Friday, April 30, 2010

mama should take a lesson

when wearing heels...

remember your helmet...


On a side note, we cannot even begin to express what a blessing it has been to NOT have to worry about meals most of the week! Not only that, but we're not having to extend the waistline or spend an arm and leg just picking things up on the way to and from the hospital.

I went ahead and extended the meal prep calendar because a few people have recently asked me when they could bring us a meal. Well, here's your chance! Just follow this link and pick a date. On the upper right hand corner, you can click "meals received" to see what has recently been brought.


you can also click on the following link or just copy/paste:

Where We Are

Basically, Dr. N (immunology) told us there is no worldy reason that our son should still be living, let alone be in any sort of "stable" condition. The first time Dr. N laid eyes on our precious baby a month ago, he prescribed some prophylactic (preventative) medications to help his body fight off different types of infections. At that time, he didn't think any of these measures would really give Malachi a fighting chance. We can safely say that Malachi is only surviving because God has chosen to sustain him.

Not only is he surviving, but right now he is:
**not in constant pain (he definitely hurts at times and he is uncomfortable and I haven't seen him smile in at least three weeks, but you can tell that at times he is at peace);
**he is mostly breathing over the ventilator (the machine is not taking many of his his breaths for him.
**beginning to really track items (toys, etc.) with his good eye, even with limited vision.
**mastering bringing hands to mouth, actually sucking his thumb, and purposefully bringing his hands together and those types of developmental things. (most other 6-month developmental things are contingent upon hearing, which Malachi doesn't have... also, he's obviously behind with mastering head control, rolling, pushing himself up, sitting, etc. since he's been in a hospital bed for so long)

All that to say, Malachi has come a long way and has already exceeded the expectations of many. However, he is still very much in critical condition. On his 6-month birthday, we were informed that Malachi cannot create his own T-cells. This is obviously crucial to his survival. The most probable outcome is that Malachi will die of an infection before his first birthday--news that absolutely no parent is ready to hear. We have obviously gone through a roller coaster of emotions lately and have mostly been out of sorts, not really knowing how to comprehend and digest all of this.

Also, we need your prayers and support more than ever. Medically, there is no reason that Malachi hasn't already been attacked by a fatal infection. God has a purpose for our baby and we are completely overwhelmed with the responsibility that comes with being a steward of His child. If you would like a bracelet to help you to remember to pray for our baby, we would LOVE to send one (or two, or five, or twenty, etc. etc.) your way. Just email me at It amazes us that people all over the world are sharing in this crazy journey with us. Your love and support are overwhelming--in the best sense of the word!

Wednesday, April 28, 2010

The Meeting

Well, let's just say that the meeting didn't go quite as expected. There is just not a lot we can do right now. Most of the meeting was spent in conversation with some nurses at Duke going over a consent form for Malachi's blood to be sent and have some investigational lab testing completed. There is no question whether or not to go forward with that because he already has the PICC line, there's not a TON of blood that is required for the study, and there is no additional expense to us. We will possibly pursue conversation regarding a thymus transplant at Duke a month from now.

Tomorrow, they will begin a medication to temporarily suppress Malachi's current lymphocytes. This seems counterintuitive, but the lymphocytes are not regulated because of Chi's missing thymus. There is a good chance that the lymphocytes that are in his body, are still mine from when he was first born and they are now attacking his skin (just as if he were to have an organ transplant and his body rejected the new organ).

So did we get any answers today? No. We are pretty much in limbo for the next month or so to kind of see how Malachi does during that time.

table manners

"Mommy, don't talk while I'm eating."


Conference today with Malachi's Immunologist. Safe to say that the results from his initial bloodwork a couple weeks ago is not very promising. Please pray for peace as John and I speak with Dr. N. this afternoon at 3:30.

Monday, April 26, 2010


After PICC line placement...
He was definitely warm enough to NOT need a blanket, but I couldn't stand to look at his poor legs. When they did an ultrasound on his leg, the doctor thought he would be able to get a good vein in his right leg. After many pokes and then having it clot off halfway up to his heart, they had to start over on the other leg. So when he came out of the operating room, he had a PIV (peripheral IV) on his right leg and then a PICC line in his left leg. It took them over an hour to place the line.

Infectious disease has a whole list of labs that they want drawn to see if anything comes back positive to explain what is going on in little man's body. His white count is crazy high, he still has a rash, and his lymph nodes still look like this...
(i didn't even pose him this way... he was just showing off his stuff *wink*)

Why Daddy Works

"somebody need to pay the bills"

back to square one

I feel like with Malachi we are always starting over. Last night before I left the hospital, I made sure to point out to one of the NPs that his lymph nodes seemed larger to me, his rash didn't seem any better, and that he was getting a really bad rash on his bum. I wanted the staff to be aware that these were still valid concerns and that John and I wanted some answers as to what is going on with our baby boy.

