Labor of Love...

I have been thinking a lot lately about the Birth of our Savior, specifically about Mary. What an incredible responsibility to carry the Son of God, to give birth to Him, and raise Him.

I was listening to Jill Phillips song, “Labor of Love.” It describes the birth of Christ as not an easy one. I started thinking about all that Mary knew about what was to come of her Son. I am sure it was a labor of pain and heartache mixed with joy. Her Baby was finally here, but He would face a tough life. She knew Him coming into this world would bring peace and hope to it, but He would have to die to bring it about.

The scripture passage in Luke 2:8-20 talks about the shepherds coming to honor Christ. When I read verse 19 it struck me, it says, “But Mary treasured all these things, pondering them in her heart.” I looked up the Greek word for “pondering,” it is, “symballo,” which means, “to throw together, to bring together. To bring together in one’s mind, confer with oneself.” I wondered if this was the point that it all hit Mary. She realized all that her Son was going to do, that His mission in life was set.

I thought about when Malachi was born and the bittersweet emotions we all felt on the day he was to be born. We had a general idea of what all he was going to experience, but had no idea the ups and downs the next few months, and even years would hold. I remember being so scared. Scared of being a first time mother, scared of how things were going to go with his birth, and scared of all he was going to face after he was born. I guess in some tiny way I understood a little of Mary’s emotions.

Don’t get me wrong; I in no way am comparing myself to Mary the Mother of Jesus, or Malachi to our Savior. I guess I just thought about how hard that night must have been for Mary, a joyous celebration and a reality of the future. No mother wants their child to experience pain and suffering. Mary knew her Son would face it, and I knew my son would face it.

Then I started thinking about God the Father, Who at any time could’ve called off the whole thing. What was it like for Him? He knew the big picture. He knew what had to be done. His Son’s birth was a bittersweet day for Him too.

I realized that God the Father knew exactly how we felt on the day Malachi was born, and He felt for us. He above anyone else understood what we were feeling. He had been there and was there.

What an incredible God! What a personal God! It reminded me that our lives matter. That Malachi’s life matters to Him.

So as we near the celebration of our Savior’s Birth, lets take time to thank our Great God for being personal, loving, and near. He is the Greatest Father.

“The LORD is near to the brokenhearted. And saves those who are crushed in spirit.” Psalm 34:18

Continuing Details from Surgery...

Here is more entries I posted on Facebook when Malachi has surgery...

Entry for August 27, 2010

Dear All,

I must admit I am feeling a little scared. I am all about knowing what is going to happen, and you think I would be more "used" to things not being as we plan! Today is an okay day. It is an opportunity to trust, if anything, and I can't seem to fully give it all to Him. I know that I should, but there is just one thing I can't let go of, FEAR. (As Bobby Joiner says, "Can't seem to give up the red jelly bean!") So I have been doing a lot of praying to the Lord, knowing that He is in control, but asking Him to help the areas that I don't fully "trust."

I was reminded of the passage in Mark 9:14-29 where the father comes to Christ to ask Him to heal his son that had the demon. It is so sad! The father is so distraught because the demon is causing convulsions so bad that it almost kills his son! The amount of suffering this father has had to watch literally makes me cry! He asked Jesus "If You can..." I love how Jesus replies, "'If You can? All things are possible to him who believes!" My paraphrase... "If I can? Seriously? You are asking the Son of God, if HE can?! Everything is possible for believers with ME!" Then the father cries out, "I do believe; help my unbelief!" I completely understand the father's reply! I do trust Him, I do believe, but I need help letting go of my fear!

Malachi's lactase numbers came back higher than normal, but not too high. So really the plan is to watch him and see if he gets "worse." Which might tell them that Malachi's heart is not functioning properly. That in itself is scary, because it could mean anything, poor heart function, with the way it beats, is it failing???? So other questions arise, does he need a pace maker? Does he need a heart transplant??? None of those things have been indicated, but those things are always in the back of my mind! (I even just spoke to the surgeon about it, and he said that it is not what is going on!) I feel that the numbers were "weird" and not clear, because I had some more trusting I needed to do! This test was not over for me!

Thankfully though, as I have been writing this, some answers have been given, and hope is more clear. My trust better. Malachi does look good and hopefully, if things continue to improve, he will go upstairs tomorrow!!!!!! Thanks again for the prayers!

