Thriving!

Emily's babies are his "friends"

just another moment, between brother and sister :)

Weighing in at 12lbs now, Josiah is really beginning to thrive.  Yesterday he finished two, 4 ounce bottles.  I feel so proud when I see those tiny jaw muscles really doing to work to drink a bottle.  That is something we have missed for months.  It's like it just "clicked" and he remembered what to do again!  His surgeon suggested that instead of venting him after each feeding, to allow the air to escape, just continue attempting to burp him.  Typically, it takes 2 weeks after surgery for the swelling to decrease and the patient to regain the ability to burp.  Strong man is still having a tough time with this.  We will continue to work with him in hopes that he will improve.  The only concern is that, if he is not burping than perhaps the wrap is too tight. Dr. Lanning (the surgeon) said he made Josiah's a bit tighter than usual because he had so many life threatening events and was so severe in his reflux.  He said, even so, it should not be so tight that he cannot burp when needed.

The site where the g-tube is, had to be cauterized Tuesday.  Josiah was less than enthused during that process.  They had to basically burn the wound, with silver nitrate.  He was in a lot of pain, as you can imagine, it is an excruciating process.  He had granulation tissue, which basically is his stomach tissue protruding out around the opening of the wound.  It's just one of those things that accompanies a "g-tube life".  We were told to expect it, and how to approach it.

Josiah is such a happy little boy these days.  I am seeing that the surgery has made such a difference for him.  His home care nurse approved us giving him more time on his belly.  He rolled over!!  Of course this was such a proud moment for mommy =)

Strong Man enters his 6th month!

Today, Josiah has spent 5 whole interesting months in this world!  There have been so many ups and downs and at times, as the mother, I have felt there were more downs than ups.  Then he smiles, and each smile erases 100 negative memories.  When I look back to the NICU days it seems like eternity ago that I first saw that sweet face.  We have overcome so many obstacles, and we have kept the faith throughout them all.  People question me all the time, "how do you do it?  I could never be that strong."  My only answer has to be GOD!  He knew the plans He had for Josiah and my family and I am certain that He has equipped me with this strength.  As a mother, you don't have a choice as to your strength, when your child is suffering. You buck up and you smile, you press forward and you hold his hand, you take each moment for what it is and you remain positive.  If we would have known of these upcoming struggles when we were trying to conceive, I am not positive we would have pressed forward with conception.  Perhaps, this is why we are not meant to know our future.  Now that he is here, everything makes sense.  So much is clearer and we appreciate so much more!

Back in October, Josiah was without oxygen for approximately 3-4 minutes.  The fear of brain damage has been deep within our thoughts.  Recently I have noticed that Strong Man himself is hitting those milestones and exceeding the expectancy on some of them!  Who would have thought that reaching for a toy and pulling it to ones mouth would bring tears to a spectators eyes?  Each small act of growth that Josiah does is another brick lifted off this weighted mother.  He is progressing well and growing at a wonderful weight, with all considered.  Now weighing in at 11lbs 13oz I feel like I'm handling a giant.  Quite the difference from the 4lbs I once rocked in a NICU chair, 5 long months ago.

His eating is still not up to par, he is taking about 2-3 ounces by mouth every 5 hours. (the rest goes in his tube)  We have tried 4 different bottles and we have finally found one that works best!  I can't believe the money we have spent in bottles LOL  The NUK bottle seems to be the magic one.  We will keep working with him and helping him along.

Josiah will be discharged of his home oxygen now, it is not necessary and little by little the equipment will dwindle down.  Its always a bittersweet feeling to get rid of these medical pieces.  Part of me rests easy in the comfort of having it bedside, but I am glad that he has proved himself of not needing it.  I have to let go of these things and just continue to pray and know that no matter how much I love my son,  God loves him more.  From the mouth of his big sister "Jesus got the whole world in hims hands, he got the little bitty babies in hims hands he got Josiah in hims hands"

Rejuvenated!

