Monday, January 30, 2012

1st Morning at Home

We left the hospital at about 5pm, yesterday.  Josiah seemed to know he was going home.  As he was wheeled out in his stroller, he was fascinated looking around.  In his car seat, he fell asleep quickly and slept until we reached home.

Jesse (the oldest) was watching out the window when we arrived home.  We were met by both boys as we came up our staircase.  The boys were happy to see Mama.  They were happy to see their baby brother.  I showed Jesse Josiah's 'zipper' (aka scar, as Daddy calls it). 

Josiah ate well and fell asleep around 9pm.  He proved happy to be home; he slept until 6am.

Josiah's voice seems stronger than ever.  He is eating well; he even burps after feeds (something he never did before).  He looks great.

We have to schedule another sedated echo cardiogram for later in the week, just to be sure the surgery 'stuck'.  We have every reason to believe that it did :)   In a week or so, we fill follow-up with the pediatrician.  It was fun reading Josiah's discharge papers.  They suggest a child who used to have heart disease (past tense).  They suggest a child lacking a heart murmur (what a great thing!).  Josiah's labs were perfect, all numbers falling within normal limits.  They suggest a child with a history of failure to thrive (which we do not anticipate to be a continued problem).  They suggest a child who's broken heart was made whole.  What a miracle <3.

I had fun playing with the other boys last night.  They were both pleased to have Mama sing and read to them before bed.  Our night-time routine was back; normalcy had been returned. 

The week continues as normal.  James's EI worker will come to play with him this morning (something he greatly enjoys).  Jesse's back to preschool (and pleased about it).  We will take the younger boys to playgroup later in the week.

It's nice to be home.  Everything just feels right :)

Sunday, January 29, 2012

Going Home

Josiah woke at 1am for a weight check and feeding.  He's weighing in at 3.14k (down from 3.15 the night before).  Then he slept until 7am.  We woke to confirmation of today's planned discharge.  Carl is coming at 3pm to take us home.

Josiah had several feedings this morning, as well as a bath.  His final labs came back perfect.  He is healthy.  He is strong. 

I've returned a borrowed movie.  I will return this borrowed computer soon.  Our bags are packed.  We are ready to go home.  Josiah is enjoying his last nap here.

I reflect on the last week and I am amazed at where we stand now.  I am amazed at Josiah's strength.  I am in awe of our little heart hero.  I am star-struck over his determination and bravery.  What has transpired is nothing more than a miracle (and a whole lot of skill).  They have given us back our son.  I am thankful for everything the doctors have done.  I am thankful for broken hearts made whole.  I am thankful for a wonderful family, support network, and friends.

All the while, I can't ignore what we were not faced with.  My heart breaks for the children who don't go home.  I shed tears for the car seats that leave empty.  I am saddened by the empty cribs unable to embrace the children they were assembled for.  For so many, it is not the happy ending we are living.  For those, my prayers are with you.

I will never forget how precious life is.  I shall never take for granted the miracles we have been blessed with. 

Climbing Up the Down Staircase is an incredible journey!  For that, we are so fortunate.

Saturday, January 28, 2012

72 Hours Post Surgery

Josiah had another great night.  He woke up twice for feedings (1am & 4:30am).  In addition to overnight feeds, he got another EKG, was weighed (4.19k), had a sponge bath, and his oxygen was removed.  After his busy night, he slept until 9am.

I am amazed by this little boy.  He looks incredible.  He is alert; his eyes are bright.  He somehow appears stronger. 

This morning, I was able to take him for a walk to radiology where he received a chest x-ray.  He did very well.  Then, he accompanied Mama down to the cafeteria for breakfast.  Afterwards, he had labs drawn and his pacing wires were removed.  Nothing is left except the simple heart and oxygenation monitors. 

Carl came to visit today.  Josiah was happy to see Daddy.  At 2:30pm, we took Josiah for another walk to the cafeteria for lunch.  Josiah enjoyed the change of scenery.  He fell asleep on the way back to the room.

Josiah has continued to eat well, which makes this Mama very happy.