That being said, this afternoon I received a call from IR (interventional radiology) asking for consent to place another PICC line. For those wondering, PICC lines are for "long-term" access. This will be Malachi's THIRD line in the past two weeks. It just breaks my heart. Because of his BT shunt, he cannot have access in his left arm. His veins are not good enough for a PICC line in his other arm now that he's already had two, those arteries are clotted off and no longer PICC-worthy.

So, today, Malachi's white count is still very very high--37,000. Normal high is like 12,000. He doesn't have a fever, which is good, but still no one knows what's going on. Infectious disease has been contacted and they are running some labs to check for fungal type issues going on that didn't show up in his blood cultures from last week and their desire is to go ahead with the lymph node biopsy as they are now getting larger. Also, his rash seems no better than when he was readmitted two weeks ago.

Praying for answers. We want our baby home, but we want to know that he's healthy enough to be at home. Will probably update either late tonight when I get home or early tomorrow after I've had a chance to sleep. Poor little man.

Sunday, April 25, 2010


Malachi's PICC line had to be pulled today. Over the past day or so during dressing changes the nurses had noticed some white discoloration around the PICC site. Then instead of just white, it was white and kind of fuzzy. I was there today when they took off the dressing to take a look at it and decide what they were going to do with it. Nasty! Some semi-solid green pus grossness came off with the dressing. The surrounding skin was red and tender. The decision was made to remove the PICC and to stop further risk of infection. With Malachi's immune system, it's just a chance we can't take.

His blood cultures were negative for any growth, so the general antibiotics he was on have been stopped. So right now he doesn't NEED an IV, but we're praying that he remains stable enough so the he doesn't need any sort of IV access the rest of this hospitalization. We are also praying that the crazy bad diaper rash he has right now doesn't turn in to some sort of a yeast infection (which has happened in the past). Yeast is something very hard for Malachi's system to fight.

His skin is still super dry and the rash still covers his body and now his face is really flaky. Also, I think some of his lymph nodes have gotten bigger. The "plan" is for him to come home tuesday or wednesday, but I'm not feeling super optimistic about that.

Friday, April 23, 2010

not hiding it

Well, not sure how much longer we would have been able to keep things a secret even if we tried...

9 weeks:
Really? Already!?!?

yesterday in pics

All sprawled out snoozing in his hospital gown... He was very, very, very tired and completely spent. There was a battle raging within his little body...

Obviously not sating well... He was in the 60s all day with some dips down to the 50s and 40s. Scary.

These marks are a few days old. Last wednesday was the first time a blood pressure cuff ever left marks like this on Chi's extremities. He had dark purple streaks covering his right arm and legs.

Some bruising or something that showed up after they placed his PICC line...

Getting a blood transfusion. Here you can also see that he is still puffy and you can kind of see the swollen lymph node under his armpit.

A perfect, 6-month old developmental milestone--purposefully sucking his thumb. He's always been a finger chomper, but this is super purposeful.

On another note, the IV antibiotics that were started, the extra diuretic, and the blood transfusion all seemed to greatly impact Malachi's state for the better. They did stop a medication he was on for urinary reflux (bactrim) as well as a medication he was taking prophylactically for his immune system (septra). His rash seems to be doing a little better, but his skin is still really dry and his face his almost flaky. Not really sure what else will be on his agenda this hospitalization, but we are both excited and scared to bring baby home again! He can just go downhill so quickly that we have to maintain a healthy fear in regard to Malachi's care.

John just got off the phone with Chi's night nurse. He is sating 84% on 35% O2 support and they increased his rate on the ventilator to 15. We never know what the day will bring, but overall today was a good day. Also, John had some wonderful time at the hospital with Malachi. He said it was nice to see him actually coherent and "playing." John even got a few smiles. I think he needed that good quality time as much as Malachi did ;)

Thursday, April 22, 2010

working on it

Well, Malachi is holding true to his character and continually boggling the minds of those charged with his physical earthly care. I am very thankful for the doctor who is overseeing Critical Care at the hospital right now. He is very aware of Malachi and all the issues (especially from a cardiac standpoint) that affect him. I need to get back into his room but the plan for today is a PICC line, an echocardiogram, more labs and a possible blood transfusion to get more oxygen directly in his blood stream. The main issues we are struggling with right now are his low oxygen saturation levels, the fact that his blood pressure reading is consistent on three of his limbs but completely different on his right leg (no physiological reason to explain this), and his extremely low urine output. The doctor is just confused as to how all of these relate to one another. Hopefully the labs will rule out some things and he will be able to move forward in a logical direction. Thanks again for all your support and prayers!