All stretched out and peacefully asleep

These past few days have been like a breath of fresh air.  Thursday we received a stack of gift cards from family and friends.  Not having to worry about cooking for the family each night is such a weight lifted.  Friday a dear sweet friend of mine came over and prepared us a roast in the crock-pot while our girls played and we had coffee and "mommy time" it was fabulous!! 

Saturday was Chris' birthday and aside from the obvious reason for a night out, we also just needed a date!  We have been through so much as a young couple.  Our foundation of marriage is such a strong one because of our Lord Jesus Christ and the amount of work we put into it daily!  It takes constant work and love but most importantly, respect.  We have not had time for each other in the past months, so we decided we needed this night alone.  I called upon Josiah's nurse.  She has cared for him in the hospital and also works for the home health company.  Building a great relationship with her and her mother (also a R.N.) I knew if I could trust anyone with our children, it would be one of them!  I am so thankful that God put the two of them in our path during this season.  They have touched our lives.  So mommy and daddy were able to get out for a couple hours and enjoy a stress free dinner.  Knowing Josiah was with the only other person that knew more about his medical needs than I, it enabled us to relax and enjoy each other.

Today we were finally able to get to church.  I was definitely feeling the need for my spiritual tank to be replenished!  It was so wonderful seeing our friends and hearing the Word.  Emily has really been missing her Sunday School classmates too.  Looking forward to tomorrow, a cleaning service is coming to tidy up our lovely abode, free of charge!  A person who wishes to remain anonymous, has hired out her cleaning lady to come take care of things here.  When I got this informative phone call I honestly felt like I had won the lottery.  I do not know the individual who felt led to do this but they must know how obsessive I am over a clean house.  I am so grateful to them and I hope they know that.

I am truly amazed, touched, inspired, and appreciative of all the acts of kindness.  Rather from the closest family member or from someone I do not even know! We have had such an abundance of sweet cards, gifts, meals, gift cards, prayers...and LOVE!  I have enjoyed hearing that 'we' have been an inspiration to someone else!  I often think, "I am just some small shy person in this world, how will I ever be an inspiration?"  Now I see that, yes I am a small person but my God is SO BIG, so strong and so mighty there's nothing my God cannot do! :-)  Emily helps me remember that, often.

As far as Josiah's journey, he is really taking a turn for the best.  Although he is still not wanting to bottle feed, he is tolerating the feeds going straight through the tube.  I will not push the little guy, he has always been the one to call the shots.  From a tough pregnancy and long labor; to not breathing or eating on his own, Strong Man does things at his pace and no one can force him to do what he is not ready to do.

Until next time, continue to pray and know that we are beyond gracious and accepting of the love we have received. Thank you, to each of you.

We are blessed, in our trials

After spending the day at the Children's Hospital, I left feeling inspired and grateful.  The many children there who are facing lifelong battles with their special medical needs, makes me realize that our struggle is minute in comparison to these other sweet little children.  It was a jolt of encouragement and empathy for the mothers who stood so strong in the storm.

They removed the sutures and we received 3 more boxes of supplies.  We have to run his feeds a different way now, and with these new supplies.  I feel so overwhelmed at times, becoming educated on all things involving my children.  I get nervous with each new task and I doubt my abilities.  In the end I am in complete understanding and can do it without even thinking.  But I am anxious with the first few attempts of any new home medical equipment.

Such an exciting milestone for us, he does not have to be "vented" the entire time!  Remember, "venting" is when the large syringe hangs above him; connected to the tube going into his g-tube/button and releasing any air.  Now, he attempts to take a bottle, if he finishes all 4 ounces then we wait about 10 minutes for quick digestion.  Then we hook the tube into the button to allow any air to escape.  This is how we burp our baby!  Make sense yet?  He will burp on his own in the future but usually 2 weeks after surgery, once everything has healed and the swelling has gone down. 

