Malachi Bracelets

*Don't forget to send pictures!! We definitely appreciate your support! Keep the prayers coming!

a good day

Quick shot of the cutest girl ever on our way out the door to church this morning.

She had to pack and bring her own purse...
Loving on her daddy...
I love this picture. Emma has an embarrassed "OOOHHH! Cute boy!" look.. Tyson is like 'Who me? I'm not doing anything!'

Thanks Papa for treating us to lunch today. Without hesitation Emma said "CHINESE FOOD!"
I like spending time as a family. It's much better than being home without Chi or at the hospital without Emerson. And either place is much better with John as opposed to without him. I was super proud of him today with how calm and collected he was doing his one-person trach change (the emergency trach change)!! He was great! I think he's actually better at the whole nursing thing that I am. I just want to be a mommy, not his mommy AND nurse. But, alas, I will do what I have to do in order to bring that baby home.
Yesterday marked FOUR MONTHS for this little man. What a fighter! What visible evidence of God's mighty hand of protection!! Today is four months at Riley Hospital. Hopefully we will have him home before his five-month b-day!

some pics of the day

We stopped at the library on our way home from the hospital. Emma got to do two of her favorite things...

puzzles...

and...

computer games!

Oh, AND she got a little snuggle time in with Baby Chi as she watched Diego.

Malachi had a rough night last night and was pretty tuckered at this point. His heart started acting up and was once again reaching a rate of 260 to 280 beats per minute. They hooked him up to a 12-lead EKG to get more defined readings of what was going on and he brought himself out of it after five minutes or so. It came back later in the early morning hours and they had to use the vagal manuever where they shove a baggie full of ice slush onto his face to stimulate a mammalian dive reflex which closes off the airway and causes the body to briefly stop breathing and react with bradycardia (slowing of the heart rate). They have once again increased his atenolol and digoxin (his main heart meds) and hopefully they can figure out what he needs in order to keep this from happening. It has been three or four weeks since his heart has done this. Even when Malachi is stable, he will definitely always be battling a congenital heart defect. He will have a "repair" at age 1, so pray that we can keep him "stable" until that point. I put "repair" in quotes because even that major operation will only be good for 5 to 10 years. When things like this happen, we are definitely reminded that our time with Malachi will most certainly be limited. Each day is a victory won. Each breath is a gift from God. We don't know if we have two days, two weeks, two years, two decades, but we will take whatever He gives us. Come to think of it, none of us really know how much time we have on this earth. I pray that God would save you before your time here is done. I pray that you would see already in the young life of our second-born how God has been at work from the beginning and sustaining Malachi so that His strength, His love, and His grace could be apparent to those we meet on our journey.

the girl is loved!

beautiful baby

It's always nice to see Malachi doing "normal" baby things. One of these things is chewing on his fingers! He loves just chomping away and it's encouraging that this has a consoling effect for him. I had a video, but accidentally deleted the clip from my camera.

He was wide awake looking at his toys hanging from the ceiling.
Another peek at the IV burn. It's looking MUCH better though!

This is what his heart rhythm looked like on the monitor when I arrived today. I hate seeing those crazy arrhythmias.Thankfully, about an hour later, it was back to a somewhat regular-looking pattern.
I rearranged the toys hanging from the wall so that he could kick, kick, kick! Not sure if he liked it or if it ticked him off... time will tell. Again, I had a video clip, but it was deleted.
They started trach collar trials today. He handled his first two-hour trial just fine! This is super encouraging. If he keeps it up and stays healthy, we MIGHT not have to go home with a ventilator! It's also one less tube that is weighing on him.
That's really about all for now... Hope you enjoyed the pictures.

first things first

Emma found the leftover fortune cookie we saved her from dinner last night. She ran halfway to the table, turn around, pointed her finger up at me saying, "Take this off my finger first?"

"Emma, is that a booger?"

"Yes. It is from my nose."

Running back to the table to retrieve the cookie and bringing it to me to unwrap, she then puts her other pointer finger up at me, "This one too. It is a booger."

(untitled)

Just a few things I wanted to jot down...

I am officially done with all my nursing check offs! That's right, today I did my one-person emergency trach change. Malachi wanted it to be as true to real life scenario as possible, so right before he decided to get crazy mad and turn bright purple in anger. After the fact, I was SHAKING!! I really hope that never happens when I'm alone with him. My voice was as shaky as my hands, but we both survived! John just needs to do his sometime before Tuesday and then we will be able to go through with our vent training (an 8 hour class). Malachi is doing pretty well with his CPAP trials, so I think they may move forward with a trach collar tomorrow. Good stuff.

