Home Sweet Home!

841 S. Poplar has never felt/looked better than it did last night when Chris and I brought William home for the first time EVER!!  Such a celebration at 6 weeks of age...getting your first breath of fresh air, riding in a car (not an ambulance), and being carried in the front door.

First time outdoors!!

LOVE!!!

All 3 of my babies together in our house!!!

Carson's first time holding Will by himself.  He was fascinated by Will's hands.  They just held each other's hand for 3 minutes.  PRECIOUS!!

Our homecoming is such a bittersweet moment.  We know that we are only home for a short while.  William is scheduled to have a cardiac catheterization on July 5th.  His respiratory symptoms in the past week have continued to be problematic.  He is simply breathing too fast!  He is not working extremely hard for each breath but taking too many shallow breaths.  This is very similar to how he was breathing before his TAPVR repair.  His echocardiogram last week was concerning with a pressure of 6 in his left atrium.  The echo was repeated this week.....not reassuring at all.  His pressures have nearly doubled in 1 week.  The left atrium is reading out at 11.  And, the area of surgical repair is too narrow.  The narrowing is causing the increase in pressure.  The cardiologist and the cardiac surgeon do not understand how or why this has happened.  So, the cath will be done to determine what the next course of action is for William's heart.  If there are areas that can be ballooned during the cath, then this will be done.  But, the entire team is doubtful that the narrowing at his surgery site can be ballooned.  The cardiac surgeon wants the pictures before another open heart surgery.....likely the end result for William, a second open heart surgery!


Please continue to pray for William and the medical team managing his care.  As the mom administering his meds and managing his feeds from home, I need prayers as well.  I am a trained professional who does these tasks day in and day out, but not on my own baby.  Tonight, I had to place his NG after he pulled it out.  4 attempts later--it is in place and working like a charm.  AND TAPED DOWN A LITTLE BETTER!  Watching your 6lb. baby cough and scream as you put a tube down their throat is awful...and seeing your hubby hold him steady..awful!!  6 medications throughout the day at multiple times through his NG--a process in itself.  And, then let's add his double skimmed breastmilk to the mix.  Yes, you read that right, double skimmed breastmilk.  He had an intolerance to the Enfaport formula that he needed for his chylothorax from surgery and can't have fats in his diet for 2 weeks.  So, we are having to skim all milk for fat for 48 hours and then add another fortifier to get him calories.  Poor kiddo is being tube fed 22 hours a day...he can't take food orally because he is breathing too fast.  It is like a science experiment in my fridge.  And, once again, William broke the mold--he is only the 2nd baby that CMH has used double skimmed milk as a feed.

Papa Miller and Grandma Joyce savoring the moment!!

Being home is exhausting!!!

AND, HEART SURGERY...."THAT WAS EASY"

This is the only time he has not had one tube on his face...the moment didn't last long, but we snapped a shot in the meantime!!

Ups and Downs

Roller Coaster Ride...

The Friday before Will's surgery the cardiologist told us that his accessory vein was like a roller coaster from his lungs to his liver....well, they stopped the flow of that roller coaster with surgery, but the ride continues.

William was able to be extubated and free of the ET tube on Monday and has done so well weaning off his oxygen.  We are on room air and without any additional oxygen.  But, his respiratory rate and effort are not quite where the docs (and his parents) want them.  He is simply breathing too fast.  And, his lungs are a little too hazy on x-ray.  So, they added another diuretic today.  It seems like every time his electrolytes get back to normal, they have to change his meds to pull more fluid off his lungs. 

Right before the oxygen was removed!!

Big boy bed!  See his red hair!!  Only tube is his NG!!

The echocardiogram that was completed last week was not the most reassuring to the cardiologist.  It seems that his pressure in the left atrium (where the pulmonary veins were connected to the heart) are too high.  Ideally, the pressure would be 0 to 3 (max) and Will's were 6.  Discussion was made about when to repeat the test--early this coming week, and what would need to be done for repair if the pressures are still too high.  And, sadly, the answer may be another open heart surgery if they continue to be too great.  Please pray that they will improve and that his breathing will get better.  I am not sure that his mommy and daddy can handle more!!  And, we know William is strong, but how strong can one be at 5 weeks old?  Strong enough to endure another open heart surgery???  We pray that it does not come to this.

To top all of this stress off, the poor baby has chylous fluid in his chest.  This means that his lymph system was injured during surgery...kind of expected given such a small guy with limited chest cavity to perform the surgery.  But, this means that his lymph system cannot move the fats throughout his body like it normally would.  So, when he gets fatty foods in his stomach the fat then goes into his chest cavity and chest tubes.  Therefore his diet had to be changed...no more of mommy's milk.  He has to be on a no fat diet for 2-3 weeks.  Infaport formula and William are not in agreement.  He has thrown up after almost all feeds including his NG feeding tube on one occasion.  I know all too well that throwing a feeding tube up is the WORST experience.  And, I watched my baby do it!  Awful.  But, now we are trying something new to help him....double skimmed breast milk.  Hopefully, skimming the fat off the milk will help his GI system without harming the chylous.  Poor baby can't catch a break!

First outfit in almost 2 weeks---clean until the formula and Will did not mix. We are now wearing hospital gowns or blankets....too much throwing up for cute clothes!!

1 month......

1 month ago....yesterday.

We began a new adventure in the Crazy Life of the Cunninghams.  William was born.  And, with his birth, we became a family of FIVE.  But, in the past month, we have not lived as a family of five.  It has been chaotic to say the least.  Chris and I have tried hard to juggle parenting of three kids who all have different needs right now.  And, at times, it seems like we are sinking rather than staying afloat.  But, we can mark one month DONE.  Now, we are moving on up in this world. 