If he does not finish his bottle, or for night feeds (I don't wake him to eat but he has to have the calories) We put the formula into a bag with tubing and the tubing runs it through a food pump and the tube deposits the formula into the syringe, which then carries it to the stomach.  With that process we leave the tube attached on the syringe to allow for air to pass through.
We have to do wound care on his incisions and where the Mic-Key button is.

This is the g-tube/Mic-Key button capped off. 

 

 

 As of right now his eating is so "hit or miss".  Sometimes when I offer it to him you can tell he wants it, even though he hasn't quite learned how to do it.  He is averaging about 2oz of each 4oz feeding.  Sometimes he takes more sometimes he takes less.  It takes him a while and he has forgotten how to seal his mouth around the bottle.  It's most pitiful when he gets frustrated and we can see why.  He is happiest not eating, but that's not an option! :-)

 11lbs 7oz now and 24" long he will be 5 months in 6 days!











Strong Man is doing well and is definitely on the right path to recovery.  His home care nurse will still be coming everyday or every other day.  He will go to the Childrens Hospital once a week for now.  If he does not start learning how to suck on the bottle we will have to go more often.  I can see the improvement though.

AS FOR EMILY, we had an appointment yesterday with her ENT Dr. It was a follow up from having her adenoids out Jan 21, 2010.  He said that she is going to need her tonsils out.  We were told last year when they took out her adenoids that her tonsils very enlarged.  Weighing only 20lbs and 18 months old he was apprehensive to remove them because the side effects are more severe, the smaller the child is.  He said now they are almost touching and are obstrcuting her airway, causing all her sleep issues! She is on a round of antibiotics and in 10 days I have to call back to schedule her surgery.  Miss Emi is now 27lbs

I guess God knows I can handle all of this or he wouldn't have filled up my plate!  Our "break" is coming and I can't wait to sing of his praises!!!

Home Sweet Home

He is a happy boy!  Look at this face, tube free!!  Such a precious little miracle our baby boy is :)

Getting home at 4pm yesterday, these past 24 hours have been a whirlwind!  I would have loved to update all of our followers and prayer warriors sooner, however there has been a lot needing my attention.  Josiah has been in a lot of pain today and Emily just got back home this morning.  She was needing some "mommy time", or perhaps mommy was needing some "Emily time".  There has not been much I can do for Strong Man when he starts to scream.  It's so tough when you can't fix your babies and I have never prayed out as hard in my life, as this week has brought me to my knees!  Spent much of the morning on the phone with doctors and medical supply companies.  We have scheduled 5 appointments this week.  We spend more time in and out of medical offices than medical professionals! LOL I have 11 doctors in my phone, pitiful! ha!

He will start at the Children's Hospital in Richmond, Wednesday.  While there, they will construct a plan for his eating aversions.  This will all be outpatient, as we work with doctors and therapist to become educated on the best path to recovery.  His past few feeds have been offered by mouth,  what he doesn't finish goes through his tube.  About half of what he should be eating he won't take orally.  As of now, his tube has to be "vented" which means it has to hang above him with an open syringe on the end, this allows the air to escape from his stomach while he heals.

He is finally allowed to lay on his back, flat!  Such a milestone.  This is the set up.

He is healing well and will have the sutures removed Wednesday.  His incisions looks great and everything is free of infection.

The redness is just irritation from the material the sutures are made from.  I have asked multiple times to ensure it is not infection.

We still have quite the journey ahead of us,  but just look at where we have come from!!  No one suffers in vein :)



*******CONTINUE WITH DISCRETION, PICTURES ARE FROM INSIDE JOSIAHS BODY DURING THE PROCEDURE *******

















This is hard to explain, the 1st picture shows the heital hernia and those that follow are from the Nissen.  You can see where the stomach was wrapped around and sewn.  The black thread is the sutures.

Power of Prayer

 I never acknowledged the mass amount of caring souls I had in my life until I knew of all the prayers being sent up.  How quickly people passed the information around and the requests for prayers from their friends and family.  We have had so many kind words sent to us from people we have never met or spoken to.  So many people praying for our struggles and our Strong Man during this time.  I hope everyone will rejoice with us as well, we have so much to be thankful for.

