Asher Update.....sorry it took me so long!

Asher found his feeding tube...

I can't believe it has just been 2 weeks since I posted last!!! Life is just moving too fast now a days. Quick update on Asher. We have been following up with his kidney doctor to find out what exactly is causing the swelling in his kidney's and haven't really gotten any real answers. We had our first visit with the urologist on Tuesday and he gave a good description of what he saw going on and some solutions. We are waiting to get a long test done next Tuesday to get a definitive answer as to the cause of the swelling and from there we will find out if he is going to surgery to fix it or not. From what it looks like, the ureter, which connects the kidney to the bladder, is restricted some how and that is causing back pressure which is dilating the ureter and could eventually damage the kidney. We have some solutions that are being tossed around....one of which being to temporarily detach the ureter from his bladder and route it outside his body for a time. This will eliminate the resistance and allow the dilation to go down, hopefully returning the ureter to it's normal size. After that happens, Asher would undergo surgery to reconnect the ureter to the bladder. We will know more after the test. Pray for healing in Asher's kidney's and ureters!!!

We are also having a bit of difficulty with feeding Asher. Since my breastmilk production is only about half of what it needs to be, I was supplimenting with stored breastmilk from my deep freezer, which has since rut out. I am looking to begin making formula for Asher as I personally know of two children who have used this and they are perfectly strong and healthy boys. The recipe calls for a number of suppliments which need to be ordered and that takes time. So, in the mean time I had to suppliment with something and purchased some organic formula. Well, his little body did not like the powdered forumula at all and he began throwing up.....or trying to throw up since his nissen doesn't allow him to do so. We freaked out, not knowing what was wrong with him, and took him to the ER where he then proceeded to act like normal and made us feel really silly for taking up an observation room. I'm not usually that jumpy but with Asher's condition, you can't be too safe. So, from my perspective, anything that makes my child try to throw up that violently isn't good for him to be eating. So, we put the word out to all of our friends with new babies asking for any spare milk they had....and we have received a nice little bit...probably enough for a week or so of supplimentation. HUGE BLESSING!!!! While we have that to help feed him, I'm trying to see if he is sensitive to goat's milk and if he isn't, then I'm going to order the ingredients needed to make the formula and see if he can take that. I know I can't always count on wonderful mommy's to donate their milk and I need to find another solution pretty soon. My primary hope is that he would be able to nurse soon and could bring my milk back up that way. I have a suspicion though that my milk supply is dwindling because my body is just plain worn out. I'm over tired, over stressed and don't eat well as of late due to the before mentioned things. Put all that together and I don't see much milk being made.

Now, there are some bright points in this seemingly cloudy day. I just called the neurologist today to ask about Asher's EEG results of 3 weeks ago (hated having to wait that long for an answer) and it came back clear of seizure activity. So, we are beginning to ween him off of the phenobarbitol. It will take us 5-6 weeks to ween him off and then another 2 weeks for it to be completely out of his system so that's another 2 months and then hopefully he will be free. The urologist wants me to take him off of the amoxacillin (antibiotic), THANK GOD!!! I have been pushing for the to take him off of that stuff for over 2 months now. Apparently the urologist is the only doctor who sees the cause and effect relationship between using routine antibiotics and encountering super infections from antibiotic resistant bacteria. He said that if Asher is to get an infection, he would rather it is from a bacteria that they can treat with antibiotics. So, with that med gone he is just on the Phenobarbitol (which is being weened) and the Calcitriol, a Vit D suppliment used to regulate his calcium. Thank God he is coming off the meds!!!!

We are still seeing an occupational therapist for his pinky finger. It is starting to straighten out a little bit more which is good. I need to remember to put his splint on more than I do. He is also seeing a speech therapist who is working with his oral motor skills to help him eat better. Right now he is taking 1 ounce by mouth 1-3 times a day, depending on my hectic schedule (can you believe I had to take him to 5 different appointments last week alone!!!) He loves his bottles and I can't wait for him to get his full feeds that way.

Well...it is so late and I need to get some sleep. Sorry again for the delay in updates but I was overwhelmed with life's happenings and didn't want to write about them ;)

Blessings!
~Erika~

Aside from all of that, he is doing very well. Growing and rolling over. ...playing with toys and vocalizing. He is finally growing some hair, it's just blond and doesnt show up too well ;)

FINALLY .....THE NEWS WE HAVE BEEN WAITING FOR!!!

Today was a busy day... waking up early to shower and get a few minutes in the word before waking the family, then dropping Joel at "Momma Glenna's", Matt at OHOP and then off to Asher's appointments. All before 9 am this morning. First we saw his speech therapist who encouraged me to resume the small trial oral feeds with Asher....she didn't hear any aspiration this morning, but it is difficult to tell because he makes a lot of airway noises. After that we had a brief consult with his Occupational Therapist who evaluated the finger splint she made last week and smoothed some edges per my request. I showed her the modifications I made with the bands and she said they were fine. Here is a pic of the splint:

I used some bandaid sticky wrap to keep the splint in place, instead of the bulky velcro wrap they had which fell off and scratched skin.

The splint is really just a piece of plastic material that has been heated and molded to his hand in the right shape. He doesn't like it much, because he likes to stroke his nose while sucking on his other hand and this impairs him.

