Sunday, August 30, 2009

Good Times...

.....Mmmmm o - r - e - o.

Wednesday, August 26, 2009


This is a request for love, asking all of you who believe in the unwavering power of the almighty to work miracles in this life.

For a few months now I've been quietly following a sweet little munchkin known simply as Noah..

Noah has the most amazing blue eyes, full of expression and wonder.

On April 20th of this year, those lovely eyes almost closed forever.

On that day, a day like many before, his parents Erin and Mike dropped Noah off at daycare.. not knowing that this would be the end of life as they knew it.

On this day Noah's daycare provider got angry, maybe she was having a bad day, who knows..
who cares.. all we know is that she took out her anger on Noah.

She shook the then 5 month old, almost to death.

Since that day Noah's parents have been fighting for many things. For their son's life, for his recovery, for justice.

Recently, Noah's Dad asked for prayers for his son once again. It's understood that Noah suffered brain damage from his attack. However, there was hope that with time his brain might heal. That he may be able to come off of the large doses of anti-seizure medications that he takes and finally be able to blossom.

Unfortunately Noah's parents didn't receive the news they were hoping for. Noah brain hasn't made the transition they had hoped it would. Not only that, but he will require more and stronger meds for some time.

Erin and Mike know just how lucky they are to even have their son after such a vicious crime.
But somehow they can't help but hope for the miracle that their baby boy's brain will recover fully. How can you blame them?

If you would like to learn more about Noah and offer his Mom and Dad some much needed support, please visit them at

You'll be enchanted for sure.

It's Scheduled

Vincentio's surgery has been scheduled. It's going to happen on Wednesday September 2nd.
He's going to have his GJ tube removed and the stoma will be surgically closed, since we all know that bugger won't close on it's own.
Then Dr.P will find an appropriate site to place a new stoma for a new G tube. If all goes as planned this site should heal normally and we will be able to return to gastric feedings.

Now this isn't going to be a simple process. I was hoping maybe they could do it laparascopically, but that isn't the case.
Dr.P will be opening his belly going back through the lower part of his diaphragmatic hernia repair scar. This will be the second time that this area has been reopened. He does feel that it's safer all around if he does it as an open procedure given V's history for having some tricky anatomy.

The healing will take longer for sure, he'll have to stay in the hospital for at least a couple of days, but if it works, we'll manage.
The folks at Arnold Palmer have always been wonderful to V. They are so on top of pain control and making sure he's comfy and happy all around. I have to say I really trust these people.

Still, I have to admit, I'll be crossing my fingers the whole way. We can use all the luck we can get.

P.S. Sorry I haven't posted any school pics.. to say the least it's been a "traumatic" week for Ryan. He's s l o w l y coming around to the idea so maybe I can get some happy face pictures soon. I hope.

Monday, August 24, 2009

He's Not a Baby Anymore

Oh I know he's ready, it's just that I don't think I am.
My six year old bundle of energy, Ryan, started kindergarten today.
I've known for some time now that he REALLY needed something more. School's been a callin' for months. He needs the extra stimulation, his little mind is more than ready. But today wasn't easy. He was crying when we left him in the classroom and he was crying when we picked him up after school.


I hope tomorrow is better. I would have some super sentimental "first day" pictures, but he wouldn't let go of me long enough to get any.

Guess I'm gonna have to try for some "second day" pics.

I know it'll get better. I know eventually he'll run off from the car without even looking back, and when he does I'll long for these days.

Don't wanna bring the post down, just please say a prayer for all those out there who's babies, excuse me, big kids, aren't boo hooing their way through the first day of school.
Because they are in Heaven, or on treatment, or just too fragile to share a classroom.

In many ways it's a tough day for us Mom's.

(I'll try to get some ultra cute, non boo hooing pics of my big boy tomorrow).

Sunday, August 23, 2009


To update on my previous post, Annette had a fairly quiet day today. Her parents, Natalie and Kirk, have had some unimaginable decisions to make in a very short time.

They have traveled this road before. They know cancer and it's ferocity.
They have seen one child consumed by the beast already. Now Annette.

Sweet, precious Annette is heading toward home soon. Later this week her parents will be bringing her home on hospice. They feel that they have done everything possible to save her life, and unfortunately, fate has made a choice for them that no parent should ever have to make.

The painful truth is that Annette is dying.

What her family wants at this point more than anything is to allow her to live out the remainder of her young life at home, comfortable, and surrounded by those who love her the most.

They have decided to go home with Annette and in her final moments among them, create their own miracle. The kind that can only come from the strongest of loves.

I simply cannot imagine anything in this world that could be worse than what they are facing at this very moment.

No parent should ever have to bury their child...