This pic definitely represents my 3 kiddos--Kenzie, the mother hen, Carson, the class clown, and William, the Prince being doted on by his brother and sister!!

Mackenzie is a quiet, people pleaser.  She is also our sensitive child who wants to make people (especially her parents) happy.  She may have sass but all in all is an emotional girl.  Throughout the past few weeks, we have seen her grow as a big sister.  She has taken the role of Carson's protector ever so serious.  They cannot be too far apart....except when she got a girls' weekend at Briley's house.  We have also seen her struggle with worry and frustration.  Breaks mommy's heart to see her keep things bottled up or act out her frustrations with a nasty attitude.  But, I know that she is doing the best she can handling all of the changes we have experienced as a family.  And, soon my little girl will get to be a little girl again.

In the last month, I swear she has grown 2 inches.

First time seeing her baby brother after his surgery--1 week after last seeing him.  Love all over the place as I sure you can tell!!

Carson is the class clown of our family.  Just thinking of his ornery behavior makes most people smile.  In the last month, this goofiness seems to be thriving.  But, it makes for a TOTAL lack of focus.  If you can make someone giggle, why do you need to pay attention to anything else????  He has grown up in a month's time....he no longer sits back and does what his sister tells him to do.  A struggle begins with each demand he chooses to ignore.  We know he is hearing them all but listening not so much.  Despite the ornery behavior, his hugs remain.  Definitely our LOVER--never a time when you can't get a hug and a kiss from this boy. 

Can't you all see the mischevious little mind working---"where can I pour this water?"

William is the big man on campus today.  Prince William is ET tube free and off the ventilator.  We have been patiently waiting for him to let us and the medical team at CMH know that he was ready to wean off the vent.  And, today was the day!!  He was a pro on CPAP and then even better on just a wimpy little 1L of oxygen!!!  He also got rid of his CVP, Arterial line, 2 IVs, Neers sensor, and moved to a step down room in the PICU.  A graduation of sorts--a good sign when they move you down the hall away from the main nurse's station.  He was so happy and alert all day.  To the point that we were telling him it was night night time.  Can't wait to hold him some more tomorrow....only got a few minutes of loving time.  His chest is still so sore with movements--as it should be!  So, we tried to minimalize activity today.  And, daddy will get his cuddles in tomorrow, too.

Resting comfortably this morning with his ET tube in place.

Wide awake and ET tube free.....doesn't he look smaller without all the extra wires and garb??  Back to being my tiny baby who can be swaddled!!!

Pics!!!

Just thought I would post some pictures of recent days!!!

Snoozing on the night before surgery---couldn't bring myself to wake him up to snuggle!!  So cozy!!

Carson playing at the Ronald McDonald Summer Fun Party!!

Chris and Mackenzie playing with bubbles at the party..."Daddy, you are making all of the other kids so happy by playing with us."  Kids can definitely melt your heart.

A hard moment for the mommy and daddy....breaking it to Kenz that William was having surgery the next morning.  She cried and loved on her brother.  What love!!

Sitting in the rocking chair gets a little old at times!!

This picture reminds me just how small and fragile my baby boy is....he looks so tiny next to his daddy.

Taking it all in....life is good with a binky in your mouth!!

My eyes really are getting better every day!!!

Cherish the Moments....

Word of the Day.......Cherish!

Today was the BIGGEST Day of our lives....William had his open heart surgery.  We have been waiting for this day since finding out about his defect, yet it was the toughest moment when they wheeled him down the hall to surgery.  We hope no other parents will have to experience something such as this, but we know others do everyday.  And, we have a strong faith in God that has helped us through this tough time.  We just hope to spread His love to others--if we can glorify God during our toughest days, then others will see the Light.

Right before surgery....Bright Eyes this morning made Mommy and Daddy so happy!

Will made it through surgery.  His TAPVR repair was successful.  The next 3 days are critical for him.  He is such a fighter that we know all will be well!!  But, seeing your baby in the warmer with 11 IV meds infusing, on a ventilator, blood transfusing, chest drains in place was almost TOO much for me to handle.  I am a stoic person who doesn't frighten easily, and I almost went weak in the knees.  Seeing a critically ill patient is one thing but seeing your critical post surgical baby is a completely different thing.  I am ever so glad that Chris and I were able to snuggle him for almost 2 hours this morning.  Those were the most precious moments of William's life thus far!!  I cannot describe how important is was for us.  And, I am CHERISHING the memories....in order to get me through the next 3 days.

Snuggling in Mommy's arms this morning....snoozing away without a care in the world.

Snuggling in Daddy's arms....life was grand for Daddy and William at 6:00 this morning.

Today, we received an anonymous letter from a lady while waiting in the PICU waiting room.  The letter was handwritten.  It simply stated that times are tough and that people are always praying, even those you don't know.  And that the author was praying for our child and that they hoped we found peace in knowing that God will lay His Hands on our child and help to heal his illness.  Brought tears to our eyes to know that someone cared enough to write me a letter even though they did not know us or William.  Yet, they took the time to note our pain.  And, it included an amazing gift, a $100 bill.  We were completely shocked by this family's genorosity and excited to pay it forward to another family in the near future.  After crying about the goodness of people, I wrote a thank you letter to this family.  I then had the opportunity to thank the woman in person....what a story they have.  A sick 12 year old daughter in the hospital, 6 hours away from home, other child at home, and they still chose to glorify God and Pay it Forward to us!  Amazing people surround us all the time....CHERISH OTHERS GIFTS EVERYDAY!!