Wednesday, April 21, 2010

1st OB visit

So not only did God knock some sense into me yesterday, but He also gave me the pleasure to see a completely normal-looking 9-week old baby whose heart is beating strong deep within me. AMAZING! Based on my LMP my due date is 11/27/10. The ultrasound measured the babe a bit bigger and gave a date of 11/23/10, but not significantly different enough to change the original 11/27 date. Can you believe it?!? God will be quickly adding to our family when Malachi is 13 months old. I'm still shocked and I'm still in awe.

It was a new doctor who made a great first impression. With my history, she will have my future ultrasounds done off-site to get a better high-resolution picture to tell if there are any structural abnormalities to be better prepared at the time of delivery if need be. The doctor's biggest concern is with everything going on that I can keep my anxiety to a minimum ;). I was curious what my blood pressure would be at this visit, and it was normal for me--maybe a bit high--115/60, but definitely not bad!

I'm starting this pregnancy about 5, okay maybe 10 pounds heavier than I did with my last. I wish I could chalk this belly bulge up to baby, but I'm thinking 9 weeks isn't too visible from the outside. So it looks like after this baby arrives I'm going to need to be a bit more diligent about getting back into decent shape.

Praying this pregnancy isn't as eventful as my prior two (miscarriage at 12 weeks and Malachi)!

a sense of "normalcy"

I hesitated as I wrote the title for this post because, really, nothing in my life feels "normal" right now. We will get there though. I am sure of it.

God's Word states...
You keep him in perfect peace whose mind is stayed on You, because he trusts in You. (Isaiah 26:3)

This verse has been on my mind and heart a lot lately. Unfortunately, for the last few days it had NOT been an encouraging verse. Instead, it has been very, very, very convicting. God finally used our little miss Emma to really bring it home. The last few days she has just been much more rebellious and much more disobedient. Throwing fits and tantrums (thankfully we weren't out and about). Just not her norm. It occurred to me the night before last that God was using Emma as a visual display of my rebellion and disobedience to Him. Even though I wasn't outwardly throwing a fit, inside I was harboring bitterness and resentment and outright distrust. There were many nights of crying myself to sleep. There was no prayer. There was no Bible study. There was no fellowship with God. My mind was NOT stayed on Him; therefore, I was not kept in perfect peace. You would think after five months of Malachi, I would be learning very up close and personally how vital and appropriate it is to simply trust God with my life. Just trust.

Feel free to leave a comment with a verse that you find as an encouragement in times of trials, suffering, and moments of disbelief. I will add them to my index card collection and use it as a tool to keep my mind stayed upon Him--my Sustainer.

Jesus states (in Matthew 6:25-34)...
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life? [Marissa, are you listening?]
"And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith [er, Marissa]? So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' For the pagans run after all these things, and your heavenly Father knows that you need them [Amen!]. But seek first His kingdom and His righteousness, and all these things will be given to you as well.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

So, I seek after Him. I pray for the strength to endure the path He has set before me knowing it won't be easy. It will be very, very hard. I can only do it if my mind is stayed on Him. All that His Word calls me to be I can only accomplish in and through Him. So I will seek. I will study. I will pray. I will trust. He has promised to give me the grace I need for each moment because He saved me and wants to use scared, weak, faltering me to bring glory to His name. Amazing.

(oh, and nothing is really "normal" right now. chi is still in the hospital and we are separated as a family, but i have peace and for a Christian, peace should be the norm. that's as close as i get right now)

Bracelet orders

I will be making a trip to the post office later this week so feel free to get in your order for a malachi bracelet! Just e-mail me with an address and quantity! We have PLENTY so don't be shy!

the boy is boggling

So a quick recap of the past week or so...

Wednesday 4/14: Scheduled clinic visit at Riley to see the immunologist. Dr. N says that because of Chi's full-body red raised rash and swollen lymph nodes, he needs to be admitted. We wait for hours for a bed in the PICU to open up. Finally admitted, but nothing can really be done yet.

Thursday 4/15: PICC line placed. Full body CT scan revealed swollen lymph nodes throughout entire body.

Friday 4/16: Skin biopsy. (Lymph node biopsy canceled because the risk of infection was too great.)

Weekend 4/17-4/18: Doing better and transferred out of the PICU to Infant ICU. Still requiring more oxygen than usual, but okay.