Saturday, August 22, 2009

The Maxey Family

As much a it hurts to ask, I must request prayers and love once again for a family in crisis.
Little Annette is not yet a year old, but for most of her life she has been battling an insidious brain cancer called AT/RT (atypical teratoid rhabdoid tumor). The cure rate for this type of tumor in children is often less than 5%.
Annette's family attacked this cancer full force, with every option available to save her.
This is all too familiar for them, five years ago yesterday (August 21,2004) they were forced to say goodbye to their first daughter Madeline. She also fought and lost her battle with rhabdoid cancer. Madeline also lived for only a year.
After Annette's diagnosis her parents underwent genetic testing and found that there is a genetic link to this type of cancer. Fortunately, their older son Grant did not inherit the gene.
However, Annette has been massively attacked by this monster. Recently, after another round of radation and chemo Annette stopped responding and had difficulty breathing. It was found that she suffered swelling in her brain caused by the very medicines that were meant to help save her life.
After weeks of searching for options to reverse this damage, yesterday, on the five year anniversary of Madeline's death, they were told that Annette has virtually no brain activity.
They do not believe this to be reversible.
Annette's family has endured more than any family ever should. They are rightfully devastated.
Please visit them and their precious baby girl (at www. and offer some love.
They can use all the prayers we can give.
They deserve a miracle.
cancer sucks.

Friday, August 21, 2009

Bliss, I tell you.. absolute bliss.

I've never really posted about it, I guess because it's never been a blogland issue. But the fact of the matter is that after V was born I had to leave my job, we had no family capable of helping with childcare, and daycare germs were a definite no no.
So, after he was born, living on one income, we moved from our spacious 3 bedroom 2 bath home into an apartment. It was an adjustment, but we made it.
Then, thanks to an unforgiving economy, Carmen lost his job of 10 years and we were forced to give up the apartment.
Ever since then we have been existing, as a family of 8, in a 26 foot motor home.
Not exactly what one dreams of as they grow older in life, but better than a tent in someone's backyard, right?

(I try to look on the bright side and remember how many people nowadays really ARE living in tents, and worse)

Needless to say, between all of us and all of Vincentio's medical equipment, things get a bit cramped and more than a bit noisy around here.
But right now, at 12:38 am, everyone (except the dog) is sleeping peacefully.
I have to say that as much as I love the bustle of my children's lives, THIS is bliss.
Sheer and absolute quiet. Doing not a single solitary thing other than making the perfect cup of coffee to enjoy in my perfect quiet little house.

... and dreaming of the day that my "perfect quiet little house" won't be on wheels anymore.

sweet dreams :)

Wednesday, August 19, 2009

The Ties That Bind...

I've recently read some very heartfelt posts that my blogging friends have written regarding their connections to the Down Syndrome community.

For those of you who have read my most recent posts (ok, novels) about Vincentio's story, you know most of it already.

Still, I felt as though I needed to add a post to the topic.

You already know how V entered our lives.. with a bang.

We had no idea that he had DS, or any other congenital issue for that matter.

We were blessed from the very start that he was born in a hospital that was equipped to handle his delicate heart. They were so very supportive. Too much sometimes, every time I thought I had it together, they made me cry all over again.

The strange thing was that I wasn't crying because my son had Down Syndrome.

I was crying because I was scared to death that he might die.

You see, V was a preemie. Tiny and frail. His heart was damaged, his lungs were damaged. Something wasn't right with his blood.

The people that surrounded us those first hours, days, weeks, were amazing folks indeed.

They kept him alive, they kept us going, they gave us hope.

But somehow it always came back around to "how are you adjusting?"

Don't get me wrong, I was grateful for their consern and caring. It's just that I wasn't worried about how he was going to grow up and how we were going to deal with raising a child with Down Syndrome.

I was worried about whether or not he would live at all.

I was worried that I would never GET the chance to raise my child with Down Syndrome.

I guess the fact that he was so sick from the beginning gave me a different perspective.

I specifically remember a day when I sat in the NICU trying and failing once again to feed my son. Asking the nurse to hook up the feeding to his NG because it just wasn't happening. I felt defeated in that moment. Like there were just too many obstacles. That maybe it was just too much.

As I sat there, rocking V, a group of doctors came to give discharge instructions to a young couple a few beds down. I remember that they were very young. 19 or 20 maybe. This boy was there first child. He was big, much bigger than most of the babies in the unit. I could never quite understand why he was there at all. He seemed so normal.

The docs stood there, counseling the parents on how there son's care would work once he was discharged. Turns out he had Cystic Fibrosis. He would require weekly clinic visits, multiple daily meds and therapy. They told this young couple that it was in their best interest to not have any more children, that CF was genetic and they could pass it on. That more than likely he would, due to the severity in his case, be hospitalized often. More than likely he would need a double lung transplant within 3 to 5 years, and even then he would only live into his 20's.. if he was lucky.