So, I can't imagine that I've developed some crazy allergic reaction to something in the Infant ICU (our new unit) to cause hives, but I also can't imagine that I've all of a sudden developed this crazy physical response to stress. Any ideas? Taking generic Claritin for now and using anti-itch cream. Thankfully, this arm is the worst of it today. Just a few spots on my other arm/wrist, abdomen, and ankles otherwise.

Probable Discharge Date

Just got off the phone with one of the ladies helping get us out of Riley and get Malachi HOME...

We're looking at a discharge date of March 22nd or 23rd! That gives us about a month to get things all sorted out and nurses lined up and home care equipment set up, etc. etc.

I have so many emotions going through me right now, I have no clue how to express. I'm happy, but frightened. Smiling, but nauseated! We can do this. We can do this. Lord, help us do this!

Sibling Play Time!

Emerson's nose finally stopped running and she got to actually spend some decent time with her baby brother today! She was pretty nervous to touch him, but was definitely content playing with (more like AT) him sitting at the foot of his bed. It was super cute. I got a taste of trying to multi-task when taking care of Malachi to talk to her and keep her engaged or occupied in something else. A taste of what is to come. Next time, hopefully I'll handle it a little better than "Uh, Emma, go sit in that chair, mommy is trying to clean up vomit, uh, clean up baby chi." At home, I will have Dora in my arsenal *WINK*!

KNUCKLES! (this was completely of her own volition... super cute!)

Helping with changing the trach ties...

After today and seeing Emerson with her brother, I WANT MY BABY HOME!

Overall, Malachi seems to be doing well. He's been kind of pukey in the afternoons. I'm going to take a look at his med list and times and see if maybe that has something to do with it. He's mostly handling 12 hours of CPAP a day. He now is getting 4 ounces of food every four hours (still taking an hour for him to "eat"). Labs were drawn today for his immune system workup. Hopefully we'll have some insight into how suppressed/deficient his immune system is stemming from his absent thymus.

It's 12:03 A.M. as I finish typing this... Happy Birthday to me!

Oh, Bonnie!

Dear Bonnie,

Please do not die on us. We need you. Thanks.

Sincerely,
John and Marissa



(PS. Bonnie is our 1992 Pontiac Bonneville with over 215,000 miles on it that is randomly shutting off for John on his drive to work this morning.)

a better day

I love, love, love baby legs!
(especially when they are decked out in Iowa gear)

Bath time! He even got to be in a "tub".
Still not quite sure what's going on...
Mommy, what are you letting this lady do to me!?!?

So, John and I pretty much have all of our nursing check-offs taken care of (except for the emergency one-person trach change) which means we will soon be moving on to vent training and vent check-offs and that class is scheduled for next Tuesday! Things are just moving right along, it's amazing. We met with three different nursing agencies. Praying that we will be blessed to get the right nurses from the get go. Unfortunately, that is not usually the case. A girl can dream... (ha! I definitely never thought I would be dreaming for the perfect nursing fit for my baby... oh Malachi, how life as we know it will never be the same!)

New Stress Reaction

This...


and this...

are my new best friends thanks to this...
I'd show you the crazy spots on my abdomen, but Malachi completely stretched my belly and no one wants to see that ;)

It's hard to really tell from these pictures, but let me assure you, as the day went on they got worse... hives, hives, and more hives. I've got to find a way to relax! I received some b-day $$ in the mail today, so we went out for a date while my mom is still in town (free babysitting! not that that is usually a problem with Miss Emma). It didn't have the anti-hive effects I was hoping for, but at least I had some nice time with John. Unfortunately, they seem to have a snowball-type effect and once they appear, it's horrible. Itch and scratch and the worse they get. I've never had this type of physical reaction to stress before. Super red cheeks and now hives. I hope that's the worst of it!

Photo Shoot

Some quick pics of my favorite little girl that were taken today.





