Two Years Old!

Malachi turned two on November 2nd. Wow! Has time flown by! So much has taken place, and is yet to come. I can honestly say that every path, every part of this journey has been plotted and planned by our Great God. Everything that we didn't understand why it was happening, was all orchestrated by Him and later shown why He allowed it. I can thankfully say that I have gotten a little better with things than I used to. My old reaction would always be to get angry. Now, I try to see what the Lord is trying to teach me.

A few months back, Malachi had his heart catherization. It ended up taking seven and a half hours, when it should've only taken 3 at the most! We also found out that his stent had been completed occluded, so the cath doctor, Dr. Holzer, had to go in with a radiofrequency to "burn" out the tissue that had blocked the stent. He also told us that Malachi would now have to be on blood thinners, now that a blind pouch had been discovered while in the cath lab. It was all so overwhelming, but for once, I seemed to handle it better than in the past. (Which all praise goes to God our Father!)

The process of getting Malachi therapeutic on the blood thinners, was very stressful. He had several blood draws that were very hard on him and sometimes daily. We (Philip) were also having to give him shots twice a day, until he got therapeutic. It is hard enough watching someone else "hurt" your child, but even harder when it is you! We had to keep reminding him and ourselves that it was to help keep him safe.

Now that Malachi has turned two a lot has changed. He is developing his personality, which is such a sweet one! He still has his "make people feel special-ness" about him. He is starting to take more steps on his own (which is the first picture), and is eating much better. We still struggle daily with the reflux, but have learned to manage it. It is a constant prayer for healing, but known that it may never be. We see many specialists, but are thankful for all the help in many of his "conditions." I had made a list once of all the specialists he has seen in his short life, and it makes me sad, so I stopped counting! :o)

We are very thankful that we are where we are today. Malachi is healthy and growing. We look anxiously at the Spring, when surgery will now be, but see it as yet another opportunity to trust our Savior. Thanks again for all the prayers and support. We love you all more than you will ever know!

Love,
April or all
Revelation 2:10

Malachi Surgery Rescheduled for the Spring...

I wanted to update everyone on the latest with Malachi. We met with his Cardiologist, Dr. Teske, yesterday, October 20th. We had our list of questions and he took his time answering them all, very thoroughly.

Malachi had his initial check-up. His oxygen saturations are right within range where they want them to be, his coloring looks good, and he is feeling better. With all of those things, Dr. Teske said that he felt that it would be best for Malachi to wait and have his heart surgery in the Spring. (Probably sometime in May.) This would get him through cold and flu season, and keep him out of the hospital.

He will see Malachi again in April, unless something arises before then. They will do a sedated echocardiogram on him, to get good pictures of his heart for Dr. Phillips, the surgeon. They will see him again, for a check-up, and then get him scheduled for surgery sometime in May.

We felt very at peace about the decision. We have been praying for guidance for all of Malachi's specialists, especially his heart doctors. We are completely fine with waiting. We are still going to work very hard at keeping Malachi healthy, but are glad we don't have to be quite as cautious!

We are so thankful to everyone who has prayed for us and encouraged us in so many ways! We are blessed beyond words!

Trusting in HIS timing,
April for all

Romans 8:28

What is to Come...

Dear All,

We wanted to let everyone know Malachi's heart surgery date of Tuesday, November 10th, 2009. He will be the first case at 8:00 am.

We met with Dr. Philips today, and he was very nice. We are very comfortable with him and appreciate his humbleness. Malachi's surgery will involve:
(1) removing any scar tissue that has developed since the last surgery (which took a long time to remove last time);
(2) they will attached his inferior vena cava to his pulmonary artery;
(3) they will ligate his "blind pouch";
(4) they will open up his Pulmonary artery and graft in artificial tissue to make the artery bigger;
(5) and they will remove the PA band that was left after his last surgery.

The surgery is very invasive and is estimated to last 8 - 9 hours, due to the rebuilding of the artery, and removal of scar tissue. There is also a greater risk of developing fluid in his lungs, due to being on a heart/lung bypass machine for so long. Dr. Philips did tell us that he leaves a hole on the right side of Malachi's Atrium that helps his lungs adjust to the pressure change, and this also helps with fluid in his lungs.

Malachi is estimated to be in the ICU for 3 - 4 days after surgery, and then he will go up to the heart floor (C5) after that. We are anticipating at least a week long stay in the hospital, possibly two weeks. We also found out that any type of respiratory infection, cold, or any other infection will delay the surgery about 6 weeks. So our biggest prayer is that Malachi will not get sick at all before surgery.

It was a lot of overwhelming information. It is hard to think of having to walk down this road again, but we are trusting that our Lord is taking care of us once again. Malachi will have so much to share someday, of our Great God's Protection. We are so blessed and honored to get to be his parents. Thanks for praying for us, we appreciate it more than you will ever know. We love you all!