How's that for a kick in the teeth. Your first and only child is going to live a miserable life and then die way too young.

I decided then and there that I could live with Down Syndrome.

Not only live with it, but be absolutely grateful for it.

If they could fix his heart, heal his lungs, make him well.. all the rest was cake.

Down Syndrome wasn't just something I could live with.

Most importantly, it was something that HE could live with.

That was all that mattered, that's all that has ever mattered.

Sunday, August 16, 2009

We Were So Close

So Dr.B (GI) and I spoke about a week ago. He was interested in my opinion as to whether I felt that V's stoma would tighten up around the GJ tube. Ultimately he wants to get him back on gastric feeds like before.

I told him that V is definitely putting on weight which is great. That was a major struggle up till now. His skin is also looking better than it has in months.

However... that naughty stoma just WILL NOT seem to close.

In my opinion, I think that he is going to need a surgical revision. This stoma is not going to close. So if it's going to have to happen, we might as well get it done while he's healthy and infection free. He agreed and told me to call Dr.P (surgeon) to get him scheduled.

We have a consult scheduled for August 24th to get the surgery scheduled.

Then this morning... "IT" happened.

For once the kids slept in, I was in bliss. My five year old, Ryan woke me up around 9:45am because he wanted breakfast.

I got up to fix it and when I walked by V's bed I saw it. Bile, soaked all into his shirt.

At first I cursed the old standby, the med port. It must have opened when he rolled over.

But the med port was closed.

Wait a minute.. this tubing is way longer than it should be... Aaaahhhh!

The whole stinking button, J tube and all was pulled out and curled inside his onesie!

... OH ... MY ...GOD!

So we made it to the ER at about 12:30pm.

He was in the OR by 2:45pm.

We were on our way home by 5:00pm.

Not too bad, we made it home in time for Sunday dinner. If nothing else good came out of today, surgery was able to get a hold of a shorter GJ this time so he has one in that actually fits now.

We were so close. So close to getting this resolved without any real drama.

That would have been a first. Oh well, what would our lives be like with no drama?

Friday, August 14, 2009

Vincentio's Story / The Meaning Of It All

So I'm back with the continuation of our story as promised. It's been so many days now since I've left off.

I'll try to make this novel of mine a bit more concise since I'm basically exhausted. There are a few aspects of life here on the farm that are unknown to most, simply because some family business just isn't fit for public consumption.

Mostly because I like you all, and I wouldn't subject anyone I really liked to it.

Ugh, needless to say, I'm tired.

So... where to begin?

When I left off we had just been told of V's "mass" at the base of his right lung.

The doctor arrived shortly after my brief and unpleasant exchange with the nurse to let us know that he really didn't know what it was. A CT scan was ordered for confirmation.

The CT showed that this "mass" was in fact, my son's intestines and liver inside his chest. It was filling most of the right thoracic space and collapsing his lung.

Theory is, that he had a Morgagni congenital diaphragmatic hernia at birth, but the defect didn't fully open until some time after his open heart surgery. From the stress of having such severe RSV.

It needed to be repaired ASAP, but after such a severe case of RSV, anesthesia is out of the question for at least six weeks. So we brought him home on a full 2 liters of O2 and more monitors than I care to remember.

It was like walking on eggshells. I don't think I slept much that month but we made it. During presurgery testing they also found a blockage in his duodenum that would have to be opened.

The day of surgery I was nervous of course, but I thought if we made it through open heart, we could get through this. I had no idea what we were in for.

After the procedure, all 3 surgeons involved took us into a side room and layed out a number of photos. They were pictures of Vincentio's insides. The defect in his diaphragm was huge. You could look up through the hole and visualize his heart and both lungs. The surgeons all commented that they had never seen a child with such a large diaphragmatic hernia live for so long that way.

They asked for permission to use V's surgery photos for medical research.

The recovery part was truly nightmarish. His scar extended from the middle of his chest (they reopened part of the open heart scar) down to his belly button.

In the short time it took to move him from recovery down to ICU he was crying in pain. He was given more morphine, but before report was finished to the ICU staff he was in pain again. His dose was increased. During that first night, his morphine was increased two more times and fentanyl was added as well.

His chest tube to reinflate his lung was really big and obviously uncomfortable, after four days it was decided that the tube could be removed. Not long after, his O2 sats began dropping rapidly. An x-ray showed a pneumothorax had occured and there was a fair amount of air surrounding the outside of his lung. If it wasn't addressed the lung would collapse again.