Emerson Grace, thank you so much for helping mommy and daddy keep what little sanity remains during the rough start your brother has had. We love you, love you, love you! You bring a smile to my face and much-needed laughter to my heart. God knew we needed a daughter like you!

hurting

When I decided to chronicle our journey known as Malachi, it was important to me that I be real. The rough times of this ordeal are just as important as the good--victories and setbacks, laughter and tears, excitement and fear. Right now I am afraid. I have pleaded to God to just make Malachi well. Make his pain go away. Make his life easier so that selfishly my life is easier. Let him be a normal kid. Let him have a normal childhood. Let him just be a baby. To all of these things, God replied, "My grace is sufficient for you, for my power is made perfect in weakness."

That should be enough. At this moment, I am learning how all-sufficient His grace is as I hang on to it with every fiber of my being. Right now I pray for grace as I grieve the loss of the "normal" child I had envisioned and for strength to take on the challenges of Malachi, who is anything but normal. I pray that God's power be evidently seen in my weakness as I grapple with what lies ahead for our family. I pray that God's grace would uphold me as I learn and love Malachi, adjust to bringing him home, balance time with Emerson, be purposeful in strengthening my relationship with John, and be a mom as well as a nurse to Malachi. Can I do this? No. Can I do this with the help of the Holy Spirit within me? Most definitely.

Am I at the point where I am completely willing and able to accept the new course God has laid out before us? No. Will I get there? Yes, eventually. As much as all these emotions and things that are racing through my mind and body aren't "true", they are definitely real and they definitely hurt. I think it will be healthy for me to get all of this out and dealt with BEFORE bring Chi home and have a whole new set of things to tackle.

I am thankful to have the privilege to cling to a God who is unchanging and always true. He is the sustainer of my life, every breath. He is all I need. There are so many changes ahead which I cannot begin to comprehend, but I am thankful for a Savior who is unchanging.

One day I am confident that I will be able to boldly proclaim this verse:
"I sought the Lord, and He delivered me from all my fears." (Psalm 34:4)

better not be talking about mommy

we have this white trash can in our bedroom... i was moving it around and collecting garbage throughout the apartment.

emma matter-of-factly said, "mommy. that daddy's white trash."

a good reminder

And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.
(Romans 8:28)

I was very grateful this morning to be able to attend the worship service at our Indiana home church. I have to specify "Indiana" because Willow Creek back in Iowa will always, always have a special place in my heart. Anyway, it was great to see people and interact with those praying for our family. It's nice to know we haven't been forgotten. I know I know, there are tons of people who daily check in to see how things are going and who daily keep our little man and our family in their prayers, but it is very very easy to feel alone and isolated in this journey at times. Even for John and I as a couple, if we don't purpose to keep lines of communication open it is easy to withdraw and try to do this on our own--it doesn't work well that way! I know because I've tried.

Anywho, back to the service. I think God knew that I was going to be in attendance at Calvary Baptist this morning because there were a few things that I really needed to hear. I was quickly reminded that there is power behind God's word. His will for my life is not just wishful thinking, but rather my life is woven together in such a way that will ultimately bring glory and honor to Himself. Not only that, but for those who have given their lives to God, the Bible says that ALL things (and with God, "all" means "all") work together for good.

There have been times in my life, especially in the past four months where things haven't looked pretty. Things have been hard. I have been stretched. I have grown. I have felt small victories, only to be met with another huge setback. I have seen horrible pain in the face of my little baby. I have seen Malachi look at me with desperation as if he was saying, "Mommy... help... please" at times when he has been intubated (unable to make a sound) and too sick for me to even hold in my arms. Those times of heartbreak have just as frequently been met with a good, loving God who is working all these things to bring Himself glory. Not once during this time has God not been on His throne. Not once have my circumstances or Malachi's condition been apart from God's control. Not once has God left our side. He has promised to always be with us.

I am content in trusting that God is true to His Word and joyful in the fact that He will never, ever leave us or forsake us. I am not sure how much more heartbreak this mama can endure, but I KNOW that I wouldn't have made it this far without the love, patience, gentleness, and grace which He has so abundantly supplied during this very, VERY trying time in the Sharbaugh household.

Emma: This Baby Chi's!! (regarding an object clearly not his)
Daddy: Uh... who's is that?
Emma: Mal. A. Chi's! (practically rolling her eyes)

hard to see in a list

The following is a post I just made on the CHARGE Syndrome forums. Crazy to think of all the things our little guy has battled, is battling, and will continue to battle for as long as God keeps him here on this earth. I was talking to a friend and she said, "I'm sure even the other charge moms feel bad for you guys!" She meant it with only good intentions, and I think I have to AGREE!! Each breath Malachi breathes is a victory--a small victory, but a victory nonetheless! I find peace in the fact that God knows Malachi to his very core and loves him more than I can even begin to imagine. I can only trust that He has BIG plans for furthering His kingdom through the life of our fighter! There is no other reason that He has protected Malachi thus far.