After therapy, we walked over to the Congenital Heart Institute for our check up and eco-cardiogram. This test was the most important one he has had so far, in my point of view. This one test could be used to see whether he would need another open heart surgery or not. the veridct.....HIS HEART IS WORKING BEAUTIFULLY and his AORTA IS GROWING WITH HIM!!!! Praise You Jesus!! We have been praying for just this news! Dr. Dave was thinking that Asher would probably need another trip to the Cath-Lab to see how his heart was functioning (invasive procedure, but not heart surgery)...and even that wasn't needed. He wants us to come back in 4 months for a check up, but he said that if his progress continues like it is then he doesn't forsee another surgery anytime soon. What Heavenly news to a momma's ears. I couldn't wait to get on the phone to tell Matt. The doctor also said I could stop giving him the Diuril (diuretic used after heart surgery to prevent congestive heart failure) ....so another med Bites the Dust! Now we are down to 3 and I'm hoping that within another few months he will be down to just the Vit D suppliment to help regulate his calcium levels. Unless he is to be healed of that too....nothing is too big for my God!

Here is a pic of Asher getting his heart vitals read. He scored a 100 which is perfect! All of the wires look intimidating, but they are just stuck to little sticky tabs placed on his skin. He was funny looking up all startled at the ladies.

All in all, I'd say it was a wonderful day with some really REALLY good news! Thank you to everyone who has been prayer for our little warrior... it really does help!

Blessings!
~Erika~

Asher's "Early Steps" Update...

Early Steps is a program run through Arnold Palmer Children's Hospital which focuses on testing children's developmental progress and employing early intervention / therapies to improve low areas. The wonderful thing about this program is that it is state funded and it will pay the bill for treatments if you insurance will not! The ladies were all very nice and seemed well educated in each of their fields of study.

This is how Asher's tests results broke down: For grading purposes, the scale goes up to 115, but a score of 100 is average/good.

Using hands and body (Gross/Fine Motor Skills) - 95 Problems here relate to poor head control/strength which we can work on by adding more "tummy time" to his daily routine.

Eating, Dressing and Toileting (Self-Help/Adaptive Skills - 55 This one relates to the fact that he is tube fed and needs some oral motor therapy. We are seeing an OT next week relating to this and have been referred for 30 min a week for the next 6 months which is when he will be evaluated again.

Expressing and Responding to Feelings and Interacting with Others (Social/ Emotional ) - 95

Playing, Thinking , Exploring (Academic/Cognitive including pre-literacy skills) - 93

Understanding and Communicating (Receptive and Expressive Communication) - 95

Overall, he is right where he should be developmentally in a lot of areas....which is very reassuring.

He is still on the thin side when compared to other children his age, but when looking back to where he started, he is looking pretty good!!! Check out the meat on those legs!! ;) In fact, I think this will be the last time he can wear that cute little onesie that I like so much...it's about to bust at the buttons ;)

He is so precious when he sleeps...I just want to pick him up and squeaze him ;)

Well, that's it for now....gotta get Asher's morning feed started.

Blessings!
~Erika~

Bottle Feeding Has Begun....but slower than anticipated

Asher likes to hold / stroke his nose when he is sucking on fingers or a paci. I think it is his way of self soothing...kind of like a baby kitten kneeding it's momma while it nurses.

I finally got the OK to begin small oral feeds and I tried Asher on his first bottle yesterday morning. He eagerly gulped it down, but I did notice him sounding a bit congested afterwards so I didn't give him any follow up bottles. I think I'm going to ease him into this slowly instead of just giving him 4 feeds a day. I don't want him to get fluid in his lungs which would halt all progress made recently.

Please continue to pray for his eating skills and that all the muscles involved in his mouth and throat would be strengthened and fully restored. Also for his kidney's and heart to be restored.

We have another eco-cardiogram coming up with in the next few weeks and I'm praying to see improvement in his aortic kink ...so much so that he will not require another surgery. I don't want him to loose anymore ground developmentally by being hospitalized again.

Good news....our Early Steps evaluation has been moved up so he will have a full developmental evaluation this coming Monday. They will be able to refer him to special therapists to help him in any areas he is lacking in right now. Specifically head control / Trunk strength and feeding issues. Praise God for Support!

I'll keep more updates coming. Thank you to all of you still reading this blog and praying with us for our little man's restoration! You are much appreciated!

Blessings!
~Erika~

The Results Are In....

I headed out to Arnold Palmer with Asher this morning to have his swallow study done and was surprised by the radiology staff's willingness to try and get ALL of his tests done today. I initially had to reschedule his kidney sonogram and voiding cystogram, which had been scheduled for later that day, because the barium they have him swallow would interfere with their ability to accurately see his kidneys. Well, they were very flexible and had us do the sonogram and stuff before the swallow study. What a blessing to have all of that done within one trip! Thank you Arnold Palmer...you rock!!! The highlight of the day was the much anticipated swallow study. We first met with speech and occupational therapists who evaluated his ability to suck, which was quite strong as we can tell from all Asher's videos, although his gag reflex is still a bit sensitive. Then they had me set him in a little padded seat, which held him upright, and I fed him bottles with barium mixtures of different thicknesses. Much to my joy, he took to the bottles right away, sucking AND swallowing. Their concern, and the main reason for the study, was to watch and see if he was aspirating any of the liquid while swallowing and he did a tiny bit now and then. He did better with a slightly thicker liquid (nectar consistancy) and a slow flow nipple. Their final report recommended small oral feeds 4 times a day to help Asher readjust to taking food by mouth and to further increase his muscle strength and stamina. He tuckered out quickly and couldn't suck for very long, but at least he was sucking! ;) I have to call his doctor tomorrow and make sure he agrees with their evaluation and then I can start giving Asher small doses of breastmilk which has been thickened with a commercial thickening agent called Simthick.