Josiah is sleeping now.  Carl will be leaving for home soon.  I want to go home.  I want to take Josiah home.  I'm growing frustrated.  I miss the boys.  I can't wait to go home <3

Friday, January 27, 2012

48 Hours Post Surgery

Josiah's progress continues to be remarkable :)
Josiah slept until almost 9am.  Upon waking up, his central line was removed, he got a chest x-ray, and nursed again.  He is such an amazing little man.  The chest x-ray results were wonderful.....everything looks great!  He was quickly transferred out of ICU and into the regular cardiac unit. 

The surgeon (Dr. E) stopped by and marveled at how well Josiah is doing.  He would like Josiah to have another sedated echo cardiogram to confirm that everything is well (which they believe to be true).  The nurse practitioner scheduled one for Monday morning, but the surgeon is saying that we will likely be discharged home before Monday a.m. - OMG, what great news!!!!  That will simply require a trip back later next week for the echo (as an outpatient).  I couldn't be more thrilled.

The cardiologist (Dr. P) stopped by and, also, marveled at how well Josiah is doing.  He, too, suggested we should be discharged home over the weekend.  We talked about the surgery success.  As we had already been told, Josiah's VSD was larger than expected.  He also had 5-6 ASD's.  All holes were successfully repaired.  Josiah also had a leaky valve, which we hadn't been told (it matters not, really).  That, too, was repaired successfully.  The cardiologist listened to Josiah's heart and chuckled stating, "He sounds great; you would never know that he used to have heart disease."  Those are words a mother loves to hear :)

Josiah's is just now getting a Synagis shot.  When I was first told that he was going to get one, I questioned it as Josiah had his first Synagis shot last week and is not due again until mid-February.  Then I learned something new.  Synagis is wiped out with bypass.  Therefore, he hasn't had any in his system since Wednesday.  Who knew???  LOL.  We'll update the Synagis schedule with the pedi, and he will get his last two doses there.  The cardiologist said it isn't necessary as "Josiah is no longer a high-risk baby."  (Again, great words to hear).  But, since he just had surgery, the cardiologist agreed to smart to follow-through with the next two doses to cover the 6-8 weeks post-op. 

Carl stayed home with the older boys today (ages 2 & 5).  They were picked up from my parents house last night.  I think the boys were happy to be home because neither of them got out of bed until 1pm today LOL!!!  I miss the boys.  I miss Carl.  I miss my sister (who also lives with us).  I'm looking forward to bringing Josiah home.  I miss home <3

It's time to feed Josiah.  Then it's time to feed Mama :)

More updates to come <3

Late Night Update

Josiah has continued to progress in, what seems like, an unprecedented fashion :)

After his afternoon nap, he was allowed to nurse for the first time since prior to surgery.  He did GREAT!  He's back to his every four hours feeding routine.  The arterial line has been removed as well as several IVs.  He continues to receive medication to prevent blood-clots and a diuretic.  He's also receiving high blood pressure medication.  The surgeon explained that Josiah's heart has been essentially bench pressing 150lbs (due to the holes).  The holes are gone, yet the heart hasn't learned that it no longer needs to pump with such aggression.  The discrepancy causes his blood pressure to be high....this will improve with time.  Although he may be sent home on medication, the belief is that it will all be short-term medication.  That is such good news.

Tomorrow, Josiah's central line will be removed and he will be moved OUT OF ICU.  It's amazing how well he is doing.

While feeding him this evening, a 'code blue' was called on the unit.  The dichotomy of emotion was strange.  On the one hand, my heart poured out to the child/family who was being affected; the other half of me was thankful that it wasn't my child/family.  Some time later, I was leaving the unit to take a walk.  I used the same hallway I'd used so many times before.  I quickly came across a swarm of staff members who redirected me to a different exit.  They were in front of a room who was housed by a little boy.  I remember (previously) thinking that this child had been here awhile as the window to his room was decorated with large posters, his name, cut out snowflakes, etc.  I will simply refer to him as "W."  As I exited the unit, I walked by a small consult room.  There were two staff members talking to a young woman (who was crying).  I heard one staff member say, "We'll take everything off, clean him up, and you can spend as much time as you need."  I inwardly gasped for air.  She had just lost her little man.  How absolutely terrifying and tragic.  I keep thinking of that little boy and hope he is resting peacefully with the angels in Heaven.  Sweet eternal dreams little W.

