This rollercoaster we call life....

As always, in these trails I am reminded that the only thing I can lean on is the trust I have in Christ.  I have no idea why we have been chosen as Josiah parents or why we have been given these challenges but I do know that I will always "Trust in the Lord with all my heart, and lean not on my own understanding."
Proverbs 3:5

Sunday morning my fears were turned into reality, yet again.  Getting ready for church, I take my time and for once do a little something with myself.  See, on this particular morning Emily had enjoyed a slumber party with her "meanmaw" (Chris' mother) and I only had one little person to get ready.  So I decided I would take advantage of the time given and take a shower, get dressed and throw in some housework.  Josiah was sleeping the morning away and I was getting much accomplished.  Finally, we were down to the final remaining minutes of the morning and it was time for him to wake up and eat so that we could make it out the door and into God's house on time.  As I went into his room with all confidence of starting his morning, I saw what I had feared all of his life.  So many mornings I opened the door to his room with a lump in my throat, not knowing what I would find.  Always welcomed with big round eyes and a open mouth smile from strong man, those fears had finally ceased and we were living a "normal life".  Finally his past was behind us and we were moving right along on the road of "healthy baby boy".

I beebopped right on in that morning saying "time to wake up buddy", spirits lifted from a rejuvenated morning. That is when I saw my perfect little guy back in a state of which I had once become familiar with.  His arms were dark in color and his face and neck were as grey as ever.  His body was still and his eyes were shut.  I ripped him up and started pounding on his back, screaming in fear.  I did not know how long he had been this way or if I would get him back.  Every possible scenario ran through my cluttered mind. If only I hadn't spent the morning in vanity, if I would have just gotten him up as soon as I was up, if only...if only...if only.  I started to panic as I held his lifeless body across my forearm trying to awake him.  I went and grabbed my cell, dialed 911 and through my screams and tears the dispatcher was able to understand the severity.  She dispatched ambulance and engine.  I laid him down on the ground and continued to stimulate him vigorously. His eyes popped opened and he was fighting for a breath.  Another 10 seconds later he took that first breath, followed by approx. 2 minutes of labored breathing.  We checked his pulse and respiratory rate and EMT came rushing in.  His color started coming back, we were taken by squad to Chippenham.  It was about another 30 minutes before he got his true color back in his extremities. His usual team was awaiting our arrival in the emergency department. There is a certain comfort level for a mother when the professionals who are caring for your child, remember him on a personal level.  They were able to pull his entire history up through memory and his extensive record.  An x-ray was done to check his throat for any abscess or growth.  At that time, the swollen adenoids were seen and we began to understand where this apnea spell may have come from.  We were transported to intensive care, where once again we were comforted by our Chippenham family.

Over the past few weeks, Josiah had been having blue spells again.  They were few and minimal.  Each resulting in self stimulation, with no assistance.  With the exception of one requiring me to intervene.  We just shook those off and moved on with life, because for Josiah, this was not a showstopper.  I would call the doctor, just to inform them of the event and was told the same thing each time "just keep an eye on him".  All in all he was fine, progressing perfectly and really a whole new child the past 3 months.  We thought we were finally in the clear!

They gave him 4 rounds of Decadron (a medication administered through his I.V.) to relieve the swelling and obstruction of his airway. He is back on his apnea monitor and will be on it for while.  He had another upper g.i. study this morning to confirm that this life threatening event was not related to obstruction in the esophagus due to reflux.  Aware of his surgical procedure we were all confident that this was not due to his previously severe reflux but needed to rule it out.  Now he will have another sleep study done.  He had one in October and it showed a lot of apnea.  Central (basically the brain "misfiring" mainly do to immaturity) and obstructive (reflux, swollen adenoids, nasal polyps and possibly scar tissue from being intubated and the nasal feeding tube) This sleep study will be the same sort of test, it will show any apnea; the severity and the cause.  Then we will know how to move forward.  If it is central, he will be placed on medication.  If it is obstructive, his ENT specialist will go in with a scope and see what the blockage is and remove it. 