Monday 4/19: Through the night, his oxygen support had even gotten down to room air (21%) Cleared for discharge by Dr. N. as his nodes and rash didn't appear worse. Cleared for discharge by developmental peds. Cleared for discharge by pulmonology. A ton of labs were drawn and sent off site (Cincinnati Childrens and Correlagen Lab in Cambridge, MA) from him and me. By the time I arrived at the hospital to get him ready to come home (John was going to meet us later), he was puffy to me. His poor little fingers looked like little sausages and his eyelids were so swollen that he could barely open his eyes (even his good eye!). Before we left, I wanted a doctor to take a quick peek at him. As much as I wanted my baby home, I didn't think I could handle a sick Malachi. Sure enough, when they went back and looked at his ins and outs over the last few days, he was positive by like 400. The doctor wanted to give him and extra dose of IV Lasix and a chest x-ray and see how he did through the night. Discharge would have to wait. Oh, and because we were set and cleared for home, they had pulled his PICC line out just an hour before the doctor saw him.

Tuesday 4/20: I called first thing in the morning to see what the plan was and when I could pick Malachi up. Through the night Malachi had required elevated oxygen support to the point where they thought his trach might have been occluded. They did an emergency trach change, but no improvement in his oxygen saturations. Discharge would yet again have to wait. He still looked swollen, but the extra dose of lasix had helped to spur on some good diapers and he gradually seemed to be getting better throughout the day. We'd be going home tomorrow!

Wednesday 4/21: We were set for home. I had arranged a sitter for Emma and a friend came to the hospital with me to help bring home Malachi so John didn't have to take off time from work. When we got there, Malachi was on 40% (the maximum oxygen support he can go home on), but he was only sating in the 60s. Really?? At that point, it didn't seem to matter if he was on 40, 50, or 60% O2 support, his sats rarely came above 70%. The nurse decided it was time to get someone--and NP, a doctor, someone. As soon as she walked out of the room Dr. B (a familiar doc from the PICU) was walking in to say goodbye. Then he looked at the monitor. They immediately wanted to draw some blood for a CBC to check his hemoglobin level. If that was low, they were going to attempt an IV and a blood transfusion just to get more oxygen directly into his blood stream since changing vent settings wasn't helping. Also, even though he looked a little better, he was still very positive on his fluids. Again, another additional dose of lasix and a chest x-ray. The blood test revealed that his hemoglobin and hematocrit were fine, but his white count was 32,000 (normal high is like 12,000). With that and Malachi's already suppressed immune system, blood and urine cultures were ordered and he will remain inpatient for at least the next 48 hours.

on a good note: i didn't think i had my camera with me (i even checked my purse and didn't see it) so i didn't get a pic, BUT chi was completely sucking his thumb with his forefinger hooked on his little nose... AMAZINGLY PERFECT! there will be a picture to follow... promise... sooner or later.

Monday, April 19, 2010


Well, looks like home is set for tomorrow. When I got to the hospital today, I thought he looked really puffy and swollen. He was also requiring 50% oxygen support, which is high for him. He was cleared by his immunologist from a lymph node standpoint, cleared by his pulmonologist from a lung standpoing, and cleared by the attending developmental pediatrician BUT mommy felt like something was off. The intensivist (ICU attending doctor) was doing rounds and I wanted him to take a peek. The nurse practitioner went back and looked at his chart and saw that Malachi is actually positive from a fluid standpoint by like 400 ml. That's quite a bit. So they did a chest x-ray to be certain that the fluid wasn't collecting around his lungs and it actually seemed better from the last x-ray that had been taken a few weeks ago. So that's encouraging. Hopefully with an extra dose of lasix and possible another diuretic as well, Malachi will pee some of that fluid out and be set for home tomorrow morning!


Well, I just got off the phone with Chi's immunologist. He believes that the rash has not worsened and the swollen nodes have not worsened. He has cleared Chi to go home. So we will go home and wait for results. We should receive some of the blood work back in just a couple days. I believe this includes the testing regarding whether or not the lymphocytes in Malachi's body are really his, or if they are mine (I'm dreading the blood sample that will be required of me when I get to the hospital this morning--I know, I know. I'm a wuss). From what I gathered, depending on these results (if the lymphocytes in Chi's body are not his own) then he will most likely be started on an immunosuppressant. This seems like the complete opposite of what you would want to do in Malachi's situation, but alas, it must be done because if that is the case my lymphocytes in his body isn't working. We still obviously don't really know how any of this is going to play out. The SCID testing should come back in two or three weeks. So we wait.

The doctor continually reassures us that we are doing a great job with Malachi at home. Affirmation I so desperately need. One thing he said that stood out to me when I was speaking with him this morning was, "I don't know how you guys are handling all of this so well, but I would be very interested in hearing more about it." Pray that we get the opportunity to share with him that what little strength we are still clinging to comes only from the Lord. And only by His grace am I able to not be a complete mess when I speak with any of the staff at Riley.