When I asked the therapist about things I can do to encourage him in being able to take to the breast later on, she said that I can place him skin to skin while I feed him and watch closely to make sure he isn't getting lazy while sucking from the bottle. A bottle gives up liquid regardless of correct latch/suck/chew/gum, etc whereas the breast will not, so by maintaining good feeding habits with the bottle it will make for an easier transition later. They want to see a followup study in another two months or so, which means that much more pumping for me, but we are getting closer to our end goal.

Praise the Lord for his continued mercy and goodness! Asher truly is a "Happy and Blessed" young man, just as his name describes. Thank you to everyone who has continually been praying for him and us. .. we are seeing your prayers work!!

Wednesday morning we have an appointment with his geneticist which should be interesting. Will fill you in later.

Blessings!
~Erika~

The Beginnings of a Work From God!

I'm not sure if Matt and I mentioned our wanting a nanny on here, but over the last 3 or so days that is all we kept saying around the house. This, of course, was a wish...a fantasy...and a dream because our finances don't have room for a mommy helper in the budget. That didn't stop us from dreaming however. Well, just yesterday afternoon, while I was reading Emily's daily OHOP news email, she listed a few needs of a college student who wanted to spend 2 months of her summer vacation helping out at OHOP. She needed to find a part time job of about 15-20 hours/week which would allow her to make some money and also still have time in the house of prayer. One of the things she offered was to babysit/nanny. As soon as I saw that, something went off on the inside of me that THIS was MY NANNY! I turned the idea over in my head for a while and suddenly realized that we may be getting a small amount of money to help take care of Asher, because of his physical challenges. We could take some of that money and pay this girl to help me take care of him and my household. I never thought I would need that kind of help, but I'm really overextended at the moment and could just use some consistent help to keep everything running smoothly. I called Matt, who was out running some errands, and told him my idea and he said, "wow, I feel this is confirmation". He then proceeded to tell me about the conversation he just got done having where he was telling a friend of ours that we needed a nanny and how the idea came to him about paying for one out of that same money alotment. So, now we are walking towards this nanny thing in a very real way....funny how it started off only as a dream and a wish (almost a joke really). So, please pray that when I give my phone interview on May 13th that everything will go well with no hold ups and we will get the funds to help us meet this goal. It will not only help out our family, but the girl because I understand the prayer movement and we can come up with a flexible schedule that we are both happy with. Sweet Relief is on the horizon!!

Onto other news...Matt and I took the boys in to the pediatrician today and had them checked out. To my joy, both of them are in tip top health, taking into consideration Asher's previous 2 months, even he was in good shape except for his weight. Poor baby is in the 5th percentile for weight, meaning that 95% of babies his age weigh more than he does right now. His height is in the 50th percentile though which is nice to see that he is still growing well despite his rocky start. I'm still looking for another solution to help his weight gain, other than the addition of dry formula to my breastmilk to boost the caloric intake. I hate having to place nasty, hormone and steroid ridden cow's milk formula into my pure breastmilk. It's like throwing a mud pie into a fresh drinking water source...you just don't do that!! So, if anyone has any knowledge on this subject, I would love to hear back from you. I'm leaning towards just mixing in a little flaxseed oil to the breast milk to boost the good fats, but want to find more info on that first.

Now, I'm going to leave you with a picture from the Monday night prayer meeting at the Garden Gate.

This was taken, without me knowing, from across the room during worship. Matt is in the lower left hand corner, leading worship with his guitar, and I'm standing in the doorway with my little man in a green baby sling. Side note, Asher loved being in that sling so much that he slept for 3 hours straight....I think he was feeling like he had returned to the womb! ;)

Well, that's all for now. Gotta Get back to sleep, Asher's feed is almost finished and I'm still really tired!

Blessings!
~Erika~

HE'S COMING HOME!!

So, we were met in the hallway of the CICU today by Kelly, a nurse who has looked after Asher on and off throughout his stay at Arnold Palmer. She gave us the good news that Asher can come home TOMORROW!!! We are picking up his prescriptions around noon and then heading in for the rest of the afternoon so that we can learn how to feed Asher and administer the correct doses of his meds. Then, we are taking that sweet baby out of his little hospital bed and waving bye bye to all of the caring nursing staff which we have befriended throughout this journey...and we are going HOME! ;) I am giddy with anticipation and also quite a bit nervous. Anxious about being able to care for him in the way that he needs.....anxious about giving him the correct med doses and at the right times. It seems that I'm late for just about everything now a days and I don't want that to carry over into his schedule. But, I'm more excited than I am nervous, so I think everything will be alright. Tomorrow's stay will serve to answer all of my questions and also to give me a hands on practice while the nurses watch and make sure I do everything right.

Little bundled Asher staring at the new bigger world!!

His jungle crib toy. He LOVES this thing...in fact, he didn't even care we were in the room last night while that was playing ;)

Some more good news....they gave Asher another chest x-ray and he had NO extra fluid around his lungs which means that he is tolerating the breastmilk!!! ;) Answered prayer for sure! They have me adding a bit of formula to the breastmilk to help Asher put on some extra weight. He is practically skin and bones with a belly! Give me a month of good food and good loving and he'll be right as rain ;)

I was trained in using the feeding pump today and it seems pretty easy. It came with a rolling pole to hang the milk on, as well as a nifty travel backpack so that I can feed Asher on the go if I need to go out. In fact, I could probably feed him in my baby sling as long as I wear the little backpack around. That will help a lot since it takes an hour to feed him, every three hours.