Learning more all the time!!!!!!
April for all
Mark 9:22-24

Entry for August 29, 2010

Dear All,

I wanted to write and thank everyone again for the prayers, gifts, and encouragement for our family! We have been so well taken care of, it is unbelievable! You think I would see God's provision in the "small" stuff and trust a little better in the "big" stuff. This journey has been a long and trying one, and we are so thankful for all who have prayed so faithfully for us and Malachi.

We are cautiously optimistic, as everyday is unknown, and unsure. Today Malachi's labs showed that his lactate was down to normal, 1.2, which is great! We were happy to hear that news, but also found out that his white blood cell count is still up, even from yesterday. They are a little concerned because Malachi has been on an antibiotic to treat his C. Diff. for about 24 hours, and he is still showing a spike. They said for now they are going to watch things and check them again in the morning.

The Cardiologist, Dr. Hoffman, told us today they are watching things with Malachi closely. He said that the team is a little concerned with his saturations being so low. He said that in the back of their minds, they are wondering if it could be possible that Malachi is not adjusting to his Fontan operation as he should be. There are several factors that could be possible, so they are looking into possibly doing a C-T Scan, or even another Heart Cath. He said that they are just waiting to see if he "adjusts." So we are praying for complete wisdom for all the doctors and staff treating him.

Malachi is playing a little, but not "acting" quite like Malachi yet. Philip reminded me that he just needs time to heal and adjust. Please pray for strength for him and us, as we are all very tired and unsure of all this information. I know the Lord is in control and holds all our tomorrows. I am choosing to trust!

Thanks all for the prayers!

Weary, tired, and worn,
April for all
Phil. 4:13

Update for August 30, 2010

Dear All,

Thanks again for the prayers for Malachi. Today has been a good day. Malachi is starting to act more like himself. He was playing today and interacting more. He still gets tired and winded, but it is nice to see him more like Malachi.

We have two sides looking at Malachi's low oxygen saturation levels. The surgeon seems to think that his saturations are lower due to his hematocrit (blood count) being low. The Cardiologist on C5 wonders if there is a problem with his pulmonary artery, causing his sats to be lower. They both agreed on an Echocardiogram today, and the results showed that Malachi's heart function is good, there is no problem with his heart valve, and the Fontan connection is open and free flowing. The picture they wanted to get was an image of his pulmonary profusion, but Malachi's positioning and the scar tissue from surgery make the image unclear. So there is a possibility of a CT scan in the next day or so to check things out.

The plan for tonight is to watch Malachi's oxygen saturations on and off of oxygen and get an idea what he does, check his blood counts in the morning, and see what they show and decide on what steps to take next. It is our understanding that Malachi's Cardiologist will be rotating through C5 starting on Wednesday, and he knows him well and is not so much a "number" person, so we are praying and hoping that he will have a little more insight on to what is going on.

Overall things look pretty good. The sleep issue is still a BIG problem, as Malachi has not slept well, and this has caused his parents to not sleep well! So we are praying a big prayer of sleep tonight!!!!!!

Thanks again for all the prayers! Hoping for more answers tomorrow!

Love,
April for all
Phil. 4:13

Entry for August 31, 2010

Dear All,

Tomorrow will be our two week mark of time in the hospital with Malachi. Things are pretty tiring, with no sleep, but I keep reminding myself of parents who spend months and months, even close to a year here! We did overhear the doctor mention this morning about an antibiotic he is on and said, "he can go home on that." That timeframe is a week away, so we might be getting close to going home????

Malachi's white blood cell count has come back down to normal, and his tests did come back positive for C. Diff. (the horrible diarrhea), so they will continue the treatment on the antibiotic for 10 days. He is already doing better with it. His sodium and potassium levels have been lower, due to all the lasix they have him on, so they have switched him to the oral kind, instead of the iv kind, due to the iv causing more loss of electrolytes. He is off the oxygen, but is still showing lower oxygen saturations, so the doctors are looking into reasons why. One thought is that it might have something to do with where his Pulmonary Artery was rebuilt, so they are scheduling him for a CT Scan on Thursday, September 2nd. Depending on what those tests show, there might be another Heart Cath scheduled to look further into things.

Malachi's Cardiologist, Dr. Teske, starts his Attending rotation tomorrow on the floor. We are quite happy, because he knows Malachi well, and is very knowledgeable. We know that he could have the same opinions as the other Cardiologists, but we like the idea of "fresh eyes," and a little more familiarity. We will see what he says in the morning. We are praying for new insight and wisdom from our Lord to guide the thoughts and actions of all.

