What Philip is Learning...

A Note from Philip:

I wanted to share with you something that I've been learning recently and a verse that God has given me in the midst of the upcoming challenges with Malachi.
The passage is John 11 and it is the story of when Lazarus dies and Jesus waits 4 days before he travels to see Mary and Martha. They were upset with Jesus for not coming sooner when they thought He could have saved Lazarus, but when Jesus tells Martha to roll the stone away from the tomb, Martha in verse 39 tells Jesus that Lazarus has been dead for four days and stinks! Jesus responds in verse 40, "Jesus said to her, 'Did I not say to you that if you believe, you will see the glory of God?"
When I was reminded of this passage, it really hit me hard. I struggle, often with believing that God is going to continue to work in Malachi's life and that He will bring him through this next surgery... but Jesus reminded me this week that He has promised that if I simply Believe His Word, His promises, then I Will see His Glory! I do understand that that does not mean that everything is going to be wonderful and that we are not going to experience any more suffering... but what it does mean, in accordance with Romans 8:28, that God's power and glory and LOVE will be seen in all things.

We love you and you are always in our prayers!
May God's love be a comfort and strength as you face this new path.

love,
Philip (April and Malachi too)
John 11:40

Surgery Date Scheduled...

Dear All,

Thanks all for the prayers for us and Malachi! We met with the Heart Surgeon, Dr. Philips, yesterday (April 19th). Malachi is scheduled for a pre-fontan Cath on Tuesday, May 25th, and Heart Surgery will be at 8 am the next day, Wednesday, May 26th. (So no sleep for us the night before major surgery!)

Malachi's surgery will involve removing any scar tissue that has developed since the last surgery (which took a long time to remove last time), they will attach his inferior vena cava to his pulmonary artery(this involves using the side of his heart to "build" the artery, and putting in a gortex patch to create a wall for his heart), they will ligate his "blind pouch", they will open up his Pulmonary artery and cut out the stents that were placed in during his prior Caths (it is possible that the Cath doctor will need to come in and put in another stent due to the stenosis (narrowing) of the artery) , 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 building 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.

So our prayer specifics are:

- That Malachi will not get sick at all before surgery.
- Wisdom for all involved: Dr. Philips the Heart Surgeon, Janet the CRNA, Dr. Naguib the Anesthesiologist, and all other techs, nurses, and healthcare professionals. (It helps that Philip has the "inside" on everyone, so we can kind of "request" who we want!)
- Flawlessness of all the machinery and cleanliness of the surgical tools.
- Strength as the day approaches! We are not looking forward to going down this road again!
- A quick recovery and NO infections or complications!!!

I understand it is a lot of confusing information. We have a "drawing" the surgeon did, so we are more than willing to give a detailed walk through, if you are interested.

Also, we are going to be ordering prayer bracelets for Malachi again. We will have them to distribute, but are limited on the supply, so we will be giving them out on a first come first serve basis!

We have been encouraged by so many of you in so many ways. You will never know how thankful we are to have such a loving group of family, friends, and Church Family. Thank you for your willingness to "suffer alongside us!" We are confident that our Great God will continue to take care of Malachi, and we look forward to being through with one of the hardest parts of his journey. We were reading the other evening through his journal and remembering back to the rough start he had. We were encouraged to see how much our Lord has brought him through! We know that He loves him so much and hurts right along side us for Malachi! What an amazing God we serve!

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

Do NOT Fear!

I have been thinking a lot lately about all that we are about to face in the next couple of months. I have to admit I am terrified! In the Bible Study I am doing, "Restore My Heart," there was a quote this week that hit to the core; "To 'lose' your life for Jesus may mean to physically lay down your life for His Kingdom. It may mean that you will be called upon to give up something precious to you..." That quote got to me... I fear that things are going to go badly with Malachi's surgery, and I am afraid that he is going to die...

I know that the Lord has the best possible plan for him, and that He loves him more than I ever could, but sometimes that is so hard to accept. I want my son here with me! I want him to be with me always! I want everything to be a success with his surgery! So I am praying that I will be willing to accept whatever it is the Lord has for Malachi.

I was exhorted by a verse I read in Revelation 2:10, "Do not fear what you are about to suffer..." It goes on to promise that those who overcome will receive the Crown of Life. Honestly, I don't want a Crown of Life, if it means my son has to suffer. I wish I could take on all of his hurt, all of his pain, all of his illness, so he wouldn't have to deal with all of it! It is so much harder to accept the pain of watching your child go through the suffering. The only "hero" the only "faithful one" the only "one to persevere" in all of this is Malachi. He is a true testimony of what it means to stand in the midst of the pain and suffering.

I took a picture the other day of his chest. I was thinking about all the scars his body has, and how many more he will have... Then I thought of my Savior and the fact that His scars will remain when we are all in Heaven with Him... while Malachi's will be gone. Malachi will have a perfect heart, a perfect body, and a perfect life, and my Savior will bear the reminders of all He went through to allow me to have hope that no matter what happens to Malachi, I will see him again. I am also encouraged that this wasn't the way it was supposed to be! Father God had a perfect life planned for us, and sin entered it and tainted it all... death, suffering, sickness, all of it entered the world because of it! How thankful I am that He had a plan in place to counter all of that through the giving of His Son! So for that I am thankful and bow my knee... what a great Savior we serve...

So I guess I am asking for prayer for my weak time! I so covet the prayers! We are so blessed!!! I will take my eyes off of the pain and put them on the One who has overcome the grave! I am confident that He cares for me and I can throw all of my anxiety on HIM! (1 Peter 5:7) I will choose to trust and give Him the fear... and pray that I can see the "joy" in the trial (James 1:2).

Humbled,
April
Phil. 3:13b

Just Because He is THAT Cute!

Here a few cute pictures of Malachi "playing" the piano! We are getting anxious as we are approaching his upcoming heart surgery that isn't scheduled yet. Malachi has a sedated echo scheduled on April 9th, and hopefully soon after we'll get a surgery date scheduled for May. He is walking and talking and growing up! We are so blessed to have him in our lives!

Love,
April

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