Speaking of feeding....check out Matt feasting on Philly Cheese Steak Soup. Since I'm a breastfeeding mother, I get free meals and Matt can order a huge plate for only $5. We found out about this a couple weeks ago and have been taking advantage of it since dinners are so hard to whip together by the time we get home.

I wanted to take a moment to say thank you to Rod and Cheryl Reisman for their gift of restaurant gift cards. They are a huge blessing! I have always tried my best to feed my family well, but lately....I hate to admit it....but we have been pretty much living off of frozen pizza. So, thank you thank you for giving us another option! ;)


Well, that is pretty much it for now. We will have more to tell tomorrow after we get little man back home ;) Thank you to all who have agreed with us in prayer for our little guy to get better. Prayer works and I ask that you please keep it up when he comes to mind. He has a long road ahead of him which may include another open heart surgery in a few months, as well as dealing with possible learning disabilities, speach issues, etc. God loves this little boy so much and we want him to fulfill the purpose he was sent down here to do.

Blessings!
~Erika~

Quite A Day!

Well, today was quite a special day! It started off normal, with the exception that I was actually able to get some housework done. My immediate task is to get my house cleaned and put back in order so that it will be ready when Asher is released. We have all been sick and the house just needs a good scrubbing / airing out! So, I tackled the kitchen today and started working on some of the laundry piles while Matt took Joel to the House of Prayer. Wonder of wonders #1...Joel actually wanted to go to church.....and he was content to just be held by Matt while he walked and prayed. That is not usual Joely behavior.......he usually wants to run laps around the sanctuary and climb up on stage to play on the drumbs, etc. But, today he was quiet which gave me some alone time to work at home. Later in the afternoon Matt's sister, Erin, came to watch Joel while we took the grandma's to a child CPR / car seat class given by the hospital. It is mandatory that we take the class before they will release Asher....and it was a good class to take anyways when you have kids. Well, Wonder #2 was that Joel took to Erin right away, said "bye bye" to us with no tears and was an angel all night long even down to going right to sleep without fussing! I was truly amazed because usually he puts his sitters through a breaking in process of seeing how much he can get away with before they get tough. Well, Wonder #3 was just after the class when we stopped in to see how Asher was doing. He had been moved to a new room (closer to the door...yippee!!!) on the "outbound" side of the CICU ward AND he was being fed BREASTMILK!!! Yup...they resumed his feeds with breastmilk and I'm just praying hard that he tolerates it this time! Please agree with us in prayer that this little boy's body will assimilate all of the fats in the breastmilk....and will have NO buildup of fluids around his lungs. They are taking him in for an x-ray tomorrow which will show if there is any more fluid pooling.

Tomorrow, I'm meeting with a gentleman from a medical supply house who is going to show me how to use Asher's new feeding pump. It is similiar to the one's they use in the hospital to dispense certain amounts of fluids over a particular time...only this one is smaller and more portable. Another step closer to bringing this little one home!!! I still have to spend a night with Asher and have the nurses show me how to feed him and give him his meds, etc. That should be coming up within a day or so.

Matt hasn't been feeling well today and we are hoping he doesn't come down with the stomach virus that Joel and I had over the past 2 weeks. He is worried about being sick around the time Asher comes home because he doesn't want to get Ash sick. I think Asher's immunodifficiency is really weighing on him (me as well) because we don't know what to do to help keep him healthy besides basic hygene and eating healthy. The thought that any old bacteria or cold virus could send him back to the hospital is rather daunting at the moment and we just want him to be a happy, healthy baby boy...at HOME! Please pray that Matt gets better soon and Asher doesn't come in contact with that nasty bug! Continue to pray that Asher's immune system will be made strong and not easily compromised!

Thank you all for keeping up the prayers...we desperately need them to continue even after Asher is out of the hospital. This little boy may have quite a few challenges ahead of him due to his 22q11.2 deletion syndrome and it is only by God's grace that he will make it through this trying time! I'm positive that God has a plan for his life...he was spared for a reason and I pray that God bring him to the fullness of his purpose!

~NEEDS~ I just wanted to post a need for those interested and wanting to help. I am in need of more Lansinoh Breastmilk Storage Bags (BPA Free). I just burned through the first 50 in little over a week!! You can find them at Target for about $10 / 50 bags. Just letting the need be known!

Blessings!
~Erika~

Asher is in Surgery and Asher is Out of Surgery

Asher is in surgery in the cath-lab right now.

They are going to see about the pressure in his aorta. they are looking to see how bad it is in there. They are going to see if another surgery is dire and needs to be done as soon as Monday or as long as a month or maybe even not at all (please God!!!!!!!!!!!!). Please keep us in prayer. We still need it now more than ever.

We will keep you updated.

Hey Dr. Dave just walked in. Here's an update already.

They are all done.

The left side of the heart is squeezing really well and not straining at all....a concern they initially had.

The ascending aortic arch is narrow but not too bad. They may have to operate in a few months but the possibility is still there that it may grow and heal on his own, but the doctor doubts it. (Sounds like room for a miracle!!) He is going to wait because he feels that there is a big advantage to waiting as far as letting Asher's body heal from the first surgery. Thank God, the issue isn't as pressing as it initially presented or could have been. His body very well could heal itself!!!

