other friends who have been through the same thing - DS or no DS, families who had at one time or another spent Christmas with a child in the hospital. That's when I told myself if they could survive it, so could we!  I also learned.... Santa could wait and come later after mom and Leo came home, he was fine with that.  He had done it before for other families and would do it for us.  Allowing a 3 year old to open gifts just from grandparents on Christmas morning was enough to bring the biggest joy to him.  He didn't need to open all those other gifts afterall!  Knowing that there were gifts still left under the tree to by opened by our 14 year old was actually exciting to her and she enjoyed having Christmas spread out over a few days instead of finished by 9:00 am on Christmas morning. Volunteers at the Children's Hospital who delivered gifts to all three of our children on Christmas day in Leo's hospital room inspired our family to want to be a part of that joy for other families next Christmas.  Ordering room service from the hospital cafeteria could be fun because it became our "Christmas Feast", per Seth, and a wonderful meal to enjoy together as a family. 

But the Number One thing I learned... is that when you have a sick child, all time stands still and nothing else matters... not even Christmas.  Having our family together in one room was holiday enough, traditions went out the window, and even in the eyes of a toddler and a teenager there is complete understanding that the focus needed to be on Leo. This Christmas reminded me of what truly matters, and that was definitely not the wrapping paper, the gifts, the filled stockings, the traditions, nor the perfect Christmas Eve meal. It was simply being together.

As I reflect on all that I've shared with those who read my blog over the past year, I hope you take away one thing.  Not that Down Syndrome is a burden, not that having a child with special needs is a chore, but that no matter who your child is and what their needs are, you just rise to the occasion as a parent. Not as a supermom, not because you were the chosen one for this special child, but just because that is all any good parent would do out of love for their child.  From there, everything else just manages to fall into place.

I can't wait to see what Leo has in store for us in 2013. I know there will be some trials (because with any kids, there just are...), but I also know there will be immeasureable joy!

Happy New Year to each and every one of you.

with love,
Joyce

A little medical update on our lil' turkey - 8 months!

It's that time again, the end of another month. I know, I know... I'm a broken record by saying this. But I just can't believe another month has gone by!  Soon, Leo will no longer be 8 months old. His first year is going by way too quickly!!

Here are some updates on our little turkey....

November actually started out pretty slow and quiet, with fewer dr's appointments than normal. After more than two months of either steroids for croup or wheezing, Leo was FINALLY well enough to have his 6 month immunizations.  I was really excited about that until he ran a fever over 103!  This was his highest fever yet, and a little scary. He was miserable for about two days and then fine afterward. He also had the second of five months of synagis injections. Luckily, this month he had no reactions at all. Not even a smidge of fever.

Despite these brief "well" periods, Leo continued to have fluid in his ears, ear infections, and sinus infections. He's been on antibiotics for all of November with the exception of 6 days - currently on his third round. The good news is that he's required fewer breathing treatments this month than September or October, despite all his chest congestion. We think the Advair has helped tremendously. The bad news?  Advair in Leo's dose is now on 'back order' by the manufacturer and out of stock in all pharmacies in our area. Possibly another example of a pharma company choosing to stop making a medication dose that isn't in high demand, since it isn't as profitable?? So we recently had to switch to Symbicort. Praying that it will work just as great!

This month also brought along his follow-up with the ENT doctor. I had been dreading this visit for a while, since I knew it would bring us to facing the decision of surgery again. But now that the time is here, I'm just ready to get it all over with. Dr. Mitchell, Leo's ENT, and Dr. Rosen, Leo's pulmonologist, both agree that a current sleep study will ultimately decide where things stand with his obstructive sleep apnea and will decide for us whether or not we'll need to go ahead with surgery. As of right now, surgery is actually scheduled for December 20th. It would include removing tonsils and adenoids (to resolve the obstructive apnea), a bronchoscopy to look at his airway structure, tubes in his ears to resolve the fluid and infections, and ABR (auditory brainstem response) which is a hearing test performed under anesthesia to check for any level of hearing disability. The ABR is standard for babies and young children with Down Syndrome any time they are scheduled to go under anesthesia. Some level of hearing loss affects about 60% of children with DS, so it's important to identify and treat as early as possible.