There are no openings for polysonogram tonight.  They are hoping for a cancellation tonight and we will know by 4pm.  If there is not a cancellation, then we will be discharged with the apnea monitor and have to come back in for the sleep study.  The results will be sent to his pulmonologist and he will let us know which direction we are headed down.  If surgery is needed, it will not be until next week.  Josiahs ENT specialist is out for the week and he is the only one we trust to operate in that specialty.

It has been a very challenging trial but, the apostle Paul has taught us;
"WE KNOW THAT ALL THINGS WORK TOGETHER FOR GOOD TO THOSE WHO LOVE GOD, TO THOSE WHO ARE THE CALLED ACCORDING TO HIS PURPOSE." Romans 8:28
I have been able to show God's love to the other mothers in the Ped. ICU.  There was a little boy, 3 years old, that has a g-tube and similar complications as Josiah.  I sat down and stitched a g-tub pad for her Sunday night.  I have decided these pads I have been given the talent to make, are going to be my witness to other ailing mothers.

Can a burp be an exciting thing?

...absolutely!!  I never thought I would be so excited to hear a burp escape from the mouth of an 8 month old.  That's right, Josiah is finally squeezing a burp out now.  Lately after Josiah drinks his 8oz. he is expressing a small burp.  It's not huge and he still requires being "vented" with the tube to get the rest of the air out of his belly.  It is definitely progress and a leap in the right direction!  It has been almost 4 months since surgery and his surgeon was not giving him much longer to burp before having to go back in and loosen the wrap that was put around his sphincter.   Now that he is able to do so, the end is in sight.  Once he is able to expel the air after each feeding without needing to be vented, he will no longer need the tube and they will begin the process of removing it.  Instead of having the g-tube removed and suturing up the hole, layer by layer, they are going to try to let his body do its job and close up on its own.  They will put in a smaller tube and allow the body to close around that, then a smaller one and a smaller one until they have the smallest one in the wound.  Then they will remove that one and cauterize the hole to close on its own.  This will be the best option for Josiah, since we all know how he handled surgery and extubation last time.  If this does not work, then he will have to go under and they will suture up each layer from the stomach lining all the way to the epidermis.  They are expecting he will have the tube at least another 4 months.

Last week we went up to the hospital just for a visit.  It was so nice to see his NICU team and celebrate with them for all of his progress.  His neonatologist  Dr. Farhi was happy to see him and his favorite R.N. Renee Marten, passed him back and forth just loving all over him.  They showered him with new wubbanub pacis (the pacis with the animals attached that he uses) and sissy got new baby bottles for her dolls. If you have a NICU graduate, take that trip down memory lane and reward your child's team with a visit from their once tiny patient.  I think it is also healthy for mommy to visit and turn what was once a depressing, scary, and somber place into a happy one with reason to rejoice.  It was refreshing to make new memories with his NICU family, ones filled with excitement and encouragement on the journey we have taken and what our future holds.  We love them and they will always be in this mamas heart, heroes in scrubs.

 

Mr. Josiah is really growing!  Sitting all on his own now, makes him look like such a big boy.  Every milestone strong man reaches, is another reason to praise God.  This will all be a memory and a story to tell, as we watch our little boy continue to thrive.  One day he will be eating everything in sight and winning burping contests with the guys, and I will look back and smile the smile of a proud mama.  A mama, who at many times, wondered if her little boy would get a chance at a normal life.