Josiah's first attempt at the bottle was less than encouraging, the 2nd try as well.  He finished the 3rd one, all 30ml.  He was offered the 4th one at 9pm and he was chugging like a champ!  We are giving it to him every 3 hours and will gradually increase the volume until he is at the correct rate for his size.  He is keeping it down, although he is continuing to reflux it is very minor.  He will have the G-tube and will get some feeds through that for a while.  We still cannot quite hold him, The tube has to be vented for 1 week post op.  That means he has the tube with a large syringe suspended above him, allowing gravity to take its course.  Keeping air out of his tummy, allowing him to heal and not worry about burping during that critical healing process.

He has been a bit more like himself today, smiling and laughing.  We have been moved out of the PICU and now on the peds floor.  We are in a semi-private room which makes me semi-uncomfortable.  I was stressing very badly about it, on the verge of an anxiety attack.  Worried about infection, and the other patient and their support team.  At Chippenham, all rooms are private.  We have never had to have the kids in a semi-private room.  Well, God knows what he is doing.  The person who was put into the room with us, also came from the PICU.  We shared a conjoining restroom.  Her son had brain surgery and is doing AWESOME!  Laughing and throwing a ball, like nothing ever happened.  These children are so resilient and God is so remarkable!! The bathroom is on her side of the room, but the TV is on ours LOL fair trade :)  The little boy is quiet and the parents are very considerate, we are blessed...yet again!!

He will eat again in an hour, at 12am.  2oz is what he will be offered.  He has had a very fussy day, still extremely gassy from all the bagging Friday morning and the surgery as well.  His vitals have been wonderful, aside from a low grade temperature that was resolved with Tylenol.  No morphine at all today!  He should come off IV fluids tomorrow.  If all goes well we will be back at home as a family of 4 in no time!  Emily will be going to church tomorrow morning to see all her friends, she has missed them!


Colossians 3:17

Breathing on his own!!

 Josiah spent the day being weened off the forced oxygen as well as the morphine.  As the day progressed, he continued to improve and by 8:45pm Strong Man was breathing without medical intervention. 

TOP number in GREEN: Heart Rate 

MIDDLE number in BLUE: Oxygen Saturation %

  BOTTOM number in WHITE: Respiratory rate   

BOTTOM LEFT CORNER in PURPLE:  Blood Pressure

With his stats in a normal range, we are so encouraged with this recovery.  An hour later, we were able to offer a 15ml bottle of pedialyte.  With his nurse standing by, this excited mother and father started trying to feed him.  It was an unsuccessful process, as he was not fascinated or intrigued. Flat out just not interested, he would not attempt it.  He has the G-Tube and will be getting pedialyte through the tube, through the night.  They will begin at 5ml and see how his stomach tolerates that, then four hours later he will move up to 10ml and up by 5ml each time.  He will meet with a dietitian tomorrow and considering all goes well throughout the night, he will be on formula tomorrow.  Needing to start with something light and clear, they begin with the pedialyte and work their way up to the typical 24 calorie formula.  It is 12:10am (Saturday 1/8) and she just started the first 5ml in his g-tube.  Only time will tell and Josiah is the boss, he will express his needs to us and what he can and cannot handle.  Tomorrow we will attempt to entice him with a bottle of formula and see if he is more accepting to that.

Only getting 30-40 minutes of sleep last night, I am hopeful I will rest easier tonight knowing my baby boy is breathing better and out of pain's way!  Please continue to pray for us, and I will continue to update nightly.  Tonight and tomorrow will expose a lot and my prayers are that the surgery did the trick.

Know to expect, the unexpected....

The day started out as planned, only to end in heartache.  Arriving at MCV at 10am, we were asked to have a seat in the waiting area.  This is where we remained with some of our close family and friends.  We were taken back to the pre-op room, met with doctor's, surgeons, attendees and nursing staff.