Saturday, April 17, 2010

Wanting to be Irrational

I don't think my husband understands my need to just be irrational at times. I want to sob uncontrollably and fret and worry and point fingers and find blame in everyone but myself. I want God to make Malachi whole. I want him to be all better. I can't control this and I want to SO BADLY. I want to be mad at God for making Malachi this way, but I'm not. I'm just frustrated with our current situation. I'm not very good with unknowns. I don't know what these blood tests are going to come back as. I don't know how long I will have my baby. I don't know if I can keep him "germ-free" enough so that he doesn't get sick and have to be readmitted to the hospital. I don't know what I would do if they thought it was best to just keep him in the hospital until they have all this stuff figured out. I'm tired. I'm scared. I'm frustrated. I want to be in control, but that's not my place. I want to be irrational. Thankfully, the Holy Spirit within me (and my husband) continually remind me that God is in control. God is good. Everything that happens WILL bring glory to His name.

Friday, April 16, 2010

still at Riley

The CT scan showed swollen lymph nodes throughout Malachi's entire body. On a good note, the did not appear to resemble anything like leukemia or those types of things, so that's encouraging. The doctor is pretty certain that Malachi appears to have an atypical DiGeorge presentation. He was tested for the DiGeorge Syndrome back when he was only weeks old. The lab, however, was unable to get Malachi's cells to divide appropriately in the diagnostic tests and after three tries, they stopped sending it. The main DiGeorge characteristics are those of hypocalcemia (low calcium levels) and absent/partial thymus (meaning a low immune system)--both of which greatly affect Malachi.

They decided not to do a lymph node biopsy because of how they appeared on the CT. They did still do a skin biopsy to try and get a better idea of what is causing the rash going on all over his body. The results won't definitely tell us what is going on, but they might help point to a conclusion.

So for now they are keeping him through the weekend for observation and then on Monday they will draw the labs that they need to send out for the SCID diagnostic studies. Then we wait. If he is stable, hopefully he will come home. We just don't know much at this point. If the SCID testing reveals that he has very minimal to no thymic function (the thymus produces T-cells which are the main source behind our body's immune system), there is a chance that he will be transferred to Duke University Medical Center for a thymus transplant. Obviously that would be our last chance type of effort and it definitely comes with its own set of risks. With a little research online, as of 2007 DUMC was the only center in the world that did this type of procedure.

It would obviously be ideal if we don't have to go this route with Malachi, but right now we just don't know.

Thursday, April 15, 2010


can i tell you how much i hate, hate, HATE being at the hospital. nope. i really don't think i could put it into words. two weeks is long enough to get used to something. i got used to having my baby home. the headache that has been holding on strong all day hasn't exactly helped my mood and perspective of all this either. when we took Chi down to get his PICC line. i signed consent--that awful paper that signs away my little boy to the mercy of nurses and physicians until I see him again minutes or hours later. this afternoon i signed, sat down in the waiting room, laid on the couch, and cried. not a good day. i am tired. i am weak. i am faltering.

today's events

PICC line placed.... check
full body CT scan.....check
tired, emotional, frustrated mama... check
fussy, upset, scared, uncomfortable baby ALL DAY... check

rough day. no answers. something is wrong with malachi. requiring more oxygen. praying for wisdom. tomorrow brings removal of one of his lymph nodes and its biopsy as well as a ton of blood to be drawn.

Wednesday, April 14, 2010

and we're back

well... we had a good run at home. BUT we're back. (hopefully for just 3 or 4 days)

We went in to our first outpatient visit at Riley with the Hem/Onc department. We were set to meet Chi's immunologist and go over findings regarding his suppressed iItalicmmune system. Last night, we noticed some swelling in his lymph node under his left armpit. Then this morning, there was swelling also pretty evident below his right armpit as well. At least we were going to the right specialist to ask about these new conditions.

When the nurse was taking his vitals after we were called back to be seen, we noticed the blood pressure cuff left some nasty marks on his arm. Just the little bit of pressure from the cuff broke some of his blood vessels below the skin. He has had hundreds of blood pressures taken and nothing like that had ever happened. Something is wrong.

After the doctor came into the room and saw his full-body rash, red-appearing face, swollen lymph nodes, and the marks left by the blood pressure cuff, he left the room to make some phone calls to admit Malachi to the hospital. We also learned that the genetic testing that was sent a few months ago came back. Malachi does not have the mutation on the one gene that they singled out for CHARGE. Regardless of the result, he will still have the clinical diagnosis of CHARGE due to all of his conditions. The doctor is very concerned about Malachi's immune system and is searching for answers. Unfortunately, now we're kind of back at square one. After this hospitalization, we will continuously be followed by this specialist at least every six weeks.