The kids have a new friend.  The "puurrr-fect companion".  We had been talking for a while about getting a pet for Emily.  We knew a dog would be entirely too much work and added stress so we thought about a kitten and the more we thought it through, we decided that a kitten would not be the best match either.  Perhaps a young cat.  One that has calmed down out of the kitten stage but still young enough to want to play.  We checked out a 7 month old kitty at the Richmond SPCA.  On two different days and a total of about 5 hours, I watched this cat.  Studied his behavior, personality and habits and knew for sure that he would be the perfect addition!  The SPCA is really a wonderful place, they have 3 different rooms called "catillions" where they put 8-10 cats together all day.  The room is filled with toys and tunnels and cubbies, a really neat place.  Like Chuck-e-Cheese for felines!  You can even have your child's birthday party at the SPCA, I happened to be there during one of the parties and saw how the cats acted when the room was suddenly filled with 10 little boys and girls!  Most of them ran, some stayed but weren't sure and then there was "Tobias" the one I had my eye on....he went straight up to the children and allowed them all to pet and play with him.  He just layed down and sprawled out on the floor.  That was when I knew, he was coming home with me.  The first time we went, we took both kids and the 2nd time; just Josiah.  Having them in the enclosed room for hours with these cats, would have exposed any allergy either of them may have had to the animals and there were no symptoms.  We also knew that we could take the cat home for a 30 day trial period and if it didn't work out, we could bring him back.  That was not going to happen, but it was nice knowing we had the option.  Emily named him "Gobi" after her pawpaw's fish.  He has been the perfect pet since the moment we got him home.  He is big for his age, he looks full grown but is the same age as Josiah.  Gobi is so tolerant and affectionate.  He is so wonderful with the kids and the torture he endures.  Josiah goes straight for the ears and tail and the kitty is happy to lend himself as a toy LOL!  Of course I always put a stop to it, as Emily is learning he is not a baby doll.  He has no reaction to her carrying him around the house but she is learning that mommy isn't allowing it.  Don't worry, we know what any animal is capable of and we practice all precautions.  The kids doors are shut at night and naps and their monitors are turned on so that we can still see and hear them.  I would never trust the kitty to be alone with Josiah, because even as sweet and perfect as he is, I understand the risks.   The litter box is upstairs, where the children are not allowed.  I have never seen a more perfect animal.  His only flaw....thinking he can sleep in between mommy and daddy :)

going for the ears!

"cuddling"

Trading in ice for wood....

So after 6 weeks of ice skating, we have decided to try something new.  Emily is now roller skating, she likes it but seems to be a little bored.  Guess its not daring enough for my little Evil Kenevil.  Most of the time she skates around with her hands in her pockets.  She does however love the dancing at the end when they take the skates off...and the snack time is the big win! Her feet aren't big enough for the "fast skates" so she has to use the size-able plastics which just aren't challenging enough for her.

Enjoy the videos!

 

NO more monitors?!

 

Could it be?!  Josiah is free of cords, tubes and monitors?  Well not quite, but definitely the closest he has ever been to freedom from devices.  He has been off the Apnea/heart monitor for a little while now and the Dr. should be discontinuing it by the end of the month.  Unless something shows up on the last reading.  We should know within a week.  I remember the day Emily was discharged from use of the monitor, it was 2 weeks past her 1st birthday and I was a nervous wreck!  I had an awful time without the "comfort" of being alerted.  Its amazing how much my faith has grown in 2 years.  I really feel at peace with not having a monitor on him.  I am able to rest easy, knowing that God is taking care of him.  I feel rather confident with Josiah's abilities now.  I don't stay up all night staring at the monitor or counting each respiration these days.  That's not to say I don't have the sound monitor up to max volume to hear his every move or that I don't check on him before I go to sleep.  I am still a concerned mom, I have heard the term helicopter mom used before and I feel that is appropriate for me.  Hey, I don't mind being labeled as a hoverer.  Learning that I am not the one in control has actually made life easier.  I cast my worries and uncertainties among God and I am able to sleep without the fear that no one is watching Josiah.  I am actually excited to return the monitor, it defines his progress!