A praise though, is that Malachi is acting more and more like himself everyday! He is gaining more strength and is playing more. He still gets pretty tired, but part of it is recovery and not sleeping well here. Sleep is our continued prayer request! We did sleep a little better last night, but really want all of us to be able to rest well.

Thanks again for all that has been offered on our behalf! Our Lord is incredible! I can say without a doubt that He has proved Himself faithful ALL THE TIME! There are weary and worrying times, but His LOVE and TRUTH have been the stability and reminder that He is in control! I still desire for Malachi to be 100% better, and I have to constantly give over my tomorrows and not worry about them to God my Father.

One thing I was reminded of, was a testimony I watched from parents who had lost their baby girl just four hours after her birth. Her mother had carried her knowing that she wasn't going to live very long. One thing the mother talked about was how her relationship with God had changed, in that she was more honest with Him, and told Him how she truly felt. She said that some of the time she was angry and asking why, and others deep sadness, but she said, "He can handle it. He's God!" I loved that! She wasn't surprising Him with her words, she was being real in her struggle. I hope that my "realness" and transparency haven't "shaken" anyones' faith, but I guess I want to be honest with how I really feel. I don't feel strong all the time, I don't trust all the time, and I certainly don't "quote the perfect verse" in times of need! Where I am now, is much better than I was in my Christian walk, right after Malachi was born. I have learned more about my Lord than I ever would've! I can read passages of scripture where godly people cried out and understand their feelings. I appreciate and even look for passages where people are desperate for the Lord to do something... Because I am desperate!

Anyway, all that to say, I have a long way to go, but have learned a lot too! Thanks again to all who "put up" with my groaning! God is truly good all the time! I am so glad to know that He never changes! I need that stability in my Lord!

Learning more all the time,
April for all
1 Peter 5:7

Entry for September 2, 2010

Dear All,

WE ARE GOING HOME!!!!!! It is so great to be able to say it! Malachi's CT Scan showed that his pulmonary artery branching is smaller than normal, but not small enough for any intervention (I.e. Cath, etc..). Dr. Teske, the Cardiologist, said that Malachi's oxygen saturations will increase as he adjusts to the vasodilator medication he was put on in the CICU. This medication takes about 6 weeks to fully work.

Dr. Teske said that there is no reason to keep us here any longer while waiting for the medication and Malachi to adjust to the changes. We will see him back in a few weeks to check on Malachi's status.

We are going home with some oxygen. Malachi had a little dip in his saturations last night, and just needed a little help, as we think he is dealing with allergies. Dr. Teske said we can put the oxygen on while he is napping and sleeping just to give him an extra help. He said that when Malachi doesn't need it anymore, he will take it off himself.

We are going home with some sense of relief, but kinda wishing Malachi's saturations were a little better. We are thankful that we are close enough to the hospital if we need anything, and Dr. Teske is available for any questions or concerns we have. Praying and hoping that he will continue to adjust to the changes in his body, get stronger, and keep improving everyday.

Thanks again for the prayers! We are so blessed to have so many people praying and lifting us up! God is good and He NEVER fails!

Love and hugs,
April for all
Romans 8:28

Entry for September 4, 2010

Dear All,

I hope the spacing out of the updates, shows that we are pretty busy now that we are home! I am so glad and so thankful we are home, but Malachi is still in need of prayer everyday. He was sent home with oxygen to use at our discretion. If we think he is looking "blue" or is a bit irritable we can use it. He is also on some new meds he wasn't on before, and so we are having to learn a new routine with them. It was very overwhelming at first, but we are getting into a routine and schedule.

We go back on September 14th to see Malachi's Cardiologist. He will check out Malachi's progress. We are praying that Malachi will be adjusting more to his medication, his Pulmonary Artery has opened up more, and his oxygen saturations will be what they should be.

All this to say that we are not where we wanted to be exactly at this point, but at least we are able to have him recover at home. Please keep the prayers coming. We are not completely ready to say that things are "final." A lot of waiting and seeing....

Thanks again for the continued prayers. We love you all and know that your faithful prayers have helped Malachi's recovery go a lot smoother than otherwise! The proof is in James 5:16b!!!!