He's got quite the agenda the next couple days including the following:
1. He is to have a central line placed (a surgical procedure) because of all the labs that will need to be drawn and just overall access into his body because he is a very hard stick and his peripheral IVs do not last long.
2. He is to have 15 ml of blood drawn for further tests. The main thing the doctor wants to rule out is SCID (severe combined immunodeficiency). Things are kind of pointing toward SCID because of Chi's low T-cell count and apparent thymic dysfunction. Pray that this is not the case. We will follow down that road if we have to, but looking and thinking further than I know will not be healthy for me. The results from this testing won't be back for at least a month.
3. He will have a CT scan to check for any further lymphedema tomorrow morning.
4. They will also do a skin graft to get a better look at the rash (which seemed to be overlooked or brushed to the side when we were still originally inpatient). It could just be a bad case of eczema, but they want to rule out a maternal-fetal graft vs. host reaction. There is a chance that his body is trying to fight off any remaining T-cells that he still has in his system from me.

Right now, more questions have been raised than we have answers to. For his own safety at the hospital, Chi is in protective isolation. It will be interesting to see how much more protective we will need to be with him at home. For now, we wait.

Tuesday, April 13, 2010

This article was posted on a fellow CHARGE mom's blog regarding her amazingly beautiful daughter Moriah and her medical journey for the last two years. What a great reminder to this extremely worn out momma of the "WHY" behind Malachi's "accessories"! In time, I know I will eventually find them as a blessing instead of just a daunting task day in and day out. This is where we are, for now...

Being a Kid:

When I was pregnant, I was nervous about a lot of things. One of my recurring worries was whether or not my little guy would slip through my hands during bath time. I think those kinds of worries and fears are pretty normal for new moms. When Connor was born with a lot of challenges, I found my little worry was just that--a very little worry-- and most certainly not something I couldn't manage. I was about to embark on the journey of my life, and the ups and downs of Connor's life would teach me some incredible things.

I could write volumes about all Connor's life has taught me, but right now I'd like to focus on how very typical a child's life can be, no matter what challenges he may face. It really is a matter of perspective.

More the Same Than Different

After a difficult pregnancy, a challenging eight weeks in the NICU, a crash and a code, Connor was given his emergency bedside tracheotomy, along with CPR, and emergency medications to literally give him another chance at life. He spent the next three weeks completely paralyzed and sedated as his body healed. Connor had sustained brain damage; he was trached, oxygen and ventilator dependent. He struggled with seizures, severe GI problems, and many other serious health issues. We were told our son would be very low functioning, that he would never walk, never talk, that it would be best for him and for us to institutionalize him.

My husband and I had very different plans. We wanted to take our son home, share our lives and our love with him, provide him the best possible care, and be a family. One of the Physical Therapists at the hospital spoke with us during this difficult time. He offered us hope, and his words still resonate with both of us. He said, "Remember, Connor is more like other kids than he is different. Just treat him like a kid." That is exactly what we did. It took time to get Connor home but we did it. We gave him everything we could, and he began to thrive in amazing ways!

Thriving with Medical Equipment

I think the key to living a full life with a child who has a trach, a ventilator, oxygen and other medical equipment is to remember that these items are there to help our kids develop, thrive, and enjoy a fuller, more meaningful life. They are not meant to hold our children back. It's easy to feel nervous around medical equipment, but instead of allowing it to intimidate us, we can master it, and use it help our children progress beyond what they ever could have on their own.

These are some things we did right from the beginning that really helped:
  • Learning trach care by practicing on a trach doll until doing Connor's care was easy.
  • Taking the time to learn the ins and outs of all Connor's equipment, including his ventilator, so WE became the "experts" on our son's care.
  • Training several family members and friends to care for Connor's medical needs, so they felt comfortable around him, and we got much-needed breaks.
  • Keeping an emergency bag packed and re-stocked after going out, with all his trach and other supplies.
  • Keeping a journal of questions/concerns and issues to discuss with Connor's doctors during our weekly "check-in" phone conversation.
  • Working hard to build positive relationships with medical personnel, therapists, educators and other resourceful individuals to provide Connor with the best possible collaborative services.
  • Utilizing on-line support groups to develop and maintain relationships with other parents who had children with similar issues.
  • Regularly updating an Emergency Information Form and having several copies available:

Just Being a Kid

Most importantly, we relaxed around our son and treated him just like any other kid as much as possible. He had to clean up his toys before snack time. He went to gymnastics with his friends, and we climbed through tunnels, oxygen, ventilator and all. We expected a lot from our son, and he responded with more than we ever could have dreamed possible! He was very, very much like all of his friends, and enjoyed play dates, trips to Grandmas, times at the park, and so many other activities just like other kids.