Malachi has the following things associated with his CHARGE Syndrome. Can
anyone direct me to other chargers with an overall similar condition? I
understand that there are some who didn't make it for long, I would still be
interested in hearing their stories as well.

*Colobomas of the optic disk (blurred vision/blind spots--hard to evaluate at
this age).
*Heart defect (initial diagnosis of aortic atresia, ASD, and VSD. Had a stage 1
norwood repair with sano shunt. had a later surgery placing a BT shunt to help
with pulmonary bloodflow. will have a heart "repair" at age one)
*Atresia (aortic atresia, esophageal atresia with tracheoesophageal
fistula-repaired, bilateral choanal atresia)
*Genital abnormality (micropenis, undescended testes)
*Ear deformity (outer, middle, and inner ear abnormalities deaf or hard of
hearing)
*Kidney abnormality (VU reflux)
*Brain abnormalities (severely thinned corpus callosum, bilateral frontal lobe
bleeding, atrophied white matter, probable moderate mental retardation).
*Seizures from prolonged hypoxemia.
*Missing thymus (probable immune deficiencies)

(those are just the "major" things)

Thanks for any input!

road to home

So we're officially on our road to home! Hopefully just 3 or 4 more weeks now! Can you believe we've been at Riley, split between home family and hospital family, for over 16-1/2 weeks! Obviously, Malachi needs to behave (especially his heart), but here is what needs to be accomplished by John and I before we can bring baby HOME!

*Nursing Check-Offs:
Trach classes (two sessions--not mandatory, but definitely proved helpful)
Two-person trach change (pulling trach/placing trach)
One-person emergency trach change (*pretty much only thing we each have left to do*)
Trach care (cleaning trach hole (stoma) and changing dressing)
Medication (name/usage/side effect awareness, drawing up meds)
Food administration (measuring, using feeding pump)
G-Tube care (cleaning site)

*After all that is completed, we have our official "discharge planning" to set up the following:
*Ventilator Class (8 hours)
*Ventilator Check-Offs (8 hours)
*8-hour nursing shift (as individual)
*24-hour nursing shift (as individual)
*Discharge date!
*Interview home nursing agencies, get all that set up.


For those of you with home pediatric nursing experience in the Indianapolis area, do you have any input or opinion regarding Tendercare, Loving Care, or Pediatric Nursing Specialists?

For those of you with children in a fragile condition similar to Malachi's, do you think 8 to 12 hours of day nursing help is enough?

For those of you with home nursing help, any tips for adjusting to having a relative stranger in your home for multiple hours a day? Also, any questions I should be asking during our interviews with the different agencies?

For those of you that have been following our little man from the beginning, can you believe that we are even going to be able to bring Malachi HOME!?!??! Praise be to God!

just pics for now

long day... i'm pooped! pics for now, post will follow either before or after our hospital visit tomorrow. depends how much work i have in the a.m.

emma: using grocery bags as boots and mittens... (not to worry...i don't usually just let her play with plastic bags) **edited to add: she was just pretending these were her boots and mittens**

mommy doesn't particularly like the headband look, but i need it to hold on my gauze.

the tissue surrounding his IV infiltrate ("IV burn") has officially deadened. burn unit has come up to advice nursing how to proceed with care. poor guy, i'm sure the surrounding area is tender. it's swollen above his ear to the right of the area quite a bit (hard to tell from here)

Malachi was up this morning for a while and was up for a little bit when daddy came by for his visit... otherwise, he was a sleepy boy! (maybe a growth spurt?? time will tell)

No one else...

Marissa, Mom, and I all went to a "trach" class today. I had to miss the first one on Monday because of work so even thought this was Part II it was my first class on the matter. I had already been apart of a trach changing. I pulled the old one out and the nurse replaced it with a new one. But sitting there listening and watching it can be a daunting thing. And this is just one small part of the training we will be going through before he goes home. The process itself isn't very long. It's the strangeness and importance of it that had me thinking. Life for the last few months has been anything but normal. At times I had had realizations that we will never have a true normal again. We will have our own new "normal." I mean bringing home a newborn can be tough enough. We wont just be changing diapers and feeding bottles of milk.