There was talk of reinserting the tube but one of the docs had heard of using high flow O2 to help the body reabsorb the air. We decided to try and he was placed on 10 liters by mask. This stayed on for a total of 14 hours.

Vincentio is an avid thumbsucker, so he was NOT a happy camper during the whole thing. To avoid another chest tube, I became "super entertaining keep your mind off your thumb and keep your mask on mommy" for a really long time. It worked though, after 14 hours my man's lung was good to go.

He was finally discharged home after 11 days. The first couple days home we uneventful, then on the third I noticed what appeared to be a string in the center part of his incision. I figured it was a leftover stitch that would dissolve.

Within a couple more days the area around the stitch looked to be opening. To my absolute horror, I realized his incision was opening and we were seeing the subcutaneous layer of sutures.
.... gasp....

Dr.P saw us pretty quick and when he used a scalpel to cut the stitch hanging out, he knicked the skin and a gush that looked something like guacamole came shooting out of the openeing. V had a pocket of infection under the skin that had caused it to open. Dr.P had to open the whole center of the incision to drain it then he packed it and sent us home.

We have to do what???

For nearly a month we had to clean this hugh hole in his belly and repack it twice a day. Finally, after several weeks it was closed enough to simply bandage over, then after six or so weeks it closed completely. To this day it's not an attractive scar, but it reminds me of just how strong he really is.

I know grown men who would be brought to their knees by that kind of pain on a daily basis.

During the repair Dr.P fixed the hole in his diaphragm, pulled his intestines out and replaced them side by side (Ladd procedure) to correct a malrotation from being in the chest for so long. He pulled his liver back into place as well and reinflated his right lung. The blockage in the duodenum couldn't be opened so a bypass was performed there.

That is what causes V's "stomach" issues to this day. He eventually required a Nissen Fundoplication for intractable vomiting and a G tube for "failure to thrive". Many heart babies have trouble putting on weight, but V's intestines were also traumatized and they don't seem to absorb nutrients as well now.

You all know the rest of tha G tube "drama" that has followed.

Since his GJ placement in July, he's gained several pounds and actually looks almost chunky for the first time in nearly four years! His skin looks good too, but due to some other factors Dr.P doesn't think his stoma site is viable anymore, so on August 24th we'll have a consult to schedule a revision.
That's Vincentio's story so far, far from over. It's not just a Down Syndrome thing. It's a Congenital Heart Disease thing, a Congenital Diaphragmatic Hernia thing, a G Tube thing, a "failure to thrive" but I'm Still A Survivor thing, and more than anything...
It's a story of how one little boys strength can bring an aching family together and make them whole again.
He's really something, so keep watching, keep reading, keep enjoying life with us. There's surely lots more exciting stuff to come!

Thursday, August 13, 2009


To follow yesterday's post..

No leukemia for Miss Zoey. She is officially still in remission.

Damn God is good.

stay tuned....

Wednesday, August 12, 2009

Storming the Gates...

This is a bit of a sidetrack to my current "life story" expose of late, but it's a very important one. Those of you who have read my older posts know how I feel about childhood cancer.

(insert expletive)

One of our new friends is in need of some serious, hard core prayers today. Zoey Grace Needham is a super sweet little bucket of love I've had the priveledge to follow recently. She's a fellow Ds darling who also happens to have battled AML leukemia. She recently completed 6 grueling months of chemotherapy in her trademark style. Now after just barely being able to return to a happy, cancer free life she is once again undergoing a bone marrow biopsy today (WEDNESDAY) to see if her cancer has relapsed.

How I hate the "R" word.. in all it's forms.

Please stop by her blog "Little" and experience the wonder for yourself. Leave Zoey and her family some words of encouragement and please, please pray that Miss Zoey is still cancer free!

Friday, August 7, 2009

Vincentio's Story / The Continuing Journey

V's open heart surgery took around 6 hours to complete and when we were called back to the cardiac intensive care unit we were incredibly relieved. His repair was successful. He was lying naked in a tiny bed covered by a warming light. His nurse was waiting in the room as we arrived to help explain what we were seeing. Although I did have some extensive experience working in a hospital, seeing all that equipment on your own child is just completely different.

The nurse calmly explained every tube and wire, beginning on his head and working toward his feet. He was kind and took all the time we needed to be comfortable with what we saw on our son. We were advised that the bone marrow sample was collected and that testing would take about two weeks.

He would remain in the CICU to recover for as long as he needed to be free of all equipment and major pain meds. They also wanted to see him tolerating feedings well too. They said it would probably be around ten days.

The CICU staff was wonderful, not that the others in the hospital weren't but up until now so much emphasis had been placed on helping us "adjust" to our son's genetic diagnosis. Strangely enough I was never sad or angry. I never once had a "why my child?" moment. He was just my son. Whatever package he came in, I was elated to have him.