Tonight, I learned that a dear friend had a heart attack.  He's young.  Thank God, he's ok.  It shows you that you just never know.  Always remember to hold your loved ones close & tell them you love them, often.  Hold on to the good; let go of the bad.  Harbor forgiveness, not resentment.  Be thankful, not bitter.  Enjoy every minute you're given.

It's late and I should nap.  Tomorrow, we continue our own amazing journey.  I can't wait!!!

Until then, my friends.....

Thursday, January 26, 2012

Afternoon Update

I can't believe how far we have come in the last 30 hours.  Josiah never ceases to amaze me.

Josiah remains stable and is doing great!  He continues to sleep most of the time lol.

As promised, the catheter and chest tube have been removed.  The tape/monitors across his forehead have been removed.  The breathing machine is on "support mode" which means Josiah is breathing ON HIS OWN!  What's funny is that his numbers are looking better OFF the machine than they did ON the machine (hahahaha!).  Josiah is asserting his need for independence....just like his brothers :).

He's waking right back.

Ok. It's 30 minutes later and we've made more progress.  Josiah woke up.  They've removed the tube from his mouth.  They've removed the breathing tube completely!  That's a huge step.  He made a few vocalizations but they remain very weak.  Now he's exhausted & sleeping again :)   They will let him rest now.  We are going to attempt nursing him this afternoon, once we get the thumbs up.

Meanwhile, I was able to snag a computer for use in Josiah's room - SWEET!  Carl is here glad to have his company.  While Josiah sleeps, we will run and get some lunch.

I'll be back with more updates.  All my love to friends & family <3

First Morning in CICU

Josiah had a great night.  He continues to sleep.  His vitals remain good and he continues to be stable.

I stayed by Josiah's bedside last night.  I would say, "I slept here," but that would intimate the ability to sleep in an ICU room where staff is constantly monitoring a child's progress LOL.  Despite 'not ideal' sleep - I feel great today.  I am just so thankful for everything and everybody in my life.

Josiah has met several recovery milestones already.  This morning's plan: remove chest tube and breathing tube (plus a few others).  They will sedate him for the removal of tubes, then will allow him to wake up.  With any luck, he'll be able to eat this afternoon.  After breastfeeding exclusively for 3 months, it's been strange to not have that time with him.  I can't wait for those moments again :)

The care here is what I expected - phenomenal!  Josiah continues to prove his resolve.  He is here for a purpose; nothing is going to slow him down.  He is our littlest angel.  He's our little heart hero <3

I'm going to grab some breakfast.  I'll be back with more updates :)

Wednesday, January 25, 2012

Surgery was a SUCCESS

Josiah got his bath at 1:30am.  He got his last feeding from 2am-3am.  Then, he napped.  We left at 5am for the drive into Children's.  We arrived at the hospital parking garage at 6:15am and were checked in by 6:45am.  First stop, pre-op admitting.  We were escorted to the pre-op holding area.  Josiah was hungry by then.  Luckily, he recently discovered his thumb which was successful at pacifying him :)

At 7:50am, members of the team arrived.  Nurse Tom allowed us our hugs/kisses with Josiah then took him from me.  He immediately voiced a fondness for our little man.  Josiah was given an oral sedative and handled it like a trooper.  Nurse Tom wrapped Josiah in his favorite blanket, gave him his favorite stuffed animal, and CARRIED him to the O.R. (that made me smile).  Carl & I were escorted to the family waiting area.

The RN liaisons there are wonderful.  They made us comfortable, assured us that updates would be provided, and stayed in constant contact with us.  At 9am, the surgeon came in to introduce himself and explain the procedure.  The wait began.