Connor surprised everyone, most especially the doctors who had underestimated him. He learned to walk and to talk, to ride a bike, and so many other things. He charmed everyone he met with his amazingly sweet, spunky grin! He never could have done any of this without his trach, ventilator, oxygen and many other things that gave him his ability to breath, to have energy and to thrive.

Although it was not always easy, we know these "accessories" were what truly gave our son what he needed to enjoy a full and wonderful life, and we are incredibly thankful!

We've obviously still got a LONG ways to go and will have a lot on our plate for a VERY long time, but I'm still trying to remind myself that there are so many more good things right now than the bad. A possible post to come on that later.

Sunday, April 11, 2010

a common occurence

When I [mommy] am sitting on the floor with Baby Chi, Emma will come put her arm around my shoulder and say, "Yeah. He likes us."

Craving Routine

Right now, the only routine in my life is that of Malachi's medication and feeding schedule. It's wearing me down. Our nursing schedule is inconsistent to say the least. Therefore, so is my sleep. It seems like the general outside opinion for what would be best for us regarding day or night nursing help is that we would benefit most from day help since we have Emerson at home during the day too to take care of. Frankly, I personally think I benefit most from a good night's rest in the same bed as my husband. A few hours here or there on the couch or recliner between starting and stopping his feeding pump and suctioning just isn't cutting it.

I'm learning I can handle Malachi and Emerson together during the day by myself while John is at work. Don't get me wrong, I won't turn down a little help during the day every now and then. But, right now, Emma and Chi both take afternoon naps. There is peace. There is quiet. At least for almost two hours of my day. Bliss.

Also, it's just weird being here during the day with a nurse. Especially if it's a male nurse. Weird.

All that to say, pray that we get consistent night nursing help. Fast.

Friday, April 9, 2010

pics and video

Home is way better than the hospital. Way better.

I don't have to freak out on Emma for wanting to roll around on the floor to play with her brother. Let's face it, hospitals are NOT clean. Okay, so my house isn't exactly pristine, but it's better. Way better.

Emma and Malachi...
While I was giving Malachi a bath, Emma was given permission to pick out his outfit. I think she did a great job.

flirting with mommy...

The boy does NOT like a dirty diaper. This is him ACTUALLY CRYING to get my attention to change him. Amazing!

It was clearly a dirty diaper issue because this was filmed as soon as I was finished...

Thursday, April 8, 2010


So since Emma's trip to Georgia, it's been hard to get her to go poop in the potty. So, we bribe. (Okay, so her reward has always been a piece of candy in return for number two in the potty._ Well, now instead of just using candy as a reward, the lack of candy has also become a consequence for going in her diaper. When we see poo in the dipe, no more candy for Emma 'til she goes in the toilet again.

Today, she went in her diaper.
Daddy came home.

Emma (already knowing the answer): "Daddy, where's my bag.. with the eggs?"
John: I don't know.
Emma: It's in the kitchen.

John: Sorry Emma. Mommy said that you went poopy in your dipe today. No candy.
Emma: (walking away defeated)

Next thing I know, Emma comes running out of our room into the living room with me chewing on something.
Mommy: Emma, what are you chewing?
Emma: (whispering) Don't tell mommy. Daddy say that.

Wednesday, April 7, 2010

Some Quick Pics

So, I guess one of the nice things about being homebound with a toddler who doesn't really know what's going on outside the walls of our apartment is that she doesn't know when it's a couple days past the holiday. We spent Easter weekend talking about Christ's death and resurrection in terms we pray her 2-year-old mind can comprehend. She's truly an amazing gift to our family. Anywho, we were then able to tonight have our own little egg hunt at our home (not to mention everything is 50% off!). Here's some pics, in reverse order of her adventure...


Don't you wish your hair looked like this after a little detangle spray and a ponytail? Sheesh! Super cute though!

Still home!

We've made it 8 days at home! And no unplanned return trips to the hospital. We've been crazy tired and busy, but happy to have him home. I just wish we were physically able to take care of Malachi on our own. But, he's a complex character and just needs a lot of monitoring and attention to alarms and suctioning.

We are still struggling with finding the right "fit" for us and home nurses. We did not have any night nursing last night, so I slept for about four hours and then John woke me up at 1:00 am and it was my turn for the rest of the night. I was able to get a few interrupted hours of sleep in our lovely recliner, so you can only imagine how good the quality was.

Today was wednesday. In the world of Malachi, that means trach change day. John and I make a pretty good team. Even if one of us gets frustrated with something, the other usually knows to just be quiet and not make things worse. I find it funny that after a successful trach change, I have the urge to give John an chest bump in celebration for a job well done!

That's all I can muster for an update now. I'm sleepy.