I am actually more surprised and haven't fallen into a state of panic now that him coming home is finally on the horizon. Oh frankly I am pretty nervous. Yet I look over and I see Marissa and I think… Wow there literally is no one else that I could go through this with. Not only do I love her so much but she is simply amazing. All of you that read this blog know this. You read what she writes and see how she handles things. She is trying so hard and I praise God for her. I know that for a long time Marissa and I won't get out much. It will almost be like we are shut-ins. This is also a scary thing. Many families just wouldn’t last spending that much time with each other. And Marissa and I have our moments, but once again I praise the Lord that she isn't just my wife. She truly has become my best friend. It wont be easy. There are good and hard times ahead, but I think I know how Paul felt when he wrote Philippians 1:3-7. Its times like these that I think you can really get to know someone. And since all this has started I feel more and more blessed everyday.

So Babe, there is no one else that I would want to go through this with and no one else that I could get through this with. I love you and I thank God for you!

good to see faces

We had our first official meeting with the Infant ICU staff this afternoon. It was good to be able to voice our concerns regarding the not-so-very-good transition. The attending physician was in agreement with how horribly everything went down. At least they are aware and understanding of our concern. Before he can go home he will get another echo to evaluate his heart, have some more hearing studies, another echo to evaluate heart function, immunological workup because of absent thymus, and his 4-month vaccinations. The main thing for us to get him home is our parent training. We need to complete all the trach/g-tube check-offs, vent class (he will be coming home on a ventilator), vent check-offs, an 8 hour shift on our own, and a 24 hour shift on our own (John and I each must do these separately). The majority of his minor followups (neurology, genetics, urology, ophthamology, audiology, etc.) will be done at 6 months of age. The major followups (cardiology, developmental pediatrics, pulmonology, etc) will be done at least monthly from the time of discharge. We also need to get home supplies and home nursing lined up (hopefully 8 to 12 hours a day) and we will need to decide if our preference will be nighttime help or daytime help.


A good day overall, though. I got a lot of my MT work in, picked up the house, spent quality time with Emerson, made it to the hospital to meet with the docs, played with Malachi, did some trach training, came home to an even cleaner house (thanks, girls!), and enjoyed pizza and a movie with our home family. One day, our hospital family and our home family will just be our HOME FAMILY! One day... If Malachi behaves himself, it just a matter of getting all of our training in and getting comfortable with his new accessories. Four to six weeks!?!?!

Sounding like mommy.

Overheard as I was cleaning out the closet in her room while she was stuffing as many toys as possible in the bottom of her toy stroller...

"Now, we're not going to lose these, right?? Right."

a girl and her hints

Upon finding her Dora DVD from the library on the floor...

Emma: Oh, Daddy... what's this??

Interpretation: Interesting discovery... maybe we should watch it.

First Trach Class

Guess what I got to play [practice] with today...I bet you wish you were there .... okay, maybe not. Unfortunately (but also fortunately), session one seemed to be pretty much review of what I already know and am comfortable with regarding Malachi's trach. Don't get me wrong, it still weirds me out, but I'm getting more comfortable with it. I will finish my "formal" trach classes on thursday, most of which I believe will be new information. When I got into the hospital today, the nurse was doing a hearing screen. I didn't quite get a clear answer from he regarding what she thought it revealed. We are assuming that Malachi has very minimal hearing at this point from other CTs showing malformed and underdeveloped bony structures of his inner ear. They also condensed his feeds to over one hour (he was tolerating over 90 minutes up to this point). The eventual plan is to get him down to at least an hour, then work on increasing the amount of his feed (he's currently at 85 ml--almost 3 ounces), and when he tolerates the large amount changing feeds from every three hours to every four. If they can get him to this point before heading home, AMAZING!!!

Occupational therapy stopped in today while I was there. They are working with him in regard to tracking objects left to right, right to left, and up and down. He does left to right pretty good, but the rest not so much. They want him to grasp objects, bring his hands together, suck on a pacifier, and tolerate 5 minutes of OT stimulation. He's not there yet. He did, however, enjoy his bath given by mommy and some boppy time! The nurse allowed me to do his bath, g-tube care, and trach care completely by myself. It was wonderful to not have someone hovering while I learn to care for my babe.


Tomorrow we meet, Lord willing, with the doctors and nurse practioners currently involved in Malachi's care. Hopefull, we will be able to get on the same page and see where we are and what they think regarding our little man!