Love and hugs,
April for all

Update for September 14, 2010

Dear All,

Today was Malachi's follow up appointment with his Cardiologist. All went well. He had a chest xray that showed that his lungs and heart look good. His oxygen saturations are still on the low side, but should continue to improve with time. We will see the Cardiologist in four months. Until then, we will keep the oxygen for two more weeks, and if we don't need to use it, we can get rid of it. We will use up the rest of his one diarrhetic, and discontinue the lasix in 3 in a half to 4 months. The goal is to eventually only have him on his blood pressure medicine and a baby aspirin. Yippee for us! LESS MEDS IS GREAT!

The Cardiologist said that he looks good. We are happy with that! He is getting better everyday and we are so thankful for all that the Lord has brought him through. We too can't thank our family, friends, and Church family enough for all the support in many ways! You all have been such a blessing to our family!

Praises to the One Who is Worthy,
April for all
Romans 8:28

Entry September 20, 2010

Dear All,

Thanks again for the continued prayers for Malachi! We appreciate the continued prayers.

Today we took Malachi in to see the Surgeon due to noticing his pacer wires just under the surface of the skin. We were told we will need to keep an eye on them, because they could eventually grow out through the skin, and that could cause them to erode. Everything with that is okay for now, but it allowed them to get a good look at him.

Yesterday afternoon he seemed like he was getting sick with a cold. This morning he woke up and had a very raspy cough. We took him in, and the surgical staff did a full check of him and told us that they are wondering if he might be developing some fluid around his lung. (Due to seeing some fluid on his chest xray done last Tuesday, and noticing his puffy eyelids.) They did a full electrolyte blood draw and hematocrit count. They told us that if anything was abnormal they would call. (They haven't called, so we are guessing everything is alright.) One positive note was that his oxygen saturations are higher then even a week ago! They want us to bring him back in Wednesday to get a chest xray done, and a recheck how he looks.

Please pray that he will heal of his cold and things will look good Wednesday with the chest xray and visit. Thanks so much! Again we love you all and are so blessed to have had so many people lifting up our family in prayer!

God is good regardless of our circumstances!

Love,
April for all

Romans 8:28

Its Been a While!

I wanted to post a few of the details from when Malachi had his surgery August 19th, 2010. Here are some of the notes I posted on Facebook:

Entry on August 20, 2010

Dear All,

Last night was a little bit of a rough night for Malachi. He had developed some fluid in his chest cavity. They had to insert a chest tube in to drain out some of the extra fluid. I was awakened last night about 2 am, and felt led to pray for him, and found out that it was about the time they were putting in the chest tube. God is amazing!!!

We arrived at about 9 am this morning and he was doing better. He has drained off most of the fluid and his lungs look better as well, from what they saw on his chest x-ray. Dr. Philips came by and told us that his numbers look good, and as expected. The main focus is to get his pain under control, balancing the pain management with his breathing. The pain meds have an effect on lowering your blood pressure and slowing your breathing, so it makes the heart and the profusion of blood a little slower. They need to have his heart rate up and his breathing deeper, but they also need to balance keeping his pain under control. It is a very fine line with close monitoring.

The plan for today is to keep him comfortable, starting him on some foods, getting his oxygen saturations and blood pressure higher, and the drainage of the fluid from his chest cavity and lungs.

I was praying this morning for him and my mind went to the following verse in Psalm 121. I have to remember that this is a marathon, not a sprint, and that we are going to have up days and down days. I thought about how we are in the valley looking up at the mountain. It is so hard to see Malachi in pain and upset, but I try to remember that the end result will be better for him in the long run. I also love that this verse talks about the Lord not slumbering! We were so tired last night, and continue to be, but our Great God was awake all night with Malachi keeping watch and protecting him.

Thanks again for the prayers and support. We are so blessed!

Love to all, April for all

Psalms 121:1-8 "I will lift up my eyes to the mountains; From where shall my help come? My help comes from the LORD, Who made heaven and earth. He will not allow your foot to slip; He who keeps you will not slumber. Behold, He who keeps Israel Will neither slumber nor sleep. The LORD is your keeper; The LORD is your shade on your right hand. The sun will not smite you by day, Nor the moon by night. The LORD will protect you from all evil; He will keep your soul. The LORD will guard your going out and your coming in From this time forth and forever."