So the doctor says that this is all good news.

Pray that over the next few months Asher's aorta heals and that the obstruction in his heart heals so that no invasive surgery is needed.

Pray that he remembers how to eat so that we can take him home soon.

Pray that he would pass his swallow study and that he wouldn't need the "g-tube" put in.

Pray that he be able to digest fats in the breast milk.

Thank you all. Your awesome!!!

Blessings in Jesus' Name!!!
M@

You all sure pray well! Some relieving news.

Okay, so I called the hospital a few minutes ago to get the skinny on Asher and came back with some promising news. They told me that they are going to watch him for this week to see what happens and then send him to the cath-lab to do the surgery from a major artery in his groin instead of opening him up again. That is promising and WAY better than having to have him go through open heart surgery again. That was just too much. I mean, God brought us through and I figure He would do it again if need be but I'd prefer not needing to go through all that again. Ya know?

So, they gave us a week to pray creative miracles into existence for Asher's little aorta. I believe that God can do it in less than a week. He only took 3 days to raise Christ from the dead so a week is more than enough to do the work needed in Asher's heart. Wow, this is a pretty crazy ride eh? God is good and He is still here with us. He is for us... who can be against us? Praise God! I like God! He's a good one. He created everything I love in this life, second only to Him of course.

He did such a great job creating the Blue Ridge Mountains and the sea and all the forests. He did some great work up in Washington state with all that beautiful greenery and mountains. I like the beach. He is great at making beaches. The best I know of even. No can make a waterfall like God. I like all those animals He made too. He created Erika and Joel and Asher too. They're awesome. He also created all of you wonderful people too. He really likes you. Did you know that you are His favorite. Yep. It's true. You are His favorite. So sit there for a minute after reading this post and say out loud. "I'm His favorite and He really likes me." then just sit there until you believe it. The Love of God is going to cover you and bless you and maybe even make you cry at the fact that you are that loved by your Daddy God.

Amen. Daddy, put a new heart in Asher, please? Thank you that you're a good good Father and that you give good gifts to your children. Even new hearts and chromosomes and stuff. Just like you created the mountains and the sea, the sky at sunset and the sun. Would you create a new heart in Asher within these next few weeks and give the medical staff humility and eyes to see that they have witnessed a miracle. You're awesome! Thank you!

Bless these people. Let them know how much You Love them. Tell them all personally that their your favorite.

Mmmmmm. I like His Spirit. I'm gonna go hang out with Him for a while.

Love you all.
You'll be hearing from us soon.

Blessings
M@

Our Little Happy Intercessor!

Well, our little warrior is fighting the good fight! He is finally weened of the Precedex and is now receiving full size feedings for a baby his age. The swallow study has been scheduled for sometime next week which gives him a few extra days to regain his full strength before they test him. I believe that he will not have any problems swallowing and will be able to be bottle fed until we can try him again on breast milk. Please stand with me in faith for his muscles to be strong and his vocal chords to once again function normally!

Momma's handsome boy...is very curious about things in his room. He loves looking out the window when I hold him, or finding the mylar balloon that Mamma Glenna bought for him on his one month birthday.

Our happy little intercessor

I just love this picture of Asher...it looks like he is smiling because I think he really was! He was so alert and interactive...that is until his morphine kicked in..then he spaced out a little bit. I am going to be so glad when we are done with all these drugs. I want to start working with my pediatrician to clean his little body out and help build up his immune system again with things like probiotics. I have asked two different hospital staff about giving him some probiotics while he is in the CICU and they looked at me like I was off my rocker. The last lady actually told me that they can't administer anything "homeopathic" and especially nothing that isn't approved by the FDA. All that was running through my mind is......"wow...I wouldn't have labled YOGURT as homeopathic!?". I'm so surprised that more doctors/nurses aren't aware of the necessity of building a body back up after giving antibiotics, which do effectively kill the bad bacteria..but also erradicate the beneficial bacteria as well. (Bacteria that aid in digestion, for example)

But, enough about that. It's late and I'm heading off to bed after saying a quick thankyou to Lesley and Ray for bringing us a DELICIOUS veggie casserole this evening. We truly appreciate your time spent and your giving hearts!

Blessings!
~Erika~

"I Got To HOLD Him!"

This is the first time I have held him since running him into the ER over a month ago!

Matt and I headed to the hospital today like usual, but this was to be no "normal" day. First, we were told that his blood culture had come back negative for MRSA, which meant that we didn't have to wear the hot yellow gowns anymore. Thank you Jesus! Then, when we got close to the room I noticed that Asher had a blanket over him, which I didn't think much about it, until I got right up next to his bed and realized that he was dressed and swaddled. This was a first since arriving at the CICU. Usually he is kept undressed except for a diaper and warmed by a heating unit above him. The nurse explained to me that he had been having a difficult time regulating his body temperature...it was common among babies with his heart defect...and needed the heating lamp. But, today he had started regulating his temperature all by himself which meant he could wear clothes now. It was wonderful to see him looking like a normal baby again...all swaddled and cozy. Then the big surprise....she said I could hold him!!! It felt so good to have him back in my arms again. I was nervous to move around too much because he still has a bunch of tubes and wires that follow him around and I didn't want to make his sternum hurt. But, just sitting still and looking down into his precious little face was enough to make me forget about all those inhibitions. An hour and a half just flew by in no time at all and we had to leave so I could pump again. I think the only thing that made me even want to put him down was that his breathing grew more labored and I wanted him to rest comfortably. So, this was a mile marker day!