The first call came around 10am.  Josiah had handled anesthesia well.  The incision had been made at 9:30am.  He was transferred to a heart/lung machine at 10am.  The transfer to machine went smoothly.  Josiah was stable and doing very well.  Carl & I walked around and tried to waste time.  We made our way back to the waiting room at 11am.  At 11:40, the second call came.  The repairs to the heart had been successfully completed.  He transferred smoothly off the heart/lung machine.  They were about to finish the procedure.  Josiah was stable and doing very well.  What great news!

At 12 noon, Dr. E. came in to speak with us.  The VSD was much larger than anyone predicted.  It was partially covered by a valve which is likely why it fooled us early on.  Dr. E. was able to move the valve, repair the hole, and gently slide the valve back into place.  The ASDs were numerous (about 5-6) and were all closed successfully.  They performed an echo cardiogram, which confirmed that repairs had been completed with great success.  The elevated pressure in his heart immediately registered as normal :)  Josiah is "ahead of schedule" in terms of stability and recovery - what great news this is!

He's being moved to ICU as I update this blog.  Within the hour, we will be able to see Josiah again.  We're trying to prepare for that first glimpse....pure ecstasy and, perhaps, a little heart break.  Josiah is on a breathing tube - I know that will be the hardest thing to see.  My heart is still leaping for joy that my little man has come through surgery without complication.  His heart is whole and is beating on it's own.

Josiah should be able to be removed from the breathing tube later today or tomorrow morning.  Then, he can start nursing again.  Expected stay 5-7 days.  We can't wait to bring him home.  I already miss the older boys :)

I can't thank you all enough for your kind words of support and encouragement.  We wouldn't have gotten through today without you!  It's a beautiful journey and I'm glad you're able to share it with us.

Off to ICU....I can't wait to see Josiah <3

Tuesday, January 24, 2012

The Day Before Surgery

We took Josiah for pre-op testing today.  He had an EKG and labs, which all came back normal (a big relief).  His weight had dropped from 9.3 lbs to 8.7 lbs since Friday....that was frustrating to hear.  Given that he's been on Lasix since Friday, the medical staff was not surprised by the weight loss.

We spoke with a member of the anesthesiology and surgery departments.  Releases were signed.  We were given a tour of ICU, Josiah's first stop after surgery.  We can bring a computer, as long as we don't plug it in (Wow!  I guess I'll be leaving the computer at home LOL).  We can have a drink in Josiah's room, as long as it has a cover on it.  We can eat, as long as it's in the family room.  We can have our cell phone, as long as we're in the hallway outside of the unit.  Ok, looks like this stay won't be quite as comfortable as I had hoped.  The priority is Josiah so it matters not.  Sometimes, a little extra comfort just helps.  Oh well.

We were home by 2pm, which was nice.  We all took a nap.  I checked in with my folks; the boys are doing well.  We've cleaned up the house a bit.  I'm not planning on getting a lot of sleep tonight.  It's 10:43pm now.  We still have to pack for Josiah (and us).  Josiah needs a bath.  And, finally, I need to feed him at 2am to allow him to eat before his 3am cut-off time.  We're leaving the house at 5am to assure the 7am check-in time.  Traffic can be horrible, even that early.

It's hard to imaging handing my 3 month old baby, and all the control, to a surgeon in a few hours.  It's hard knowing that they will stop his little heart from beating, in order to fix it.  It's hard knowing that he will have tubes, and breathing machines, and goodness knows what!  I just keep reminding myself that it's become a fairly common procedure, and success rates are very high (98-99%).  It's hard knowing that he will be in pain.  On the other hand, I am grateful that he is too young to know, too young to be afraid, and too young to remember.

God, please take care of my son!
Josiah, be strong my littlest angel <3

Sunday, January 22, 2012

Preparations for the week to come....

My mind has been reeling.  Constant check-lists going through my head.  Have I contacted everyone I need to?  Have I cancelled appointments that were previously scheduled?  What do I need to pack for the boys?  What do I need to pack?  What needs to get done at the house before we leave?