 

 The gastric tube will remain part of this family for at least another 4 months, but probably another 6-8 months.  I will be happy to part with this member, when the time comes!  Right now it is utilized about 3 times a day for burping and I usually give him his medicine straight through it.   Sometimes I wish 2.5 year olds had little holes in their bellies for medicine insertion HAHA!  Tuesday we got a new tube delivered.  This one is called a "Mini" the previous one was a "Mic-key", yes I do see the humor in this.  The Mini is designed to be lower profile, so that he cannot grasp it as easily and so tummy time will be more enjoyable.  Its flexibility puts less strain on the tissue around the site, in turn, causing less irritation.  The battle we were fighting against the granulation tissue is calming down, in our favor.  He was having to be cauterized once a week for the mass amount of growth around the site.  I am happy to announce it has been 2 weeks since last being cauterized.  Tissue is forming but it has not gotten out of control.  We will probably have to take him back up to the Children's Hospital next week to have it burned off.  Once every 3 weeks is a huge improvement though!

 

My abilities as "strong mans mama"  were tested Tuesday when we had to place the new tube.  The process was supposed to be a simple and quick one with minimal stress and pain....yea well, by now you should know, that's not how we do things.  That morning with big sissy asleep, mommy and daddy sterilized a section of Josiah's room.  Gathering all supplies and laying our son down on sterile mats we turned a small section of our house into our operating area.  I scrubbed in and prepared for the quick procedure.  Finally, we were ready.  With Chris by my side holding Josiah's arms down and talking sweetly to him, I removed the tube and cleaned up the site.  Now I was looking down into a hole in the abdomen of my 6 month old son.  I removed the new tube from its sterile packaging and prepared it as instructed to insert into that crater.  With an anxious heart I realized it was not going in all the way.  Having been informed of all the negative endings in a site closing up, I began to get more stressed.  Grabbing my phone,  I called upon my 3 "fall back" nurses for support.  Being that each of them work day shift I could not get anyone on the phone.  I then went through the boxes and boxes of medical supplies that line Josiah's bedroom and pulled out a sterile nasal tube.  I put the lubrication on it and working it in, I was able to see that the tunnel from abdomen wall to stomach, was still intact.  This was reassuring, we then knew we just had to work the g-tube in.  I attempted widening or dilating the site with the NG tube so that we could get the much larger gastric tube in.  Still to no avail, we decided to pack the site with gauze and take yet another $1,000 emergency room trip.  Just then, Chris gave it an attempt and with a little force "popped" it right into place.  I cleaned him up and with my trusty med tape and gauze, got him all put back together.  This is a process we will have to repeat, as the child grows, the stomach grows but the tube does not.  This is his 3rd tube since the operation in January.  The parents of g-tube patients are trained and expected to preform this procedure at home.  However, we are not "trained" on how to handle 2 year old sissy waking up and standing at the doorway singing sweet lullabies to her ailing brother.  Its amazing how quickly you put on a happy face and toughen up when you need to be "strong" for your kids.

                                    

SO, now weighing in at 14.1 lbs and 24.5 inches, Josiah is really growing.  He has finally outgrown many things and has passed them down to babies smaller than he.  Something that for a while, seemed impossible!  He is wearing 3 month clothing and size 1-2 diapers.  He has a head full of hair, proof that he is getting the nutrition needed.



Through all of this, I am that much more certain of where I am being called to.  I will be a RN in the NICU I am 100% sure of my calling.

Don't take my tonsils out of my ears...

Miss Emily has been suffering with enlarged tonsils for quite some time now.  Last January, at the young age of 18 months; she required an adenoidectomy.  After having a bronchoscopy we learned that she needed her tonsils out as well.  However, 18 months is a very young age to have adenoids out and it is definitely too young to have both removed.  So we proceeded with the adenoidectomy.  Now, a year later, she is still plagued with fatigue from not sleeping well throughout her nights. Her tonsils were such a large obstruction in her airway that they needed to be removed.  We have high hopes that this will correct a lot of issues.  It was suggested to us that perhaps she does not have Asthma but in fact her intake of oxygen is just hindered from the obstruction.