Don't misunderstand, I know everyone handles these things in their own way, and they are entitled to their feelings. It's a natural process and there's no right or wrong way to go about it. But so many people were focused on the down syndrome that I began to get angry that they weren't more focused on his health. If you want to feel sorry, feel sorry that his heart is sick, feel sorry that he can't breath well enough to even eat. Feel sorry that at 5lbs he has to have his chest cut open and his heart stopped and there's a very real chance that he won't survive it all. Feel sorry for what might kill him, not for what he has to live with. As far as we were conserned down syndrome was something we could deal with, losing our son was not.

.... back to the story....

I was stunned and really impressed that he was off the ventilator that same day. He was off morphine and fentanyl within two days. The third day he was eating well and only requiring tylenol for pain. He was a different child. Born again.

That night I felt comfortable going home to sleep for once and the next morning I awoke to a phone call from the CICU that V was being discharged! Are you sure you're talking about MY son? He only had major open heart surgery four days ago!

Yes, he had successfully met all the required milestones and was exceeding them! He was ready to go!


Seriously.. later that evening, day four of recovery, our baby was home. He was warm and pink, he was breathing (without sounding like he had a chest full of gravel), and most amazing of all. He was awake and hungry.

We were still very nervous about the impending bone marrow results but each day that passed without word made me a little more secure that things were going to be alright.

Around ten days later we received word from the hospital that his bone marrow was clear. Once again this mysterious blood issue has resolved itself. They were referring to it as "transient leukemia", which is when the blood differential appears to be leukemic but resolves without treatment.

We were advised that childern with Ds were more likely to develope leukemia and those with "transient leukemia" were at a much greater risk.

Something we would need to watch and be prepared to deal with in the future if necessary.

Unnerving to say the least, but I was happy to have him home and healthy.

This was November. For several months Vincentio thrived, it was an absolutely amazing transformation, he was so alive in every sense of the word.

By January 2006 we began to see some disturbing changes starting to happen. V still had a hearty appetite, but now most everything he ate came back up. His breathing was also not as easy as it was before.

Dr. D was quick to check for the return of CHF and impaired heart function but this was not the case. She referred us to a pediatric surgeon due to the fact that it wasn't a cardiac issue. Plus, he had developed what appeared to be a bulging hernia at the base of his chest incision.

The surgeon (DR.P) said that the hernia looked to be simply a cosmetic issue from tissue not closing properly after surgery and he would prefer to close it when V was older. After several tests he also diagnosed the vomiting and breathing problems as being reflux related and V began acid reducers and a motility medication.

Aside from alot of puke and ruined clothes, he was holding his own until later that summer. In the summer he caught what seemed to be a bad chest cold that would not let up. After a visit to his pediatrician who found his O2 saturation to be only 86% after two breathing treatments, we were sent to the ER. He was given more nebulizer treatments and several tests. They came back showing that V had RSV. He had his last synagis shot only two months before and it was decided they were no longer needed. They were wrong.

He spent 10 days in the hospital and after the RSV tests came back negative we still could not get him off oxygen. Clinically he was getting much better but he still required a full 2 liters of O2 to keep his sats up. It was decided that he would be discarged with O2 at home. Before the discharge could be processed he had to have a chest x-ray to confirm that the RSV was gone.

We weren't overly worried until I walked by the nurses station and was stopped. His nurse told me that he would not be getting discharged anytime soon. Of course I asked what had changed and she said that she couldn't tell me anything more until the doctor came in.

That was the wrong answer...

Needless to say, after some not so subtle threatening, she advised me that all she could do was read me tha progress note in his chart. It stated that his chest x-ray showed "an enormous mass" at the base of his right lung.

Me: "What does that mean??"

Nurse: "I'm sorry I can't say any more, you're going to have to wait for the doctor."

Me: "What???"

Nurse: "I wish I could tell you more but I really don't know."

Please stay tuned for the next exciting chapter in the life of my littlest love ......
To Heather, I would be honored to have you steal one of my quotes. After all, it was inspired by one of the strongest little men I've ever known.

Thursday, August 6, 2009

Vincentio's story / The Saga Continues

After the paramedics arrived and stabilized V he was transported to the nearest hospital which wasn't exactly used to handling children. They were great about making sure he was comfortable and his vitals remained stable. They did perform a series of chest x rays which showed his heart to be enlarged and fluid in his lungs. The ER doctor was fairly confident that he was suffering from pneumonia and began IV antibiotics.

Soon after they called Arnold Palmer and requested that he be transported by their mobile ICU as soon as possible. Unfortunately, there was only one vehicle at that time and it was all they way in North Florida on another emergency. We were told that it would most likely be several hours and for the ER to call again if his condition began to deteriorate.