The phone call came Friday morning.  Pre-op Tuesday.  Open-heart surgery Wednesday.  So much to do now.  My first call was to my Mom who graciously agreed to take the older boys for most of the week.  Jesse will go to school on Monday; James will have his EI appointment.  Then, off to their grandparents house for the week.  Jesse's teacher has already been notified of his anticipated absence this week.  Playgroup has been notified of James's absence this week.  I've notified the pediatrician and EI.

It's been a fury of laundry this weekend.  I need to be sure the we all have the clothes we may need for the week.  Jesse's bag is packed.  James clothes are ready to be packed.  He's in bed, so this will wait until morning.  Blankets, best friends (ie, stuffed animals), etc will all be packed last.  I've explained to Jesse what's happening.  James just knows he's having several sleepovers at 'Mimi's' house :)

Tomorrow is a busy day.  Finish packing the older boys.  The lists keep running through my head.  Don't forget to pack this; don't forget to pack that.  Jesse has school.  James has EI.  Their favorite hairdresser is coming to our house to cut their hair.  Josiah has EI.  I'm going to try to squeeze in a trip to the dentist in the a.m.  Still, I need to find time for laundry, packing, post office, and grocery store.  Later in the day, we'll take the boys to my parents' house.

Tuesday, pre-op.  Wednesday, surgery.  I will stay with Josiah until he returns home.  Carl will make the trips back-and-forth from hospital to home.  Knowing ahead helps.  I'll have clothes, snacks, a few DVDs, and my computer with me.  I won't feel so out of touch.  I know that will be helpful.

Our new DS parent friends are great.  One has already told us she will be bringing us a care package while we are there.  Another has told us she will be checking on us.  Carl's brother is coming by to check on us.  Aunts/Uncles have offered to assist.  Friends have offered an ear and a hug, as needed.  They may sound like small things, but they are not! 

"Be faithful in small things because it is in them that your strength lies." - Mother Teresa

Everyday, I am humbled by the support we receive from others.  We couldn't ask for better friends or family.  We hope they know how much we appreciate them.

"A friend is someone who reaches out for your hand...and touches your heart." - anonymous

Friday, January 20, 2012

Synagis shot & Surgery scheduled

Yesterday, we took Josiah to the pediatrician for his first Synagis shot.  He tolerated the shot well & had no adverse affects. 

This morning, we received the anticipated call from Children's.  Josiah will undergo open heart surgery next Wednesday, Jan 25th.  Pre-op is scheduled for Tues.

Despite being anxious about the surgery, we are so pleased that the wait has lessened.  5 days....the countdown begins.

We've arranged for the boys to go to my parents house for the better part of next week.  We are so thankful to them for all of their support.  We are also thankful to the boys aunts/uncles who are always a constant support.  And, as always, we're thankful for friends who are always willing to lend a listening ear, or words of encouragement.  It truly does take a village.....

Wednesday, January 18, 2012

Sedated echo & the wait for surgery

We were up at 4:15 this morning.  I had to be sure that Josiah was able to nurse before the 5:30 cut-off time.  Mission accomplished.  My goodness was he full of smiles this a.m.  We were out the door at 6:15 with the hopes of beating the morning commuters.  Mission semi-accomplished.

We arrived at 8:30, parked, got a snack, and checked-in at 9am.  We met with the RN responsible for the sedation, the cardiologist, and a few people in between.  At 9:50, Josiah received the medication to help him sleep.  He was not a happy baby.  At 10:20, they began the echo cardiogram.  They finished at 12 noon.

When the cardiologist walked in, I had high hopes that he'd tell us there was great improvement.  Unfortunately, that was not the case.  Josiah's heart remains enlarged on the right side.  There continues to be a great deal of pressure within the right lung.  These had not been a result of the virus.  They are caused by something else.