Not the best picture to capture the size, but it gives you an idea.

I was more nervous going into this operation than any other time.  Mainly because of the unfortunate events that took place in Josiah being extubated in January.  When you stand bedside to your child going in and out of consciousness in recovery, you become anxious to future medical procedures.

I had prepared Emily as best I could.  Telling her imaginative stories and turning a scary surgery into a walk through a dreamland fairytale.  Her only concern was, "Dr. Salley isnt going to take my tonsils out through my ears right?"  He assured her he would leave her ears alone :)   She will forever have the day burned into her memory, that Dr. Salley removed the impacted wax from her ear canal.  She was not fond of that moment and lost confidence in the Dr. that mommy and daddy love and trust!

So She had the tonsillectomy Thursday February 24th.  She had the full attention of all the doctors, anesthesiologists and each nurse during the procedure and in the progressive care unit.  Each medical professional was on their guard as they had been informed of her Apnea history.  In past procedures her oxygen saturation had dropped substantially and this was something they were also aware of.

Before Surgery

 Dr. Salley removed the tonsils and when he checked the adenoids he saw that they too had re-growth.  He burned those off as well.  She did wonderfully throughout the entire procedure and recovery.  I was a proud mama to be told she was "best child of the day" haha The tonsils were sent to the lab to be checked for abnormalities, as a precaution. Dr. Salley said they were even larger than they looked and he knew they looked pretty large before removing.  An hour after surgery she was eating popsicles and drinking tea.

1 hour after surgery

Now, 2 days later she is feeling worse.  On Tylenol with Codeine every 4-5 hours, she is in as little pain as we can help.  It shows as the medication is wearing off, she starts to hurt a lot more.  She is not wanting to eat or drink, but with some coaxing we manage to get enough in her to keep her hydrated.  A very sleepy and whiny little girl we have, wanting my constant TLC.  Which I am so willing to give!

pitiful little baby

2 lbs 2 inches 2 months

6 Months

It is impossible to put a price on our children, that much is true.  If we could put an amount to them everyone would be astonished at the running total.  We are blessed to have insurance and an income and grateful for payment plans with providers.  I have accepted that we will never be free of medical debt and even if our checking account isn't full our hearts are!  Children are such a blessing, healthy or not.  I believe our children are testimonies of God's love and his plan for each of us.  He will provide for us and we will never be given more than we can handle. This will all be a distant memory soon and the medical bills will eventually stop coming in!

One less piece of medical equipment to pay for monthly.  Josiah has been discharged of his feeding pump.  He is taking all feedings through the bottle!  His G-tube is still being used after each feeding to "burp" him.  Not being able to burp on his own, we have to release the air through his button.

Another huge milestone for Strong Man; his doctor has ordered that we must start him on solids.  I was very reluctant to start this process, however, she expressed to me that there is a small window of opportunity in 4-6 months.  If we held off on introducing these foods he could develop a feeding aversion.  The last thing we need is to further complicate his feeding progress.  So, with that being said I am happy to report that Mr. Josiah enjoys his food!

We started him on sweet potatoes.  The 3rd attempt was when it "clicked" and now he is doing great!

Sport'n his "rocker wear

His 6 month check up went well.  He now weighs 13lbs 1.5oz which puts him in the 1st percentile for weight.  For those of you who do not have an understanding of percentile; basically 50th percentile would be "average size".  So by weight, 99% of babies Josiah's age are bigger than him. HAHA  He is 25.5" long (17th percentile).  He has gained 2 lbs and 2 inches in 2 months!

Other than his inability to burp, his only issue is the granulation tissue that keeps developing around his tube.  We have to keep getting it cauterized.  It is so painful for him and makes him miserable the entire day.  There is nothing we can do, outside of what we are doing, to keep this from happening and only time will cure it.

I know this kid has made many cry, now it is time for a laugh!!

