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