Repairing the holes in Josiah's heart now becomes priority.  They will fix both the VSD and multiple ASD's.  Unlike the previous time frame of "within three months," it is now "within a month."  The MD said the VSD and ASD's are common (particularly in Trisomy 21), the enlarged heart and increased lung pressure are uncommon in a child this young.  This may be indicative of hypersensitive lungs.  It may be a result of the holes in Josiah's heart.  If that's the case, surgery would demonstrate improvement.  If not, the search for answers start again.

In the meanwhile, we try not to get too far ahead of ourselves.  We wait for surgery to call with an appointment for pre-op and surgery itself.  We plan from there.  Carl & I will take turns staying with Josiah in the hospital, at least for the first few days.  Josiah will initially be on a ventilator and breastfeeding will be impossible.  So, I will pump & wait until he can feed again.  Thereafter, I'll stay with him to nurse him as he is able.  He'll likely be in the hospital for 4-7 days, but it could be longer.  We pray for fast, easy recovery.

At 12:30pm, we took Josiah down for his chest x-ray....just more data for the MD's to consider.

We were pulling out of the parking spot at 1:30pm for the one hour ride home. 

The pediatrician's office called while we were driving home.  Josiah's Synagis arrived today.  We'll bring him to the pedi tomorrow for his first shot, but not before bringing he & James to playgroup - a bright spot in the week :)

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming...Wow! What a ride!" Melvin Trotter 1924-2006.

Friday, January 13, 2012

Cardiology update, Open-heart surgery, and Synagis shots

Josiah's cardiologist called this a.m.  He's reviewed, and re-reviewed, the results from last weeks echo cardiogram.  He's consulted with his Senior staff members, and they have reached a consensus.

Josiah has multiple ASD's.  Due to the enlargement on the right side of his heart, it is believed that there is more blood flowing between chambers than originally thought.  Unfortunately, this can lead to pulmonary hypertension.  For a person without Trisomy 21 (Down Syndrome) the damage could take a decade or more.  For someone with DS, the damage can occur within one year.  Josiah is three months old now.  They want to prevent his lungs from becoming damaged.  As our pediatrician told us, pulmonary hypertension is often irreversible.  Therefore, they have made the smartest decision to protect our little one.

Josiah will have open-heart surgery.

Next week, we will be bringing Josiah to Children's for a sedated echo cardiogram.  He will also have an xray of his chest done (perhaps this is to confirm the earlier suspicion of RSV, perhaps it's just to gain an image of his lungs).

The cardiologist put in a surgical request today.  We have been told that we will be hearing from the surgical clinic within 7-10 days.  Surgery will likely occur in 4-8 weeks.

Had that original VSD not been found, we would probably be more flooded with emotion now.  Mind you, we didn't know about the ASD's.  We had prepared, early on, that Josiah would need surgery within the first 6 months of life.  Believing the VSD had closed was a huge relief, but did not erase that initial preparation for what was to come.  I'm glad about that. 

You never want to be told that your baby needs open-heart surgery but the statistics are comforting.  This is considered an 'easy' operation with a high success and rapid recovery rate.  Josiah will likely be home within a few days of having surgery. 

I cannot speak highly enough about the support system we have, and have built.  Our pediatricians office called today stating they will putting in a request for Josiah to receive the Synagis shots for RSV.  We didn't have to ask....they simply took it upon themselves to initiate.  The following is information I copied from the website about Synagis.

Although the flu and flu shots get most of the attention in the fall and winter, parents of high risk children shouldn't forget to consider Synagis shots to prevent RSV infections through the winter RSV season.

While RSV, or the respiratory syncytial virus, may just cause a cold in older children, it can cause a serious and life threatening infection in younger high risk children. These children, including premature babies, can develop bronchiolitis, which is associated with inflammation in the lungs, wheezing and difficulty breathing. RSV can also cause croup, ear infections, and pneumonia.
Children who are considered high risk for RSV infections and who should get monthly Synagis shots during RSV season, which typically lasts from November through April, include:
1) Infants and children under age 2 years who have required treatment for chronic lung disease, such as oxygen, bronchodilators, diuretics, or steroids, within 6 months of the start of RSV season.
2) Infants born at or before 28 weeks gestation and who are less than 12 months old at the start of RSV season, which means that these preemies will need Synagis for at least one RSV season.
3) Infants born at 29 to before 32 weeks, 0 days gestation and who are less than 6 months old at the start of RSV season.
4) Infants born at 32 weeks, 0 day to 35 weeks gestation and who are less than 3 months old at the start of RSV season or who are born during RSV season and who have at least one of the following risk factors:
  • child care attendance (daycare)
  • has a siblings less than five years old
5) Certain children who are younger than 2 years with congenital heart disease, including congestive heart failure, pulmonary hypertension, and cyanotic heart disease.