In His Loving Hands,
April for all
Psalm 56:3-4

Great Quote!

"This life I've been given has not in any way been easy, but I would not give up my special heart for anything. It has taught me so many things and has taught others around me as well. I'm on a mission from God and I WILL complete it with no regrets or ever thinking that this heart I was given was a just a horrible mistake. God doesn't make mistakes." - quote from Lauren a 21 year old HLHS survivor.

The Next Few Months...

Malachi is wearing an eye patch to help his vision. He was diagnosed with Amblyopia (lazy eye) a few months ago. He now has to wear a patch over his good eye four hours a day to help strengthen his lazy eye. He looks pretty cute in it, as always. :o) Unfortunately, he does have to have surgery to correct his vision problems. They will go in and cut his optic muscle and reattach it to straighten the eye. This is normally a simple outpatient procedure, and will be done possibly during his heart surgery in October. He also has to have his tongue snipped from the bottom of his mouth because he is tongue tied. (This is also a simple procedure and will possibly be done during heart surgery.)

Malachi is scheduled for a Heart Cath on Thursday, September 3rd. It is his Pre-Fontan Cath. This will be to measure the pressures in his heart and check his Pulmonary Artery that is narrowed. This allows the surgeon to know "what he's getting into," so to speak. After the Cath we should hear when his Heart Surgery will be scheduled. (Probably Mid-October.)

Then he will go in for his heart surgery, which can take anywhere between 6 - 8 hours. We anticipate the longer timeframe, as Malachi has a lot of scar tissue that needs cleared away and he will have his Pulmonary Artery cut and grafted with artificial tissue. We also anticipate a long stay in the hospital, at least two weeks. (We are preparing for the longer, in hopes for the shorter!) After the surgery we pray it is the last one.

We have learned a lot about our Savior through all of this. He has been a Constant in our life. A Sustainer, and a Protector through it all. We don't look forward to the next few months, but we trust that God is taking care of us, as always. We pray that we learn all we can the first time!

Thanks to all who read the blog and pray for Malachi and our Family. We are so blessed!

Love and hugs,
April for all

More pics...


A picture of God's handiwork! I love his little chest!

Things I am Learning...

This is really good...

"'Have you entered the storehouses... which I reserve for times of trouble?' Job 38:22-23

Our trials are great opportunities, but all too often we simply see them as large obstacles. If only we would recognize every difficult situation as something God as chosen to prove His love to us, each obstacle would then become a place of shelter and rest, and a demonstration to others of His inexpressible power. If we would look for the signs of His glorious handiwork, then every cloud would indeed become a rainbow, and every difficult mountain path would become one of ascension, transformation, and glorification.

If we would look at our past, most of us would realize that the times we endured the greatest stress and felt that every path was blocked were the very times our Heavenly Father chose to do the kindest things for us and bestow His richest blessings." -A.B. Simpson

"If we could see beyond today
As God can see;
If all the clouds should roll away;
The shadows flee;
O'er present griefs we would not fret.
Each sorrow we would soon forget,
For many joys are waiting yet
For you and me.

If we could know beyond today
As God does know;
Why dearest treasures pass away
And tears must flow;
And why the darkness leads to light,
Why dreary paths will soon grow bright;
Some day life's wrongs will be made right,
Faith tells us so.

'If we could see, if we could know,'
We often say,
But God in love a veil does throw
Across our way;
We cannot see what lies before,
And so we cling to Him the more,
He leads us till this life is o'er;
Trust and obey."

Excerpts from "Streams in the Desert" July 29th.

In Jesus Holy, and Precious Name, Amen.

Malachi Rides a Horse!

Here are some photos of Malachi's first horse riding experience! He LOVED it! He is definitely a child that loves to try new things. He got really excited when the horse started to walk around. He yelled in delight. He was so cute! He is growing up so fast! No steps on his own yet, but I am pretty sure they will come any day!

Also, his Heart Cath is scheduled for Thursday, September 3rd. It is a Pre-Fontan Cath. They will measure the pressures in his heart and get an idea for the surgeons to know what to expect at the time of surgery. We don't have the surgery date, but expect it sometime in October. We are looking forward to having the surgeries past us. This time will be especially hard, as Malachi is older and can let us know more how he feels. We know that the Lord will be our strength and guide us through once more. May we learn all we need know the first time! Love and thanks for all for your faithful prayers!

Love,
April for all!

Proverbs 3:5-6

Malachi's First Beach Experience!

Here are just a couple of pictures of Malachi's first beach experience! We went to Panama City Beach, FL with Philip's cousin Matthew and his wife Annie. It was so fun and Malachi loved it, until the salt water got in his eyes!