(happy boy prior to surgery)
The surgery was pushed back about 3 1/2 agonizing hours which would bring flares of impatience upon any soul.  After the hours of waiting and the days of preparedness it all comes down to one final moment, handing you sweet child over to a stranger. One whom aspires to calm many worries; but even in her strongest efforts, fails.  Headed back to the waiting room, I wipe away one quick tear.  We grab the supportive family members who were able to be there and down to the cafeteria we head, pager in hand.  They give you a pager upon arrival so that you may walk the premises of the hospital and remain in contact with the latest on your family member.  45 minutes later they paged us to inform us; anesthesia is successful, IV is in place and the operation has begun.  We passed time while in the waiting area and the paged again just to update that things were progressing well.  The final call came through at 6:30pm, he was waking up and did well.

I then learned that once inside of him, a hiatal hernia was exposed to the eye of the dr.  He first completed the operation to repair the hernia, then did the intended surgery on his sphincter, and put in the Gastric Tube.

This picture shows the G-Tube, as well as a few of the incisions.  (there were 5 total) He will get a majority of his feedings through this "G-Tube" also known as a "button".

We were told to head up to the pediatric unit and wait for him to be admitted there.  We got up to the PACU (Pediatric Acute Care Unit) at 8pm.  Basically when a child is not well enough to be on the pediatric floor, but not critical enough for ICU (Intensive Care Unit)  they are sent to the PACU.

This was the first time seeing the post operative, suffering child of mine.  Gasping with each breath, moaning and unable to open his eyes.  This was enough to tear down any wall of strength I may be known to posses.  Standing at his bedside soaking him in my tears I tried to sing him my lullaby which is always his comfort.  Chris and I, yearning to hold and cuddle him, stood there feeling helpless.  Suddenly that oh so popular feeling of nausea began to creep up on me and I had to find a restroom.

The most horrible sight awaited me in that hospital room as I returned from the restroom.  There stood my husband, the nurse, and my non-responsive child.  He had stopped breathing just as the nurse tried to give him Tylenol orally.   The typical "save all" of stimulating him, was not enough.  He was BLUE and not breathing,  The nurse called out "Get me an ambu-bag!!"  3 other nurses came running in, and Dr.s were paged.  Mommy and daddy stood in the corner looking on at their lifeless baby.  They watched him turn from blue and stiff, to completely limp.  Josiah was laid out on the bed, the nurses were talking loudly in code, squeezing the ambu bag (CPR bag), trying to resuscitate their patient and our son.  The lump in my throat turned into uncontrollable tears. Teeth clinched, hands held tight onto Chris, I fought back the urge to scream "BREATHE, BREATHE, BREATHE".  The stats began to rise and the nurses seemed more at ease.  Morphine was administered through his IV and he once again appeared okay.  Many different doctors, including some who were present during surgery, came to see him.  They ordered a chest x-ray, which was completed and read all in a matter of minutes.  Nothing appeared outside of the normal surgical and anesthesia related issues.  They continued to give him "blow by" oxygen (oxygen placed in front of the child but not forced in). Then it all repeated itself, each time they would bag him, get his stats up, then it would all happen again!  More doctor's arrived with more nurses and things quickly became more aggressive. A team of anesthesiologist came in and were preparing to intubate him (put a breathing tube in, to breathe for him).  I have never in my life felt more helpless and traumatized.  It was truly the worse thing we have ever experienced.  Hand in hand, shattered parents continued to watched, staying as far out of the way as possible.  We watched the numbers drop, his color change and the worry of  "are they gonna get him back?" "its not working!" "come on buddy, breathe" "its dropping again".  The feeling of standing by and watching your child slip in and out of consciousness is something I cannot even begin to describe.  At one point there were a total of 6-8 doctors and 8-10 nurses!