6) Certain infants born before 35 weeks with congenital abnormalities of the airway or neuromuscular disease.

Where to Get Synagis

Because Synagis is so expensive, it is unlikely that you will be able to get your child's Synagis shots from your pediatrician. Instead, your pediatrician will probably refer you to a 'Synagis clinic' or a home health agency for the Synagis shots.

The NICU might also set up your child's Synagis shots before you leave the nursery if your child was born prematurely.
Keep in mind that it can take some time to get the Synagis shots approved by your insurance company, so start early if your child is in a high risk group and needs Synagis this RSV season.

What You Need To Know

  • Once you start Synagis during an RSV season, you typically complete the season, even if your child outgrows his risk factor. For example, if your 31 week preemie started his Synagis shots when he was 5 months old in November, you wouldn't stop them in December just because he was now 6 months old. If your child's risk factor was attending daycare and your child is now staying home, you might talk to your pediatrician about whether or not you needed to continue your infant's Synagis shots though.
  • During a typical RSV season, kids get their last RSV shot in March, which provides protection into April. The timing of the last shot may vary though, depending on whether or not experts are still seeing a lot of children with RSV into early or late April.
  • Some experts consider multiple births, crowded living conditions, family history of asthma, and low birth weight, to be additional risk factors to use when considering which 32 to 35 week preemies should get Synagis.
We have been told that Josiah qualifies for these shots.  The request for approval (with the insurance company) was submitted today by the pediatrician's office.  We have been assured that he will be approved.  At a cost of $900.00 per shot (which supposedly increase in cost, with each dose), we are thankful for this great team of professionals working with us and advocating for our son.

I read two quotes today (on a social media networking site).  It's funny how sometimes things seem like they were intended for you to see, at just the right time :)
  • "When life puts you in tough situations, Don't say, "Why me?"  Just say, "Try me!"

  • "Don't believe in miracles - depend on them" ~ Laurence J. Peter

Monday, January 9, 2012

Pedi follow-up

We took Josiah to the pediatrician today.

The pedi had already read the report from last Friday.  We discussed the results (VSD, ASD, and enlarged heart) and upcoming appointment at the Children's Hospital. 

Josiah is doing so much better since Friday.  His color is good.  He's alert and full of smiles.  His respiration's are good, heart rate is good, and oxygenation level good (97).  These are all good signs.

The pedi was concerned that for three weeks, Josiah had no weight gain.  So, for fun, he tossed Josiah on the scale.  The little man has gained 4 oz since Friday....another good sign.

No follow-ups with the pedi are needed, unless we have concerns.

Upcoming appt at Children's will give us more info.

EI PT returns this week to work with Josiah. 

I'm so glad my beautiful boy is feeling better.

This is an amazing adventure :)

Sunday, January 8, 2012

Cardiology with unexpected results

Yesterday, I brought Josiah to the cardiologist for a routine evaluation. 

At 12 wks gestation, we learned that Josiah had a hole in his heart (ventricular septal defect (VSD)).  At wk 18 gestation, we were told that the hole had closed on it's own.  Just to be sure, we made an appt at an Advanced Fetal Care Center.  There, they performed another ultrasound and confirmed that no holes were present.  We were thrilled.

At birth, a heart murmur was detected but was gone the next day. 

Approximately 3 wks ago, the pediatrician detected the heart murmur again.  He referred us to the cardiology clinic affiliated with the Children's Hospital.  Given the previous ultrasounds and EKG's (which all looked good), we were not concerned.