He is such a strong little guy and is this family, you have no other choice!  I am doing a separate post in reference to his strong sissy's most recent procedure.

Bittersweet Maturity

My apologies for letting so much time pass between posts!  Josiah is now weighing almost 13 lbs.  This is such a bittersweet milestone of maturity for us.  I am excited over the much anticipated growth, yet at the same time, the realization that my baby is getting bigger is a certain sadness any mom can relate to.  He has found his little feet and grasps at them with his chunky, dimpled little hands.  Just another action that brings a smile to my face and joy to my heart.  With swollen little gums, it is apparent that there are pearly whites ready to pop out in the near future.  Josiah has become more active and alert and engages with his surroundings.  He has already learned a defense against his predators... aka: sissy!  Pulling hair and pinching cheeks is his form of protection to force Emily to retract.  She will tell you "sometimes I love my brother so much, I have to go to time out".  The two certainly have quite the connection, he loves to look at her and "talk" to her and she loves to smother him in kisses and mother him with love.

Granulation tissue is still our biggest issue right now.  We were back at the Dr. Monday after his home care nurse (and girlfriend hehe) suggested that it may be infected.  He is on Bactrim, an antibiotic that is given twice a day.  I felt guilty that he was in pain and there was something I could have done to prevent this.  However, his Dr. assured me that there is nothing further I can administer to him in prevention.  We clean the wound once a day and change the dressing twice a day.  She said it takes a few months for the skin to "toughen up" to the foreign object and the open wound.  We are going to the Children's Hospital this afternoon, where he will have to have it cauterized again.  I am dreading this procedure, yet I know it will make such a positive difference in his healing.  This will be the 2nd time with the silver nitrate. 

a small amount of granulation tissue, around his G-tube.  It has spread out further and now bleeds.

 Friday morning when I was cleaning his site, the tube pulled straight out!  There is a balloon on the inside that hold the tube in place.  It is known to deflate or pop and come out.  There is such a short time frame in getting the piece back in, before the opening starts to close.  We have been warned on all the bad things that can happen from the tube backing out.  Such as the stomach detaching itself from the abdomen and/or the site closing quickly.  I wrapped the site and got him straight to the E.R.  Bringing along my own back up tube and supplies I was prepared for the procedure.  All I needed was a trained professional to insert it.  Once the Dr. began it became clear that the tube was not "sliding in" as expected.  They had to dilate the site to get it in.  There were a lot of tears, screams and blood.  Nothing to numb the pain, except the singing and cuddling of this mama.  After she placed the tube back in she inflated it with air.  I was concerned by this, as it was explained to me that you never inflate with air.  Air can escape and the tube will not be secured in place.  I was told that it should be inflated with water.  I am normally the quiet type and never try to tell someone how to do their job.  When its my child, I become a totally different person!  After contemplation I could not fight back the concerns so I went into the ER physicians office and expressed to her my understandings. It appeared she was almost embarrassed for her misapplication and was very apologetic.  She then ordered one of the nurses to retract the air and administer 5mls of sterile water.  He was back to eating a couple hours later.  He is the most resilient person I have ever known. NOTE: I am now trained in how to insert a new tube myself, at home.

The shot Strong Man was getting every 4 weeks is called Synagis http://www.synagis.com/    As of January 1st, we had some insurance changes like most Americans and now the very important vaccine is not covered under our provider.  To pay for the shot out of pocket, would cost over $1500 every month.  More than our mortgage!  It is not 100% affective against the virus and his Dr. said it would not be worth the cost, when there is nothing that is 100%.  Well, prayer is the only thing I know of that is 100% affective and it is paid for :-)  We will continue to pray for his health and that he remains resistant to the virus and any other bug or infection which would jeopardize his lung function.

Mr. Josiah will be 6 months old on Sunday!!  We have endured so much in the past 8 months (considering the complications during gestation.) It leaves me inspired to look back on where we have come from in such a short time frame!