Entry on August 21, 2010

Dear All,

I am writing to you very encouraged this morning! Malachi is doing much better than yesterday. We had an up and down day yesterday, as Malachi's breathing was pretty shallow (about 12 bpm) and his oxygen sats were in the high 50s - low 60s. The Doctors were trying to get a balance of pain meds with getting his breathing under control. The narcotic pain meds mess with his respiratory function, and so it was making his sats lower. They adjusted his pain meds as well as his sedation to help with the pain and respirations.

As of last night when we left he was doing better, but still not great. Overnight he was waking up a little upset, but was breathing better and satting better.

When we arrived this morning he was pretty upset (more so with being in bed, than pain), but satting more in the high 70s low 80s and his respiratory rate had increased to about 20 bpm! All of his levels are normal, except for being a little on his potassium. His chest xray showed that his chest cavity is draining off the fluid, and his lungs are a little fluidy, but getting better.

The plans for today are getting him back on his feeds, weaning him off of the nitrous oxide, taking out one of his chest tubes (two will still remain), and giving him something to help him go "number two" :o), (he has actually had a lot of discomfort from that, and is why we were up all night before his surgery!). Today seems much more hopeful and Malachi is doing well, for just having major heart surgery TWO DAYS AGO!

Thanks all for the prayers and encouragement offered to us! We are so blessed to have so many friends, family, and Church Family to surround us! Praying for a better day today! So far so good!

Love and thanks, April for all Psalm 56:3-4

Entry on August 23, 2010

Dear All,

I wanted to ask for specific prayers today. (I hope I am not sending out too many updates!) Malachi is desatting again... (70 - 72%). He is doing well, but the doctors are trying to figure out why his oxygen saturations are so low. They are putting Malachi on a med that helps to dilate the vessels in his lungs. The doctors think that he might have too much pressure in his lungs, so the blood is shunting out through the fenestration (hole) that they put in between the vessel and his heart. Which basically means that he is not pumping enough blood to his lungs. They are also weaning him off the oxygen. He is also getting an echo done to check on heart function.

He is doing well, considering, and honestly has such a great attitude. He is such an example of "being content in any circumstance!" Everyday is up and down, we are not dealing with major ups and downs like in the beginning of his life, but are still on the emotional roller coaster. We are getting good sleep, but still end up feeling completely exhausted at the end of the day. We are relying on the Lord for our strength! (Phil. 4:13)

I don't want to be a person who sounds like we "have it all together, quoting all the 'spiritually mature' phrases." In all honesty I would rather not have my Son in the hospital dealing with heart issues, but that is the path that was chosen for us, and Malachi was formed the way he was by God. (Psalm 139:14) I take comfort in the fact that My God loves us, and loves Malachi more than I ever could. I truly believe that now. If you would've asked me two and half a years ago when this journey began, I don't think I really believed it. I had a lot to learn about My Creator, outside of the "classroom." It was truly living out and experiencing the hard things in life, that made my relationship with Him that much more stronger. I used to get pretty upset at the circumstances, but are realizing more and more that it wasn't supposed to be this way. OUR SIN ruined everything, and God my Father, is with us all the way! ( Hebrews 13:5b) So I am trying to trust more and more and take things one day at a time. (Matthew 6:34) As I had said before, Malachi and Philip truly are the heroes in all of this. They have been an example to me of persevering!

Thanks again for the prayers. We are confident that all will work for the Lord's good, whatever that may be, and as hard as that is to trust sometimes! (Rom. 8:28)

Love, April for all

Entry for August 24, 2010

Dear All,

Things are good. Malachi is down to needing about 40% oxygen and 2 liters of flow. (Improvements!!) He is also been weaned off of his millrinone (iv blood pressure med) and they are weaning down his sedation meds. So he is a lot more awake and alert. He is playing, but still gets pretty tired.

The two biggest requests I have for today is; prayer that the Lord will help rid his pleura space around his lungs of the fluid. (This is why he still has the chest tubes in, and they cause a great deal of discomfort!) The doctor told us it could take up to two weeks for the fluid to completely drain!

The second is for the panic attacks Malachi has on occasion. It is very scary and overwhelming. I don't help because he senses my fear and gets even more panicked. (I had a good cry about it last night!) Pray that the Lord will calm him and that he will relax and breathe deeply... his oxygen saturations get very low and it takes him time to recover!