Take a look at some more pics:

Trying to get things situated

Getting comfy back in bed

He was so alert after we put him back in bed. I've noticed that his eyes are looking more mature now than the little newborn's I brought in here.

Even though today was a good day, I did get a bit more information regarding his condition which needs to be covered in prayer. The nurse said that 95% of babies with his heart condition and repair have feeding problems...most of them require to be fed by an exterior port in their stomach called a G-tube. It isn't permanent, but it isn't God's best either! I'm standing in faith that he will be part of the remaining 5% that wow's doctors with his amazing recovery and ability to eat without aspirating his food. I believe he will drink breast milk and will be able to nurse shortly. I believe that his immune system will function at peak condition and that he has all of the T-cells he is suppose to have to work properly. I believe that he isn't going to have any speech delays, especially caused by a defective soft palate. He is going to be made whole in the name of Jesus and by the blood of the lamb that was slain for him! Please continue to join your faith with ours for this little warrior to receive a miracle healing!

God Bless!
~Erika~

Alrighty We got a bit more focused on God

So today and yesterday are like night and day. Not only in how Asher is doing but also where our faith is.

Today Asher was looking WAY better. He is still not out of the woods by any means. But God is good and He will break in and save because that's just what God does. Asher was alert and awake when we went to go and see him tonight but we had to wear these gown things to make sure that we don't spread any possible infection that Asher may have. We have some new targets for you as they found a possible infection in his groin area where they have a central line IV that has been there for a little while now. You all are awesome at this whole prayer thing. Thank you so much.

Prayer Points:
Pray that God would kill the possible infection they found in his groin IV.
Pray that his airways would be opened.
Pray that he would take food well and that his digestion would work properly to get him some needed energy.
Pray that withdrawl from the pain meds would be minimal.
Pray for The Spirit of God to abide in the room with him.

God really showed me a thing or two today about praying from His Presence. I'm reading this book called "The Happy Intercessor" by Beni Johnson. It is AMAZING and a real now Word from the Lord for us. (Asher Amos means happy burden bearer or happy intercessor. You can see why it caught my eye). Right now it is talking about how we are to pray offensively instead of defensively. We are to pray from the place of victory looking down at our circumstances from the presence of God instead of praying from the place of lack and desperate need. It's just a really good and welcome perspective change.

Erika and I decided that we were going to pray in the Spirit the entire way to the hospital and that the atmosphere was not going to change us but that we were going to change the atmosphere by The Holy Spirit. It worked out really well. I ended up getting really happy every time I said "Holy Spirit". It was great. I couldn't explain it but I really liked it. So we went into the hospital at peace and charged up with the presence of God. It was a good visit. Here are some pictures of the whole thing today.

I was just speaking LIFE over this little man and he was looking at me and responding to our touch again. It was great. We still have a long way to go but this was a good day.

Here is Erika acting silly while I play with the camera. Notice the funny gown things. Very nice.

Okay so I would usually type way more onto this post but it's once again getting late. I look forward to hearing from you all via e-mail or comment. It's a huge blessing to hear from those of you who check the blog out and pray with us. Your all awesome and God really Loves you....so do we!

Blessings
M@

Asher Is Making PROGRESS!!

I know the news has been slow in coming lately, but that is how the progress has been......slow, but STEADY! He is steadily getting better, thank you Jesus!

We called in last night to check on Asher's progress before we went to sleep and were informed that they had taken out his catheter AND that he was peeing on his own (a very good step for someone who had been catheterized for a long time). One less tube to deal with and one less place for infection to set in.......meaning one step closer to coming home!

Today when we made our afternoon visit, little Ash was wide awake and looking around the room while sucking on his ventilator tube. It was heart warming to see this little kid do something normal again, even amidst the hoses, tubes and Bee-bops going on in the room. He use to suck on his lower lip and stick out his tongue during the first days he was home with us......so it means a lot to see him do it again ;) There is evidence that he is still having seizures which concerns me. Although the doctors are saying that they don't see the evidence on brain scans....you can tell that his eyes are not responding during certain times and his arm will shake a little bit, both of which point to the fact that he is seizing. They are giving him more meds to trouble shoot whether it is a seizure or not....if he responds favorable, then they will know for sure and can treat it effectively.

Here is Asher holding onto Momma's finger with both hands.

We were told that they are going to start feeding him tomorrow to see how his digestive system responds. They will have to feed him with a feeding tube directly into his tummy until they make sure he can tolerate the milk and until they do a swallow study to make sure everything is working properly after the surgery. I'm just happy that he will be getting some of the milk that I have been dutifully pumping every 2-3 hours since we came in here. It's a tough job that only I can do and I lovingly offer him my time both night and day to give him the best start possible.

They are weening him back on the amount of Oxygen he is receiving through the ventilator to make him breath a bit more. Hopefully he will be ready to get off the vent by the end of this week.

Pray that his edema will continue to go away.

Pray that his lungs will be strong enough to sustain him, when they remove the ventilator, without the need to go back on.

Pray that his seizures will END, in the name of Jesus!!!

Pray that he will completely tolerate and THRIVE on the breastmilk without any nausea, vomiting or bloating.

PRAY HE COMES HOME SOON!!!!!!!!!!!!!!!!! we miss him!

Thank you for keeping track of our little boy and offering up your prayers for him. It means a lot to have all of your support. Keep up the good work!