He is getting so big and growing up so fast! He has started crawling, and when he gets excited, he "hops" like a frog! He is still walking and holding onto things, and we think he will take off and start walking by himself at any time.

He will be scheduled for a heart Cath sometime in August or September, and then surgery will be scheduled sometime in early October. We will update when we get the dates, and a reminder of what all will take place for his (hopefully, Lord willing!) last surgery on his heart. Thanks for your prayers!

We just got back from a fun week of camp at SEYC, and are getting ready to head up to PAYC! Everyone commented on what a miracle Malachi is! I sometimes take it for granted that he is here with us and doing so well! God is good! We are blessed beyond all else!

Love,
April for all

Here are a few more photos:

Feelings of...

Here are Malachi's new glasses! Malachi is looking more and more like my Dad!

Onto the post...

We have a sign above our bedroom door that states, "If your Bible is falling apart chances are your life is staying together." I believe wholeheartedly in that statement. I see it everyday I walk in and out of our bedroom. I see it when I am running into the bathroom to rinse out yet another container Malachi has puked in throughout the day. I see it when I get home from a day of running around to doctor appointments, and times out with family. It is a constant reminder, of how I fail sometimes daily to live out that statement... to be in the Word daily.

Times when I struggle and question things, is when I am not "wearing out my Bible." I was so humbled by a couple who came and spoke at our church over Memorial Day weekend, the Armstrong family. I was encouraged as well, by their focus and devotion to the Lord. I will never forget the words echoed by Mrs. Armstrong when they found out that her husband had cancer. She said, "Okay Lord please let me learn everything You want to teach me through this the first time, so we won't have to go through this again." She went on to say that she didn't want to "waste her suffering." I have heard that statement and even prayed that in my own life. What amazing truths!!! I cried the whole time, feeling hopeless in my own "wasted time" for the most part with Malachi's journey. So many times I have gotten so angry with what was happening, instead of learning what the Lord was trying to teach us. I think the worst thing of all is getting complacent, not really "feeling" anything, just kind of going through the motions, and not seeking out what the Lord had for us.

What a hard thing it is to be the forefront of suffering. Many days I feel as a failure and simply hopeless. Obviously those feelings are not from the Lord, but I do know He desires more for us and more from us. So I guess I am writing to seek a renewed sense of what the Lord has. I want a fire in my heart to get me motivated and moving towards all that the Lord is doing in our lives. He deserves all of me, not just parts. He deserves every bit that I am, so that He can use me. I must start by "wearing out my Bible." There is no way that anyone could know or understand what the Lord is teaching them, if they aren't talking to Him and hearing back from Him.

I have no clue if this post even makes sense, but I felt that I needed to write a good honest post. Thanks for those of you who read these. I appreciate you allowing me to be real.

Love,
April
2 Timothy 2:13

Malachi is Growing up!

We are enjoying Malachi getting older and developing more and more of his personality. He is standing and walking around holding onto things and scoots on his bottom while sitting. I thought that day would never come!

We saw his Cardiologist on April 10th and found out a tenative schedule for the next few months. Malachi will have a sedated Echo done on June 16th (Philip's Birthday) to check the narrowing in his Pulmonary Artery. After this they will have a Cardiac Conference about him. They will be discussing either doing a Heart Cath to "check" things and schedule him for surgery, or just schedule him for surgery. Dr. Teske, his Cardiologist, wants to have the surgery done before RSV season... RSV is a very deadly respiratory infection that is bad for children with heart conditions. RSV season starts in either September or October. I asked Dr. Teske if it was bad to do Malachi's surgery before he turns two, which is in November. He said that doing the surgery sooner is fine. Philip and I look at it as getting it "over with" before Thanksgiving and Christmas time. We are praying this surgery will be Malachi's last, as there is no guarantee that Malachi won't need more sugeries in the future.

Enjoy the pictures we took at Easter. He is such a "ham!" Thanks to all for your constant prayers and support. Hope this update helps inform everyone on the latest!

Love you all!
April for all

Psalm 56:3-4

How Far We've Come...

One Year Ago...Christmas 2008...