After six LONG hours he was finally transported and he was directly admitted to the pediatric intensive care unit. The PICU allowed us back with him after about 30 minutes and the doc was waiting to explain the reality of what had happened.

V was in fact in massive congestive heart failure. His heart was very enlarged, his liver and lungs were full of fluid. He commented several times that we were very lucky that this happened during the daytime when we were able to see it . If it had occured at night he probably would have passed away while we slept.

After a week in PICU and with many new meds on board, we were discharged home and advised to see his cardiologist within the next two days.

Dr. D (our cardiologist) had us in the next morning and rechecked his weight and vitals. Even with some residual fluid still in his organs he was weighing in at 5lbs 8oz. Much smaller and younger at barely 5 weeks old than she had wanted him before surgery.
She upped his dose of digoxin and lasix and told us to return in one week for a follow up.

At our next appointment it was determined that his lungs and liver were not responding well, despite the meds V was still struggling. His weight was down to 5lbs 3 1/2oz and he wasn't breathing or eating well. She increased the digoxin again, to the maximum allowable dosage, and increased the lasix plus added another diuretic as well. She told us that his meds were now maxed out and the next weeks follow up would be the deciding factor as to how we would proceed.

That next week his weight was down again to 5lbs even. His breathing was extremely labored and his color was worsening by the day. As soon as Dr. D entered the exam room she turned around and left again. Moments later she returned to tell me that she had called for the mobile ICU for transport to the hospital again. She said he would be admitted to PICU again and would spend the next several days being stabilized for surgery. Doing it now was definitely more risky but we had no choice, he was dying.

Four days later, after many, many IV meds and tube feedings to help him gain some strength, he had his heart repair. It was November 8, 2005 and he was 7 weeks old.

The day before surgery he had many blood tests done due to the fact that he would require transfusions and to prepare for the surgery in general. The morning of the procedure Dr.D approached us about signing a form allowing a bone marrow aspiration to be taken from his sternum when it was opened.
His blood differential was again way out of whack and they were beginning to question the possible onset of leukemia.

We agreed and he was carried away to surgery a few moments later. We were stunned and numb somehow all at the same time.

More to come...

Tuesday, August 4, 2009

Vincentio's Story / Part Deux...

Little man was in the special care nursery for the first three days of his life and I was safely tucked in my bed on the OB floor attached to my sweet pump - o - pain reliever. By the second day I did realize that as good as morphine is, it makes me itch, and with a belly full of staples incessant scratching really isn't a desireable afteraffect. So.. bring on the benadryl.

To say the least I was doped. It's due to this fact that my first few days as a Down Syndrome Mommy were spent babbling aimlessly as my friends sat vigil at my bedside. I'm told I was pretty funny though.

On the second day I was wheeled down to the special care nursery to see my bundle of love up close and personal for the very first time. He was so beautiful from what I was able to see of him, all swaddled from head to toe.

He was tiny but at 4 pounds everyone was impressed at his size for being a preemie. At this point in time he was relatively tube free other than the NG for feeding. I was told that he had not yet developed a sucking reflex so I was encouraged to pump milk for him that he could be tube fed.

The staff in the nursery was wonderful, they were understanding and kind. They even made me cry a time or two. I couldn't have asked for better people to be surrounded by. I was lucky and I knew it.

On day four I was finally sprung and released to go home.. without my baby. Even though he was basically stable at that time, leaving without him was harder than I thought it would be.

That night at home I didn't sleep. How was I supposed to sleep without him? For over seven months we had slept together and it wasn't right that we were apart.

The next morning we awoke to a very calm phone call from the hospital letting us know that V had been moved during the night. He was now in the neonatal intensive care unit. Sometime during the night time he had become very pale and his breathing had become labored. He was quickly moved up to the NICU, blood cultures were taken, and he was started on oxygen. We were told he had stabilized and was sleeping peacefully.

... holy crap...

We quickly made our way into the NICU to check on our boy and found him sleeping soundly with his newly aquired O2 and more than a couple needle stick marks. Poor baby.

The neonatologist was in shortly after to tell us that he was not in congestive heart failure as they had feared, the blood cultures came back showing no infection but it did show some unusual types of cells in his blood, not the number of cells but the type. He assured us that they would recheck it in a couple of days and not to worry.

My next several days were spent trying to master the industrial strength breast pump that the hospital had graciously offered us to borrow. This was a feat. My other children were champion nursers. This plastic sucker was a tough one. It wasn't overly difficult to operate but just somehow really uninspiring. Achieving let-down was no easy task. The nursing staff was sweet, happy even for a few drops. "Any little bit works wonders" I was told.