As a side note, Josiah developed a respiratory infection about 10 days ago.  He was subsequently admitted to the Children's Hospital for one night.  There is an assumption of RSV, though he was never formally tested.

Yesterday, I took Josiah to his scheduled appointment with the cardiologist.  The MD noted the rapid breathing and chest congestion, not surprising given the respiratory infection.  They performed an echo cardiogram.  The MD read the results, came in, asked me a few questions.......then the three pieces of news.

1. The original hole (VSD) in Josiah's heart never fully closed.  They are able to see how large it was, the portion that his own tissue covered, and the hole that still remains.  I am told this is mild-moderate in size.

2.  Josiah also has an atrial septal defect (ASD).  I am told this is mild-moderate in size.

3.  Most concerning, the right side of Josiah's heart is quite enlarged.  The right side of the heart is the side responsible for pumping air to the lungs.  It is hoped that his heart has been working harder due to the respiratory infection.  If that proves true, the heart should decrease in size once the infection clears up.

The positives: Josiah has not fever, is eating well, sleeping well, and not sweating during feeds.  His oxygenation level is good (avg 97/98) and blood pressure is good.

Teary-eyed, I went to the pediatrician immediately afterwards.  Josiah was given a nebulizer treatment in the office, which seemed to improve his airflow.  We were given a nebulizer to bring home.  We will use this three times per day for the next ten days.

We have a follow up early next week with the pediatrician.

We have a follow up appointment scheduled at the Children's Hospital in two weeks.  They will perform another echo cardiogram and compare the two.  We are keeping our fingers crossed that a marked improvement will be evident.

“Fear can keep us up all night long, but faith makes one fine pillow.” - author unknown

Wednesday, January 4, 2012

Looking back at 2011

2011 was a year of great change, enormous obstacles, tragedy, and laughter.

In February, we discovered I was pregnant.  During the next few months, we learned that we were carrying a baby boy and that he would have Down Syndrome.  We learned of a hole in the baby's heart that would later heal on its own.  In October, we gave birth to Josiah.  We quickly became involved with several Down Syndrome Societies, Early Intervention, the Down Syndrome Clinic at our local Children's Hospital, and a new group of friends.

Carl, after having had a horrific history of back pain and ulcers, had his first cortisone shot in February.  His back pain kept him from participating in most activities for the better part of the year.  In Sept, we learned that the cortisone shot had begun a chain reactivated an ulcer that had been surgically repaired years ago.  The result.....he almost died, had emergency surgery, spent 3 weeks in the hospital, and returned just in time to witness the birth of Josiah.

Our son Jesse turned four.  He started preschool in February, enjoyed summer activities with family, and returned to preschool in Sept.

Our son James turned two.  He enjoyed summer activities with family, and began potty-training.

Both older boys said good-bye to an uncle and embraced a baby brother.

In Sept, my brother Scott died unexpectedly of a drug overdose.  He was 50 yrs old.  My brother Jeff and I both spoke at his funeral and we adjusted to not having an older brother any longer.  We watched our parents bury their oldest child.  We celebrated the good memories and mourned what could have been.  We celebrated our first Thanksgiving and Christmas without Scott.

Some would say, it's been a bad year for our family.  I don't see it that way.

*     We were given the gift of Josiah and we couldn't be prouder to be his chosen parents.

*     We've watched our older boys grow, learn, blossom, and embrace life.  We couldn't be any prouder of them.

*     Our family continuously demonstrates their undying love and support.  We are extremely lucky.  I thank God, everyday, for blessing us with our family.

*     Carl was given a new lease on life.  He was blessed with doctors that intervened, at just the right time.  He was returned to us.  For that, we are so blessed.

*     My brother Scott finally found his way Home.  His torment ended.  He found peace.

*     We have 3 beautiful boys who remind us, everyday, that life is a journey that must be embraced with love and adoration.

The focus can never be on the 'bad' moments but rather the knowledge gained from enduring them with grace, dignity, and an open heart.

Happy New Year!