Sunday, April 4, 2010

better day than night

Malachi had a rough night. I think he shook the nurse up pretty good last night. She was certain that we would be in the hospital today. Well, some sleep and a little lovin' from mommy and daddy took care of that. I agree, his sats were lower than they had been the past few days, his oxygen support was higher than it had been, and his secretions were a bit thicker. He was much puke-ier and just required some extra cleaning. Nothing completely over the top, but just more than usual. And I think the agency had her working WAY too many hours this week, so by this morning she was spent. He puked a couple more times for us this morning, but spent the majority of his day sleeping. We even got some smiles out of him later in the day, especially for daddy! Although, he did have one pretty significant desat where he just clamped down and stopped breathing. He was fighting against the pressure of the ventilator. But, he recovered and we had a mostly uneventful rest of the day.

On another note, we've eaten well ALL WEEK! Thank you, thank you!

Saturday, April 3, 2010

We need to get into showbusiness

When Emma sees a pizza commercial... or we put a frozen pizza in our cart... or John makes dinner... we hear the following:

We're under attack...

Thanks for coming over this morning, Kelly. And even more so for the sheet of stickers you brought for Miss Emma!

All Smiles.

Sorry, no pictures to prove the smiles today, but it was GREAT! I even got a two-sided grin, which considering his right side facial paralysis he must have been VERY happy to see me! He was kinda pukey today, but nothing too terrible. (The above picture is kind of our living room set up for getting Chi out and about on the floor in our line of vision). He still love, love, LOVES his sister and is always trying to find her with his "good eye." It truly amazes me. John and I are feeling MUCH more comfortable with all of his care and that sort of thing. Night nursing has definitely been a blessing that allows us to get a full night's rest at night, but we may have to go without for a few days as we may be looking for a different nurse. One of our biggest stipulations was that our home nurse didn't smoke. Well... she smokes. So we will be speaking with the nursing agency after the holiday weekend. So pray for us as we handle all of his care all day and night for a while. It will not be easy. AND, I'm limiting my coffee intake due to the growing baby in my belly (which Emma is convinced is a girl), making things all the more rough. Well, that's all. Isn't he so cute?

Friday, April 2, 2010

It's True

Yep. It's true. Can you believe it? We were certainly taken aback! Mr. Malachi is officially a big brother and will meet the next in the Sharbaugh clan about a month after he turns 1. I see minimal-to-no sleep in my future for the next few years. God is certainly amazing! He blessed us with this pregnancy and baby when we had decided it would be best to avoid it. Thankfully, we're not the ones in control. Not only does God know what's best for our family, but He also knows what's best for our man Malachi and big sister Emerson. It will truly be amazing to see how this all plays out. It will definitely help me to not baby Malachi for forever and it will most likely spur him on with developmental milestones and all that. We are still taking things one day at a time because, frankly, if I think too far ahead, those pesky hives show up and drive me crazy!

Has not the LORD made them one?
In flesh and spirit they are His.
And why one?
Because He was seeking godly offspring.
(Malachi 2:15)

Children are a gift from the Lord;
they are a reward from him.
(Psalm 127:3)


John: Emma, hold your horses!
Emma: But I don't have any horsies.

Good and Tiring

Malachi has done great at home! Besides the fact that I feel we're still missing some medical supplies we should have received, all is well. We had our first "outing" the other day--a trip to a closer hospital for an EKG test. We were supposed to have it done yesterday or today (because of an increase in his heart medication the day of discharge). Well, yesterday afternoon his heart rate started bouncing around all over the place--anywhere from 130 to 190. Naturally, this started his alarms going crazy. Praise God for a silence button (at least on one of them!). We figured, well if he's having a funny rhythm, it'd be nice to get it captured on an EKG and have the cardiologist review it. At the time of his EKG, his rate was 170. I got a call from one of the cardiologists (i think maybe an electrophysiologist) this morning asking if we could go back and get an EKG when he's running a more "normal" rate. At least getting him to and from the hospital is convenient *WINK*... or not. But, we are getting better with the practice as far as how to go about loading him into his stroller, into the car, back into the stroller, into the hospital, into the car, into the stroller, back to home. I know you have to learn how to do it with a normal baby, there are just a few more "steps" for us in the transport process. Hopefully, when his immune system is a bit better, we will be able to go more places and do normal things as a family--well, once we get that bigger vehicle. Other than a bit of a funny heart rate yesterday afternoon, Malachi has been doing GREAT! It's just way better to have him home. It's nice to be able to just lay by him on the floor (not exactly a good idea at the hospital, nasty) or just having him in the same room. All in all, a great week. I'm NOT looking forward to John going back to work though. He's been AMAZING all week! Hoping for an uneventful couple of weeks and then the crazyness of follow up appointments and 6-week visits will be in full swing... joy.