Still, I felt massively inadequate, but I kept at it.

A few days later during our daily visit I excused myself to visit the "rose room", a quiet room solely reserved for pumping mothers. There was only one other Mom in the room who happened to be a hospital employee. She was pumping for her eight month old at home and it was obvious she has NO problem with her milk production. I sat meekly pumping away trying to distract myself but the sight of her gushing into that bottle was too much to resist. Apparently it was just what I needed, after a few moments I felt the let-down of my milk for the first time ever and emerged victorious from that room sporting TWO full volu - feed bottles. Even my husband was impressed.

Later that week V had another "episode" requiring O2 and stat blood cultures, and again his cell differential was a consern. Within two days they were testing normal again like the time before. I would later realize this was just the start of his normal abnormal.

These episodes continued throughout his stay in the NICU but his differential always reverted to normal within a few days without intervention. Imagine that, my kiddo was doing something medically strange and out of the ordinary.

He remained in the NICU for a total of four weeks, until he was able to have his NG removed and was able to take all his feedings by mouth. He already met the 4 lb weight requirement so feeding was our only real obstacle. He began to take full feeds by mouth on a Wednesday and on that Friday another ECHO was done to check his heart function and it was surprisingly good. We were told that if this trend continued we could have him home by the following week. Yipee!

We were quickly scheduled for infant CPR classes that would be a requirement for his discharge and had all of his prescriptions filled and ready. We would have to bring them to the hospital and show the nurses that they were filled accurately and we were able to dose them correctly before we were allowed to leave with him.

V was given a six hour car seat test where the baby is placed in the car seat and hooked to a pulse ox for several hours to be sure that they can maintain proper O2 levels while being transported. He passed! Woohoo!

Discharge day finally arrived the next Monday and it only took us ALL afternoon to get out of there but they were thorough. Can't argue about that.

The neonatologist mentioned that he hadn't eaten as well the night before but it was probably a fluke, they offered to keep him another day but I was ready and we were outta there.

When we arrived home he was just as they said he would be.. very sleepy. We were given an eating goal of 15ml's every three hours. We had to stick to it and if he wasn't cooperative we had to return to the hospital. The next two days were spent creating strategies to wake him up so that he would eat. What we were so sure we could handle (after all it's only 1/2 an ounce every few hours) was quickly kicking our butts.

I finally found that if I undressed him and rubbed a cool cloth over him he would get mad enough to wake up and eat a little. It worked but he always pooped out before the 15ml goal was reached.

On day three he was sleeping when we woke up and since his feeding wasn't due yet we decided to head for the grocery store for some breakfast goodies. It was just down the street and would only take a few minutes, so off we went with our little bundle covered up and secured like Fort Knox.

No germ would penetrate my fortress. We got more than a few strange looks but I've never been one to care much what other people think. I was ready to protect my munchkin at all costs.. and so we shopped.

About 20 minutes later we got back home and as I was unloading our groceries Daddy was trying and failing to wake V for his next feeding.

I told him to try the naughty washcloth trick which he did. It didn't work.

What? It always works, not always very well, but it always gets him mad.

Well not this time. I walked over ready to scold Daddy for not doing it as well as I do when I noticed something was different. V's eyes were still closed but they were rimmed in an ashy shade of gray. So were his lips.

Daddy was convinced it was bad lighting so he carried V over to the window and took off his onesie in an attempt to arouse him. When he undressed V I just about lost it. His entire back was mottled and his skin was a deep shade of purple. As Daddy carried him and rubbed his back it was obvious that his breathing was slowing, and came in awkward sharp motions. I called 911.

It was Wednesday, only two days after they told us his heart was functioning well. Only two days since we began our journey as a complete family all together, and I was watching Daddy do CPR on my love as he laid on the coffee table in our livingroom.

Stay tuned.. more to come...

How Did You Know???

I find myself in these past couple of weeks looking for exciting blogging goodies as our usual medical fiasco's have taken a sudden turn for the boring.

I've read many blogs of parents with Ds kids and how they first found out, and so I figured I would share my own experience.

My pregnancy with V was very unexpected to say the least.
All of my pregnancies were very unexpected, so nothing new.
My Mom used to call me "fertile Myrtle".

Anyway, all of my pregnancies have been considered "high risk" from the start due to the fact that I suffer from systemic lupus. So through them all I was poked and prodded, ultrasounded to the extreme, and generally under super human scrutiny.

Aside from some expected kidney issues and my blood platelets hovering near the critical range (the unfortunate norm for me), my last pregnancy was really my most unevenful.