Philip and I are holding up pretty well. We both go back and forth each day on the headaches. (We are both prone to them.) I had my first migraine last night, and am praying Philip doesn't end up with one! I did get a massage they provide for the parents in the hospital, and that helped a lot! We appreciate all added prayer for strength. We were definitely expecting a long haul, but (I) forgot about the weariness and drain with the emotional roller coaster. We are trusting and hoping Malachi's health will be completely restored.

Thanks again for all the prayers and encouragement! We love you all!

Love, April for all

Isaiah 40:31!!!!!!! The waiting on and in Him brings about the strength!

Entry for August 25, 2010

Dear All,

Sorry I took so long to get this out. Today has been a little tiring. Yesterday evening into last night was filled with vomiting and a sleepless night! Malachi was started back on his milrinone yesterday evening, due to showing signs of problems with his cardiac output. (Low heart function.) When the heart has low cardiac output the heart starts to only pump blood to the "important organs" i.e. lungs, brain, etc... The stomach and intestines tend to be the low end of the output. (So began the vomiting.) They did a blood test to determine if that was going on, it was. The milrinone helps with the heart function, and the doctors seem to think that the weaning of the med so quickly actually didn't give his heart time to adjust. So they are "starting over" so to speak.

The surgeon and the other doctors said that Malachi looks good. His numbers and breathing all are where they should be. The chest tubes are also draining way less fluid, and the surgeon said that if he puts out less than 30 ccs in a 24 hour period, the chest tubes will come out. He also said that it will allow Malachi to breathe a little easier and his oxygen saturations will improve.

We also found that the fenestration (hole) that was put in during surgery, has actually kept Malachi from being a lot worse. If he didn't have the fenestration the blood would not be going into the heart to keep the blood circulating, so he would be very sick! We are thankful that the Lord gave Dr. Philips the wisdom to put in the fenestration so that Malachi would not be worse!

So prayers for tonight are that Malachi will SLEEP! He has been so exhausted all day! He just needs to get some good rest, and so do Philip and I! We are staying in a parent room tonight at the hospital, so we will be just down the hall if Malachi needs us! Pray he doesn't and just sleeps!

He is getting there, health-wise. He is still pretty weak and unhappy to be in the CTICU, but is improving! Malachi has always moved along at his own pace, so we figured this would be a long haul. We are thankful that things are looking pretty good considering.

We are also so thankful for all the meals, prayers, gifts, phone calls, emails, hugs, and love! We are so blessed!!!!!!! It is so hard to express how truly thankful we are! Everyone has done so much for us in so many ways! Thank you!!! Thank you!!!!

Trusting and resting in His arms,
April for all
Proverbs 3:5-6

Entry for August 26, 2010

Dear All,

We have a praise!!! I need to remember when things are good! Malachi got his last two remaining chest tubes out today! He seemed to breathe a little easier. He was playing, but is still pretty tired. He only sleeps in increments of 20 minutes. So that is a request for him, that he will sleep!!!!

The discouraging news was what the surgeon, Dr. Philips told us was possible. He did say that Malachi looks good and he is where they expect him to be. They will try weaning him again off of the Milrinone tomorrow (Friday, August 27th). We are hoping and praying that his heart will adjust to the change and his lactate will stay normal and the heart will function properly. The problem is that Malachi's oxygen saturations are very low (high 60s - low 70s, where they want him more like mid 80s to low 90s). Dr. Philips said that if Malachi's oxygen saturations don't improve that they will have to take him back to the Cath lab and close his fenestration (the hole), due to it causing the blood to direct back into the heart, instead of his lungs. So a BIG REQUEST is that coming off the Milrinone will cause two things, that his heart function will stay good, and that it will allow the pressure in his heart to go up, and the pressure in his lungs to go down. (So the blood will shunt the right direction.)

It is a lot of unknowns and uncertainty, but we do know that God is in control, and holding all our tomorrows. I do pray His will be done, but I am not afraid to tell Him, in detail, what I would love to happen! He does know what is best, and still listens to my groaning!

Thanks to all of you who have stood with us and by us thru all of this trial! We know that Malachi's life has been used by our Lord in so many ways! We are so blessed and honored that we get to be his parents! He is such an amazing kid! Love and hugs to you all with every bit of our being!

Trusting and Hoping,
April for all


Psalm 34:18 - "The LORD is near to the brokenhearted (Malachi and us!). And saves those who are crushed in spirit."

Promises...

James 1:17 says, "Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow."