Looking back on 2008 there was quite a bit that happened! We took Malachi home just before Christmas 2007 and got to spend New Years at home as well. Over the next month we were back and forth to Pittsburgh, with accidentally pulled out feeding tubes, heavy breathing, and appointments. We got re-admitted to the hospital on January 22nd, 2008. We remained in Pittsburgh until Malachi's next surgery, the Glenn, on February 22nd, 2008. That was the worst thing to have to see him go through, so far. He was so swollen from the surgery, and was on a pacemaker. I really thought, he was going to end up needing a heart transplant. His recovery was horrible. He experienced the worst migraine headache over the next two weeks after the surgery. We took him home on March 1st, 2008. He was still experiencing the migraines, and it was such a hard thing to have to watch him deal with. He would sleep, and then wake up and cry from the pain. He had very sporadic times of peace. We went back to Pittsburgh for a visit and once again got admitted to the hospital with low oxygen saturations on March 12th, 2008. They determined that Malachi was going to need the heart cath, to fix the narrowing in his pulmonary artery. We had Malachi moved to Columbus on March 19, 2008 after lots of prayer, and the open door with Philip getting a job at the children's hospital. We remained in the hospital in Columbus, until Malachi had his G-Tube surgery (feeding tube placement) on March 31st. We then went home on April 4th. Malachi then had his heart cath to fix the narrowing in his pulmonary artery, on June 2nd. That cath revealed a lot about his heart. The cath went well, and they were able to put in a stent to temporarily fix the narrowing. We went home the following day, and only had check-ups and normal baby stuff to deal with... along with his never ending reflux issues.

I can't say that every test, every trial, every heartache we experienced along the way was a "good" growing experience. I think most of the time I failed at learning what the Lord was trying to teach me. I did however, finally understand what Job meant when he said, "So that my soul would choose suffocation, Death rather than my pains." Job 7:15... my paraphrase, "I would rather die, than deal with all of this "stuff." It got to a point with me that I wanted the Lord to just take us home, and Malachi wouldn't have to suffer anymore. I still ask the Lord why He has chosen to allow Malachi to go through so much, and continues to go through so much. I know I may never get an answer, but I am going to keep asking. I keep asking the Lord to heal Malachi's reflux problems, and I know that He may never choose to heal him, but I am going to keep asking. Maybe He'll be like the Judge in Luke 18:1 - 8. It talks about the widow who kept going to the Judge asking for protection, and because she kept asking, he finally answered her request. It goes on to mention that Our Heavenly Father will hear the requests of the righteous, but the end is very sad... will He really find that there was faith (to believe He would answer) once He has answered. It is such a great passage. Gene Cunningham referenced this passage while going through the James study. I have often reminded myself of it.

Now it is 2009 and so much awaits us. We found out just before Christmas that Malachi has even more narrowing in his pulmonary artery. There was talk of a cath in Mid-January, but now we have received a different plan. Dr. Teske, the Cardiologist, met with Dr. Phillips, the heart surgeon, and Dr. Cheatham, the Cath doctor, to discuss the best plan for Malachi. They determined that they will NOT do the cath. The reason is because where the narrowing is, it would be too risky when it came time for Malach's last heart surgery to remove the stent. There would be a risk of damage to his arterial wall, in having to dig out the stent. So, they have decided to move up Malachi's heart surgery to a year from now, as opposed to two. He will be two years old, instead of three. (The only reason for waiting until he was three was to allow him to grow.) Malachi has an appointment scheduled on January 9th, to discuss the plan, and decide how often they want to see him, to make sure that the narrowing isn't getting too much worse. If it comes down to more narrowing occurring, then they will do a "pre-fontan" cath (this is the cath to see if everything is ready for the Fontan - his last heart surgery.) They will decided if Malachi can wait, or if the surgery needs to be moved up. During his last surgery, they will actually go in and open up his pulmonary artery and graft in artificial tissue to make the artery bigger, and the hope will be that he won't have any more narrowing. (They never say never though.) This surgery also connects his Inferior Vena Cava (the lower artery that brings blood to the heart from the lower part of the body) to his pulmonary artery.

Malachi will never have a "normal" heart. He will always have the hypo-plastic left heart syndrome. These surgeries "buy time" for the heart. It helps take stress off of his single functioning ventricle. It eliminates the stress off of his single ventricle, functioning as two, to not have to pump blood to his lungs, just to his body. There is still a chance of needing a heart transplant someday, and more surgeries, but we will deal with them, if or when they come. All of this has been the constant reminder to us that Malachi is not ours, and that the Lord still has a plan for his life. He truly is a miracle!

We have so much to be thankful for. It was a hard year, but a good year. Even though it has been hard to see our son go through, and continue dealing with so much, we can see the fingerprints of God on his life. Malachi is alive! He is with us! Everyday we have with him is a gift!

So as we begin 2009, we pray once again, that we can somehow be used by our Great God to show His Glory and Love in our lives. Thank you all for your continued prayers and support for our family. The road has been VERY bumpy and hard at times, but I know that my relationship with Father, will forever be changed... for the better. He is real to me more than anything. This Faith we have is real. It is all that matters in this life... this is why we are here... to live for HIM! May all of us live! Live everyday, as they say, in light of Eternity!

Love,
April (for all three)

"I thank Christ Jesus our Lord, who has strengthened me, because He considered me faithful, putting me into service." 1 Timothy 1:12