Blessings!
Erika ;)

The News on Asher and the Rest of the Family

Okay, you guys are awesome!!!!! Thank you so much for all of your prayers and all that you have been doing for us as a family.

Asher is awake right now as I type this update in his room in the ICU. He's looking up at his Mommy. You can see the bandage over his chest wound that is healing up well.


Pray for Erika as it is hard for her to not be able to pick up and hold her little boy. She's such an amazing mother and it's been really hard on her as he is wide awake and we had a doctor tell us that his blood pressure goes up when we are around because he wants us to hold him. It broke her heart hearing that.




His chest was closed up today and he is doing well. However he still needs to be lifted up concerning certain areas. He is responding well to the meds that make him pee as he is peeing just the right amount which is awesome. Erika was a bit overwhelmed today as she read the pamphlet on the 22q11.2 deletion syndrome that was given to us by the geneticist the other day. We are at the beginning of a huge battle. I for one have handed it over to The Lord because we simply aren't strong enough to fight and I praise God that He is Mighty to Save and that he rides the heavens to help us. He is mighty in battle and there is no battle that he loses.

The first step towards recovery is to ween him off the ventilator and to get him breathing on his own. Then the next goal is to get him eating and taking in food on his own (breastmilk WILL GO DOWN IN JESUS' NAME!!! declare this with me please.) At some point they are going to do a swallow swallow study to see if all works properly in that department and some time shortly after all that we will be able to take this beautiful boy home with us.

Prayer Points are as Follows:
Pray that his blood pressure normalizes.

Pray that the Edema in his abdomen and limbs would go down so that his lungs wouldn't be restricted at all and that he can be taken off the ventilator to breathe on his own ASAP.

Pray that he would be able to have breast milk. That he would not only tolerate it but THRIVE on it.

Pray that he tolerates feeding and has no signs of swelling, vomiting or diarrhea.

Pray for no seizures at all, of any kind, EVER.

Okay, so that pretty much covers whats happened today with Asher. I would appreciate some prayer going up for Joel and Erika and I. I was holding Joel today and he said to me "ah home?" (translation: wheres home or something like that) I asked him if he wanted to go home and he thought for a minute and said to me "yeah". I then told him that we were trying to go home as soon as possible and that we would be home as soon as Asher was all better. This broke my heart. I grew up in a fragmented family and I HATE that my family is fragmented during this time. I hate being apart from my boys. It is starting to wear on us a bit and we could use some prayer for grace to go through this part of the process of having one of our kids hospitalized and the other at grandma's house. I really just want to be home with both my kids and back to a normal healthy family life.

So here are some pics of a really sweet me Erika and Jesus moment we had on the top of the parking garage at sunset. It was like a little oasis of time for us in the midst of this stuff. Enjoy.

My Beautiful Wife. God has so blessed me. You can see the love she has for me in her eyes. I don't deserve her but God pours out His mercy so abundantly on me.

He Looks GREAT!!

I am overjoyed!!!....and quite a bit tired after having gone through this roller coaster ride today. But, before I take a much needed break and eat some real food, I wanted to post one more time and let you know how Asher did.

I just spoke with the nurse who is looking after him post-op and she told me that he is "Surprising Everyone"...which just made me laugh at how good our God is. I asked about his kidneys and how they were functioning (because the doctors said they would get worse after the surgery) and she said the average baby pees about 3 cc's an hour after surgery...Asher peed out 18 cc's last hour and 10 cc's this hour....so it's pretty safe to say they are working beautifully!! And the last bit of news that just blows my mind is about his Aortic blood vessels. The doctors were concerned that this surgery would be extra long due to the abnormally large distance between the disconnected vessels, not to mention the irregular shape of his Aorta. Well, as they maneuvered the vessels around, the two came together almost perfectly end to end!!!! HOW GREAT IS OUR GOD!?

We can only see him sporadically and for short visits over the next 48 hours to let him heal so updates may be minimal, but we will keep you updated as soon as we have news.

Pray that the swelling and bleeding are kept under control and that they can close up his chest as quickly as possible to reduce the threat of infection.

Thank you again my fellow prayer warriors! Asher has come a huge step forward today but still needs your prayers for his road to recovery!!

Blessings!
~Erika~

We're back in the CICU!!

Asher is back in the Cardiac ICU. WOOHOO! They had to leave his chest open due to swelling and he has plenty of tubes sticking out of him for drainage, but he made it through. I'm excited to see him again....but a little hesitant at the same time. No one wants to see their baby look like that.....but at least he made it...he's ALIVE and breathing! THANK YOU AGAIN JESUS!!!

We will be able to see him in another hour or so and will post again once we get a glimpse of the little guy.

Again...thank you to everyone who set their faces to the wall and denied their bellies food....all to see the destiny of our little guy become a reality! Keep at it! Our next battle is against post-surgical swelling, bleeding, infection, etc. But before we go there...lets just take a huge sigh of relief and sing the praises of our God!!! He is worthy of all Praise and Honor!!! Sing these praises to your friends and neighbors....tell them that God is worthy!! He hears the prayers of his children and answers! Miracles do happen today!

Blessings!
~Erika~

Surgery Update #3

We just heard that the actual heart surgery is finished. They are in the process of warming his little body back up (they had to cool him down to about 80 degrees to slow down his body processes) and when they did, his little heart started again on its own and is in perfect rhythm......THANK YOU JESUS!

They were able to connect his two vessels end to end...without any other patch tubing....THANK YOU JESUS!!! Lessens the chance of subsequent surgeries later on.