I was reminded of this promise this past week. Everything God does is good, perfect in fact! As hard as it is for us to have to watch Malachi suffer there is "good" in it. Our faith is being strengthened and we are completely tied into prayer communication with our Heavenly Father. We are "blessed" because of all we are learning about our Savior, and our relationship with Him is on a level that some may never get to experience. I just wish there was some other way of growth for us than seeing our precious boy go through so much!

When Malachi's surgeries have been delayed the past two times I was pretty disappointed. I wanted to just "get it over with!" I realized though, that the Lord, if not for any other reason, was planning to teach me so much more about Him and myself, before we faced this next part of our journey. I am unsure of what will happen, but I am praying that I can learn all that is set before me to learn. I want to see my Savior at work in our lives and trust Him completely. I feel a little better "prepared" as we go into it.

Another promise I was given this past week was in none other than the book of Malachi, chapter 3. Malachi 3:3 says,"He will sit as a smelter and purifier of silver, and He will purify the sons of Levi and refine them like gold and silver, so that they may present to the LORD offerings in righteousness." It was a reminder of all that the Lord has been doing in and through Malachi's journey. I was encouraged though that the chapter didn't just end with that, it goes on later in chapter 3:10 to say, "Bring the whole tithe into the storehouse, so that there may be food in My house, and test Me now in this," says the LORD of hosts, "if I will not open for you the windows of heaven and pour out for you a blessing until it overflows." I know that this chapter and book are geared towards the nation of Israel, but I felt He was directing it towards me. (The Bible is applicable to all aspects of my life too!) I felt that He was promising us the blessings to come after the purification. What a whole different perspective! To see the suffering as a blessing, because of all that we would learn from it. That is why James 1:2-3 says," Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance." We have (if I had my eyes open to see) the opportunity to grow in ways that no one else may ever get to experience. We have a relationship with God that we wouldn't have otherwise had without the hard times. That is probably why I am drawn to people who have been through loss and major heartache (not saying that anyones' suffering is worthy of more recognition than others) I just relate to those who have a similar experience better!

I feel I am rambling, but wanted to end with the lyrics to this song by Jeremy Camp. (Also another reminder and promise this past week!) He lost his wife to ovarian cancer at just 22 years old. He wrote this song after that, and I know this will become a song that comes to mind when faced with Malachi's upcoming surgery. I HOPE and PRAY that we can echo these words!

I Still Believe by Jeremy Camp

Scattered words and empty thoughts
Seem to pour from my heart
I've never felt so torn before
Seems I don't know where to start
But its now that I feel your grace fall like rain
From every fingertip washing away my pain

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don't see, I still believe

Though the questions still fog up my mind
With promises I still seem to bear
Even when answers slowly unwind
It's my heart I see you prepare
But its now, that I feel, your grace fall like rain
From every fingertip washing away my pain

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don't see, I still believe

Well the only place I can go is into your arms
Where I throw to you my feeble prayers well in brokenness
I can see that this was your will for me
Help me to know that you are near

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don't see, I still believe

Surgery is just two weeks from this Thursday, on August 19th. We are praying for a sucessful surgery without any "bumps" in the road! Thanks to everyone who prays and thinks of us often! Love and hugs!

Love,
April for all

More Lessons from a Precious Life...

"And they were bringing even their babies to Him so that He would touch them, but when the disciples saw it, they began rebuking them. But Jesus called for them, saying, "Permit the children to come to Me, and do not hinder them, for the kingdom of God belongs to such as these. "Truly I say to you, whoever does not receive the kingdom of God like a child will not enter it at all." Luke 18:15-17

I have prayed so many times for healing for Malachi in so many ways. I have prayed for healing of his heart, for healing of his reflux, for healing of his vision problems, and healing of his scoliosis. I pray it so much the words come out without even thinking. As I read these verses I was struck by the part in verse 15, "Bringing even their babies to Him so that he would touch them." It made me think of their desperation and trying with everything in them to have the Lord touch their babies so they would be healed by Him. What kind of babies were they? Heart Babies? Premies? Babies with Digestive Disorders? Babies with Neurological problems? Babies with Down syndrome? Whatever "type" of babies they were, these families were desperate for healing for them.