So, the sleep study took place last Saturday night. Let me tell you... this one was even less fun than the first!  Leo woke up and wrestled with the wiring and nasal canula about every 15 to 20 minutes from 8:30 pm until 3:00 am, at which point he slept for a whopping 75 minutes straight (with a very sarcastic woooo hooo....).  At 4:15 am, there was no getting him back to sleep. Please pray that the technician didn't exagerate by saying he had enough data on his sleep.  I can't imagine either of us having to go through the all night battle of another sleep study any time soon!  Not to mention paying another $500+ out of pocket expenses to go through it again... ugh!!  I promise you one thing, this boy could pull a Houdini on any given day. He was ripping gauze, moving wires, and removing tape like nobody's business.  If only we could market that!

Last but not least, there was a visit to the GI doctor yesterday. It was by far the best visit of all this month!  After a huge weight gain noted at the previous visit, which was pretty concerning, Leo is now holding steady at the 50th% on the growth chart weighing in just over 19 lb. He's doing better symptom-wise with his reflux. The amount of food he's regulated all on his very own, right at 24 ounces a day, is perfect for his growth. Sidenote - I'm always amazed and surprised he can survive on such a small amount of food for his size, but apparently DS causes a much different (and usually slower) metabolism which requires less food.  The fact that he is regulating this all on his very own, and that we're not pushing him to eat what our previous babies would normally eat at his size, got us kuddos and props from his GI doc.  He's doing so well that he gets to wait another three months before going back for another GI visit!

On the therapy side of things, he's been working really hard with PT, OT, and speech (feeding) therapy. He's doing really well working on upper body strength and has come a looong way toward sitting up. Especially in the tripod position (holding his upper body up with his hands on the floor, while in the sitting position) for up to a minute, and he's starting to sit up for a few seconds at a time without holding on to anything at all!  Even though he's behind when Meris and Seth met this milestone, our pediatrician says he is still within the range of a typical baby at this point. He's also working on some new sounds beside ba and da.... he's actually working on Ma!  My heart swells at the thought of him saying mama.  (I've only been saying it to him since about one month old, you know!)  So three cheers for our Leo, what a hard worker you are!

To close things out, please keep us in your prayers this next week as Monday, December 3rd, we return to the Pulmonologist and get the results of the sleep study. Again, this will be the deciding factor for surgery on the 20th. We are at peace with whatever the outcome is, as we only want whatever Leo needs. Obstructive apnea can cause pulmonary hypertension and new cardiac complications for him, so we want to fix this if needed. Please pray that the sleep study actually has enough data so that a decision can be made and not postponed. Surely God will have some mercy on us, or at least pity, after what we went through last Saturday night!

Blessings from Leo to each of you...

Love, Joyce

Giving thanks, in November.

All month long, I've been reading about what all of my "facebook friends" are thankful for. Each day there is something different. Friends, family, children, coffee, seat warmers in the car, a free Saturday with nothing on the calendar... the list is endless. Even though I wasn't one of those posting my "daily thanks" this year, believe me, I have so many things to be thankful for. I truly do! 

One of the things that I'm most thankful for this year has been Leo's good health. You wouldn't guess it by reading about all of the doctor and therapy appointments he has been to so far, or by the look of my calendar in the month of December - as we are bound to set a record for him! But compared to a friend in our local DS community with a baby who went in for open heart surgery a month ago who has been in ICU ever since, compared to our friends who have seen their sweet daughter go through the unimaginable in her fight against leukemia for the past 18 months, and another friend whose sweet boy has been battling brain cancer for years with an incredible amount of therapy, as well as the endless stories of other children fighting health battles that I seem to come across everywhere, every day...... in comparison, I. Am. Thankful.

Even more than this, I am thankful to have a heavenly Father, almighty God, loving Lord... who listens to our prayers as we petition Him for all of these children. One who provides comfort and peace for those in need. Who tugs at our hearts to reach out to others who need His love as they walk through their darkest days, especially those moments when caring for and worrying over a sick child. A loving God who sent his one and only Son to be born in a stinky stable and die a cruel death on a cross to save us all - giving us the Hope of an Eternity with Him, along with those that we love.  For this reason, above all things, the one thing I am most thankful for this month is .... Leo's baptism. 

On November 11, 2012...

We made a vow to raise Leo in a Christian home.

Leo John Christopher Ghormley was committed to our heavenly Father!

and we Celebrate!



2 Timothy 3:14-15   But as for you, continue in what you have learned and have firmly believed, knowing from whom you learned it and how from childhood you have been acquainted with the sacred writings, which are able to make you wise for salvation through faith in Christ Jesus.

With love,

Joyce