I had all of the standard screening blood tests and nothing ever came back out of the ordinary. During one of my many ultrasounds his arm length showed a tiny bit short but I was told that even a few days off on the conception date could account for that, so no worries.

All was hunky dorey until my 32nd week when I showed up for work and within an hour, I knew something wasn't right.
I'd had braxton hicks contractions before and this wasn't it.
The pain was deep in my back, I had premature labor with all my kids (another gift from the lupus) but was able to control it with meds and bedrest until near term.
I wasn't panicked, I was even a bit shocked that I hadn't felt it before now.
I had to inform my boss who immediately pulled her car around to the front of the building and advised me that we were heading to the hospital NOW. I didn't argue.
She helped get me admitted and called my husband to let him know.

The nurses knew in pretty short order that I had done this in the past and we started the usual IV meds to put a stop to the contractions. It worked, and fast. Within an hour I was contraction free. They decided to monitor me for a few more hours and would then send me home to vegitate for a at least another month or more hopefully.

At around 11pm a nurse informed me that the OB doc had written my discharge orders and I was free to go.. are you kidding me???
You want my husband to wake up three little kids and come pick me up at 11:00 at night??

They took mercy on us and since the floor was pretty quiet they said I could rest for the night and he could pick me up in the morning.

Somewhere around 1am I woke up for my first trip of the night to pee.
When I was finished I stood up and suddenly felt a gush.
HOLY CRAP! I knew what that was, but in true me fashion I grabbed a towel and cleaned up my puddle before calling the nurse.
First she asked if I was certain that it wasn't urine, and then scolded me laughingly for cleaning the whole thing up since thay couldn't use my puddle to strip test for amniotic fluid.

I obliged her need and lost a little more right there in the bed.. how's that for service. I do aim to please.

Of course it was positive and since they were not prepared to handle a potential preemie delivery, I was redlighted downtown to Arnold Palmer women and childern's hospital.

During my initial admission they weren't overly conscerned, they even thought they might be able to hold me off for a while... NOT.

After more than a few failed attempts to stop my labor they realized that this baby was coming and they'd better get ready.

Moments later, as I was moved to a delivery suite, V's heart rate began to dip dangerously low with each contraction. The doc figured it to be stress from the contractions and wanted to try to replenish my amniotic fluid to give him some more cushion. An IV tube (without the needle) was gently threaded up into my uterus and each time I contracted and lost fluid, they pushed some back in. Sounded good, even worked some times. Not for me.

Still more decels in his heart rate so they decided to add a scalp monitor to the mix to get a better reading. Hint: It doesn't go on MY scalp.
One more piece of wiring up my @&$^. Needless to say I was uncomfortable. To make matters worse, I was advised that any pain meds would lower his heart rate even more so thay would not be allowed. An epidural was also out of the question in my case due to my lack of blood platelets and my low clotting factor. Yay!

A short time later they realized the situation was progressively getting worse and a C-section was going to be needed. I was given an injection to stop my contractions since there was no need to have them at this point.
It didn't work, and neither did the second one. By now I had gone from extreme discomfort to downright screaming pain.

Thank God they were able to get a surgical room quickly and gave me the gas. I've never been so happy to have a big black mask on my face EVER.

Sometime later I remember a brief passing in the hall and touching V's little hand, but I was blessedly drugged up. They had to do an "old fashioned" C-section (midline) incision instead of a small bikini line cut due to bleeding issues and I was left with quite the impressive scar and 15 staples holding my gut together.

Whoever inveted the morphine PCA pump is going to heaven. That's all I have to say about that.

The next morning I awoke in my drug induced fog to one doctor after another arriving to "prepare" me for what had taken place.
Apparently the signs of Ds were fairly apparent at birth so the array of necessary testing had already been done.

The geneticist came to tell us why she felt he needed to be tested. Outward appearance, low muscle tone, and the single crease across one palm. She said he didn't possess all the possible traits, but enough to warrant a blood test. We half heartedly agreed due to the fact that our third son also had the single palmar crease at birth and is totally "normal". She agreed that was unusual but insisted on the test anyway.

Next came the cardiologist. She was amazing. She explained that she had already done extensive echocardiograms and they all showed and ENORMOUS VSD. It was located in a odd position behind a major valve and that was the only thing slowing the shunt of blood between the ventricles. Therefore he was not currently in heart failure but he would be before too long. She calmly went over all the synptoms of CHF that we would begin to see and how to handle them. She was hopeful that with proper medication and treatment we could hold off surgery until he reached at least 10 pounds in weight and four months old. He was currently 4lbs.
She explained that at 10 lbs the mortality rate for the surgical repair he would need drops drastically, and at four months of age the brain is better developed and can more easily handle heart-lung bypass. So, that was our goal.

Stay tuned for part 2...