VSD's – ventricular septal defects (2 holes) were patched using Asher's own tissue taken from the paracardium (the sack around Asher's heart).

There is still not much bleeding at this time. They say it could increase after he is removed from the bi-pass machine and they are taking precautions by placing drainage tubes in his chest for a while after the surgery.

Pray that the suture site within the vessels does not create scar tissue that limits the flow of blood. Pray that Asher's heart grows and remains strong for the rest of his life. Pray that his bleeding and swelling post-surgery will remain under control. Pray that his heart rhythm remains steady, strong and normal. Pray that he would undergo a smooth transition from surgery to recovery.

THANK YOU GOD!!! That's all I can say. And thank you friends and family for all of your prayers. They are working...keep it up, we still have more ground to take in this battle!

The Surgery is ON for WEDNESDAY!

Well, the surgery is definitely on for Wednesday (tomorrow). I heard once today that it had been canceled but now it is back on. I've been eager to get to this day...wanting to get through the surgery and put it behind us, but now that it is here, I'm feeling a little nervous as well. All of the possible scenarios that I have heard over the past 2 weeks are playing over in my head and it is getting a little hard to stand in faith on the promises we have over him. So please pray for Hope and Faith to arise in our hearts and minds....that we would be sustained in Joy and Peace through this surgery and the recovery period.

I did receive some good news today. The doctors performed an MRI on Asher's brain and upper chest yesterday and although we are still waiting to hear about what they found out regarding his heart...they said that his brain is fine. That means no bleeding and in perfect working order with everything firering as it should....THANK YOU JESUS!!

So, lets define some more prayer targets. Matt isn't feeling up to par, so he is resting back in the room which leaves this task up to me. ;) I know he has spoken previously about organizing 24 hour prayer watches with small groups gathering to each take at least an hour of prayer for our little boy. The goal here is to achieve continuous prayer and fasting and blast the Heavens for Asher's healing.

Pray for the surgical staff, that they be graced with supernatural skill and keen senses needed to make split second decisions. Pray that Angels accompany them to steady their hands and be the extra help they need. Pray that all of the blood used be completely free of anything harmful to my son. That his body remains strong before, during AND after the surgery without any degeneration of his brain, or other organs. Pray that his heart is easily and quickly mended and that it will work 100% on it's own without the need for a pacemaker. Pray that bleeding will be controlled during and after the surgery. Pray that no nerve damage will occur that leads to feeding issues, vocal chord issues, etc.

Post Surgery, continue to pray for no excessive bleeding, edema/swelling, infections or any damage to his eliminative organs. Pray restoration and healing to his already delicate gut. Pray that his lungs will stay clear and strong and that Asher could come off the ventilator in good time. Pray that he doesn't develop an intolerance to the fat in breastmilk...as he needs all of the immunities he can get.

Well, that's all I can think of right now. He is scheduled to wheel into surgery at 7:30 am and they should be starting to work on his heart by 9:00'ish. It is anticipated to be a long surgery since the two vessels they are working to connect are quite far apart and then they have to repair the septal hole inside his heart. It is an intense surgery and Asher can use all the prayers that you faithful saints can offer up.

We will be updating the blog as news comes to us, as well as sending out email updates on urgent pray matters. Thank you all for your faithfullness and loving support of my entire family, from Asher out to the grandparents.

Blessings!
~Erika~

Asher's Swelling is Down....And a call to DONATE!

Praise report time!!! Asher's waist measurement is about back to normal....a good 37 cm down from 41+ cm the other night due to all of the edema and swelling. Praise God! He is actually looking like himself again. Check out my handsome boy ;)

Oh...he just makes me want to pick him up and hug him!!

His little body....Free of excess water

A Call to Donate: (Thanks to Dixie for donating already...you rock!!!)
Now that Asher is on the mend...he is ever getting closer to surgery day. If anyone would like to donate blood for my darling boy, I would be so greatful. One concern we have for Asher is that he is at risk for Hep B due to the blood transfusions he is receiving. All blood is scanned before it is used, but there is a chance that an early infection wouldn't show up in the blood screen and he could catch it. Matt and I don't believe in vaccinating our children until they are at least 2 years of age to give their bodies a chance to develope further without the burden caused by the vaccinations. We have also recently received the news that he has tested positive for a Chromosome disorder called DiGeorge Syndrome which could present itself as learning dissabilities, mental disorders, etc. I am even more concerned that this disorder could put little Asher at an increased risk of responding badly to the heavy metals found in most vaccines...so giving him the Hep B vaccine isn't my first priority right now. (I'm weighing the pro's and con's with his pediatrician and we will make an informed decision about this when the time comes).

I said all of that to put the word out about Blood Donations. I would feel so much more peace if I knew where the blood was coming from and that it was indeed clean. Asher is A+ if anyone lives in the area and is interested in donating (I believe he can take A- and O- as well). The blood would most likely have to be donated on Monday in hopes of getting processed in time for his surgery mid week. If you are interested, the info is:

Blood donation for Asher A. Bond at Arnold Palmer Hospital (they should have him on file)

Florida Blood Center (main number)
1-888-9-DONATE

Clermont Location
352.241.7543
1200 Oakley Seaver Blvd. (located in the plaza behind Sonney's BBQ ...on the first floor)

Michigan Street Location (south of 408 and just off of I4)
407.835.5501

Please send me an email if you go do the donation. I want to know who to thank for giving my son the life in their blood ;) Email: mattanderikabond@gmail.com
~Erika~