I have been lead to several blogs of families dealing with the same type of heart condition that Malachi has, Hypoplastic Left Heart Syndrome Many stories are very sad and reminders of what we went through and causes me to count my blessings! Either way we are all in the "same boat" so to speak. We are all praying for a miracle and hoping for the least amount of pain for our children. I was convicted in reading this passage to have a more passionate prayer life for Malachi, in everything! I have always been passionate in praying for his heart, but I should be in all aspects of his life... his Salvation, his future wife, his reflux, his vision, his scoliosis! No matter how great (Salvation) or how small (reflux) they may seem!

I was also struck wondering about the "type" of child he told the disciples to let come to him. Christ said, "The Kingdom of God belongs to such as these." What did He mean? That these sick children were meant to exist because of how He would use their lives? I am brought back to the passage of the man born blind in John 9:1-7. The disciples asked Christ why this man was born blind, and they offered their reasons, and Christ responded with,"It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him." This verse was given to me on the morning of Malachi's birth from the Lord. It brought great comfort in knowing that the Lord was going to use Malachi's life to display the works of God in it. I feel that Christ was using the examples of these "sick" kids to display the works of the Father through Christ. When I look at our situation and every other person that has had to suffer watching their precious children go through so much, it is humbling to me, to be chosen to raise and care for such a life that the Lord WANTS to use to display His mighty works! I feel completely unworthy, but I am so thankful for this honor. I am amazed to think about how many people in Heaven will receive a jewel for their crown based on their faithful prayers for Malachi.

Malachi's life has taught me so much! My relationship with our Great God will never be the same. I know Him so much more personally. I NEED Him everyday, and every hour! I don't wish suffering on anyone, but I know the suffering we have experienced has taught me so much that I would've missed out on otherwise! (It would've been nice to learn another way tho!)

Malachi's Cath and surgery have been rescheduled due to an onset of a cold. He will be having his heart Cath on Wednesday, August 18th, and open heart surgery on Thursday, August 19th. Once again, we petition prayers from all and are so thankful for everyones' faithfulness! We love you all and are so blessed to know all of you!

Learning more and more everyday,
April for all

The Week Ahead...

Dear All,

So I sat down to write a note to post on Facebook and I hear my little man trying to sing the alphabet with a toy and it brought tears to my eyes. It is so hard to comprehend the thought of him being sedated and unconscious again. Especially now that he is growing up in so many ways.

Malachi has taught me so many lessons along this journey. I know that he has never known life feeling 100% great, but what a testimony of someone who perseveres under trials! There have been so many times that I have gotten upset or frustrated, and he calmly takes all of his “issues” with patience. He cries when he hurts, and he “deals” when he needs to. There are other times where I have sobbed crying, and he will come over and comfort me, lifting up my face and kissing my cheek. He is such an amazing kid!

The Truth I know is that Our Lord will be our strength, that He will help us, and that He is with us… Isaiah 41:10. I know that He wants us to cast all anxiety on Him, and He cares for us…. 1 Peter 5:6-7. I am praying that we will remember this when things get hard and I question if He really is there. I pray that this time, I can learn all that I can. I pray that I can go through the fire and come out better than before. I want to deepen my relationship with My Savior! I want to be able to lay my crowns at His feet and be pleasing in this!

All of you who have prayed for Malachi and us, and have offered encouragement will never know the blessing you have been to us! We are so thankful for so many who have stood “in the gap” with us! We love you all!

Anyone is more than welcome to visit Malachi while he is the hospital. We would welcome it! (No child under 12 years old is permitted in the hospital.)

His Cath is scheduled at 8 am on Thursday, June 24th and will last 4 hours. Surgery is Friday, June 25th at 8 am, and is scheduled for 8 – 9 hours.

We look forward to being through this valley soon and testifying about our Lord’s deliverance and healing of Malachi! We love you all!

Trusting (at least for today ☺),
April for all

Proverbs 3:5-6

Surgery Date Rescheduled...

Dear All,

I wanted to write and let you all know that Malachi's surgery date has been rescheduled. He has come down with a respiratory infection. The surgeon does not want to risk any serious problems with surgery due to the infection. His heart cath will now be scheduled for June 24th and surgery will be June 25th. It is now a six week LONG wait and attempt to keep him healthy. Please pray he makes it to this date without any colds or infections. We are disappointed, but are thankful for wisdom for the surgeon in waiting on what is best for Malachi.

Thank you all for your prayers for Malachi and our family. We are anxiously awaiting the date, but are confident in Our Lord to see Malachi through once again.

Love and Hugs,
April for all

Jeremiah 29:11

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