They stuck something in his IV to counteract the morphine and got him to breathe with forced oxygen through a nasal cannula. Only now he was once again in pain.  Then we were taken straight to the ICU (Intensive Care Unit) and they gave him a very minimal dose of morphine to help make him be more comfortable, but not too comfortable.  He started moaning again about 2 hours later and was having a difficult time breathing.  They gave him a Tylenol suppository to see if that would help with the pain.  An hour later he woke up and freaked out, he let out a cry and then stopped breathing and he dropped his oxygen level substantially. His "team" came rushing in and were able to get him back up in a good range.  They gave him another small does of morphine, as he was in obvious pain.  Trying to pull of his oxygen, leads and IV, he really showed his "strong man" side.  I stood at his bedside restraining him as we waited for it to kick in.

As we all know, Josiah has had many issues with Apnea.  These occurrences tonight seemed to be associated with a few things; enduring the surgery, having a breathing tube for hours during surgery, anesthesia, and the pain medication.  All of these things can aggravate his existing history of Apnea.  If he continues to have them and needing resuscitation he will be ventilated again (breathing tube back in to breathe for him).

It is currently 2:20am and for some reason the blog never shows the correct time.  We will see what tomorrow has in store for us!

Thursday is "Surgery Day"

As I sit here with mixed emotions trying to put this all into words, my hands are shaking.  We have known since October about this surgery and at times, been so ready for it.  Now the choice has been made, the OR is booked and suddenly it seems all so sudden.  I think it started to sink in when I found out that my baby boy would be in a cold, bright operating room for approx. 4 hours.  We have been through countless tests, procedures, studies and surgeries with our two babies...but nothing quite this long and no where near as invasive. The tiny hairs stand up on my body as I try not to cry, just thinking of the "what if's".

I find comfort in Jeremiah 1:5 "Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations."
and Psalm 139:16 "your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."  I have no idea what Thursday, or the days to follow, will bring.  I pray for comfort and to feel his presence, constantly!!!  I pray for patience in the physical and emotional healing phases and of most I pray that my God will continue to bless me each morning with the loving faces of my children.

His surgery will be Thursday morning at MCV.  They will call tomorrow afternoon to let us know the exact time.  He will be Dr. Lanning's first patient of the day and he is thinking it should be approx. 8:30am.  We will need to be there about 6am for paperwork, vitals and all that good "pre-op" stuff.  Then from the time they get inside his tiny body, begin the operation, to suturing him up, it will take 2.5 hours. However there is much time spent prepping him, anesthesia, IV started and critical recovery.  The total time will be about 4 hours.  4 hours of the uncertainty, 4 hours of pacing, 4 hours of being away from our child, 4 hours in the heart of a mother is close to forever!

I have learned in this tough season of life that it is okay to feel heartache.  There is a reason for this, God's reason.  For, not only does he know the plans he has for Josiah, he first knew the plans he had for me!  No one suffers in vain.

Ever read a verse and start to get "chills" just knowing that God lead you there...this was what I came across when I wasn't expecting it;
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."
2 Corinthians 1:3-4

2 sick kids, 1 mama!

Well, well, well...Miss Emily has tonsillitis!  Her tonsils were so swollen it was blocking much of her airway.  She's been coughing til she throws up for a while now.  Her fever has stayed below 100.2 and she is still able to drink fluids so that is good. 

Here is the problem....if Josiah gets sick it can be 10X worse than Emi, and his surgery would have to be put off for 4-6 weeks!  He is fussy, I checked his temperature to find he has a fever of 99.9.  He is always below 98.6!

My mother in law wants to take Emily to her house so she does not spread this highly contagious illness to her little brother.  She adores "meanmas" house, where she has her own bedroom and gobs and gobs of toys!  Mommy misses her :( I enjoyed having her home last night and loving on her but I am so afraid of what this could do to Josiah.

No one can take Josiah to get him out of these contagious elements though, because of all of his equipment.  So, off to grandma's Emily will go.  She is a good caretaker and I know Emily will be just fine, but theres nothing like "mommy guilt"

Dear Lord; please let this all pass, leaving behind no broken spirits!