We are Home!!!

Malachi was discharged from Children's on December 22, 2007. We got home just in time for Christmas. He is doing really well. We have had to juggle the new life of around the clock meds, continuous feeds, diaper changes, sleeping patterns, and weekly visits to Pittsburgh. We are so thankful to be home. Malachi is much more relaxed and is gaining weight and growing more everyday. We have so much to be thankful for. What a blessing to be home to celebrate our Savior's birth and rejoicing in our son's life and first Christmas at home. Thank you all for your prayers. Thank you for your support. Thank you for your gifts. Thank you for your encouragment. Thank you for your love! Malachi's next surgery will be around three or four months of age. (He just turned two months old on the 2nd!)

We love you all, and rejoice in our great God's provision in so many ways!

Love,
Philip, April, and Malachi

Philippians 4:4

Sorry it has been so long!

We apologize for not updating for quite some time. A LOT has taken place since we last posted. As of now Malachi is doing well. To recap the last several weeks...

Malachi was sent up to the floor the day after Thanksgiving and was doing okay. He was still breathing fast, but we thought it was normal for him. He started on feeds and the staff attempted to try larger feeds at one time. This was too much for Malachi's tummy and he began to spit up and reflux. (He was showing major heaving when spitting up, and he cried after he spit up.) They did an Upper G.I. test (having him swallow barium and seeing if it comes back up.) That test showed that he did have acid reflux. They put in an NJ tube (goes from the nose to the beginning of his small intestine) to help with his reflux. The goal is to get him to gain weight so that he is bigger for his next surgery in two or three months. Everything was going well until his saturations began to drop into the 60's. He eventually was placed back on oxygen to help raise his saturations. Malachi had also become fussy and not consolable for about three days. We were impatiently waiting to go home, wondering why God had kept us here for so long.

He answered our prayers Monday morning, December 10th. I had got out of bed after Malachi had a long night of fussiness. I stood there by his bed trying to comfort him, and prayed that he would feel better. I asked the Lord, "I know you love him, but why are you allowing him to continue to hurt?" (Thinking that he had developed Colic.) I started to cry as he calmed down for about a minute and then he began to cry again. I picked him up and held him in my arms to try once again to console him. I suddenly realized that he felt very warm, his heart rate was very high, and he was breathing very fast. I called for Philip to come over and see what he thought. He took Malachi's temperature and it was 102! We called for the nurse and she came in and took his temp and found it to be the same. We were unwrapping him and getting him undressed to cool him down. I commented about his grunting, thinking he was trying to have a bowel movement. The nurse said that it was a sign of respiratory distress. Just then the surgeon, Dr. Morrell was doing rounds and came in the room. He looked right at Malachi's breathing and said to get him down the CICU. They quickly gathered his things and rushed him down. We thought they would just help his fever and all would be better. When we arrived down stairs the doctor told us that they had decided to intubate him. He said that Malachi was showing signs of what could potentially become a very bad respiratory problem. We were a little shocked, but relieved they had caught things before they got worse. It was determined that his hole between his Atria was beginning to close and was causing blood to back up in his lungs. The solution to try was to take him down to the Cath Lab and punch a hold through the wall.

Tuesday, December 11th, Malachi went in to the Cath Lab for his procedure. Dr. Kritchure (spell?) prayed with us before the procedure. It took about two hours. She came out and told us that Malachi did very well. She said that they used the balloon procedure and it worked very successfully. The hole made a huge difference in the pressures. We also found out that they were concerned about the Pulmonary Band and whether or not it was tight enough. Dr. Wearden (another surgeon) told us that he didn't think that there were any problems with the band. He wanted to avoid taking him back in for surgery.

Now we have graduated back up to the Seventh Floor. Malachi is doing well, except for a few adjustments to his medications. Dr. Wearden told us today that all he is waiting on is for Malachi to gain weight and it looks like we could be going home the end of this week. Please pray that it happens! We would LOVE to be home in time for Christmas.

This part of the journey has taught us a lot. It is so hard to stand back and watch your beautiful baby boy go through so much. To be on so many meds, to be intubated more than once, to have his feet poked to get a reading for his sugar, and to see his reach out to you while all this is taking place. I know that we have asked the Lord why quite a bit. We have read Gene Cunningham's Psalm 119 study and been humbled by the praise that young captive gave to God in the midst of horrible, unthinkable circumstances. We have listened to parts of Gene's study on James and cried through most of it knowing that the Lord was talking right to us. The phrase that always sticks in my mind is: "not asking why, but what." What can we learn from all of this. What is it that the Lord is wanting to teach us. How can we glorify and enjoy (crazy thought!) what He is doing in our lives through this trial. What can we see Him doing through it all. How can we honor and praise our Great God for having a plan for us and being in control. I will not pretend that I sailed through this easily and didn't get extremely mad and very close to just giving up, but one day it just hit me. I can get angry and doubt what God is doing, or I can hold on for the ride and wait it out to see the blessings He has in store. It almost always gets harder before it gets easier, but in the end God shows Himself in amazing ways. I feel honored that He would allow us to go through all of this. That He would give us this opportunity to "pass the test" and be able to present Him with our rewards, and anoint His feet with the tears we have shed. We are not through anything yet, and I think this will be a lifelong journey, but God has never left and always been faithful. May we live our lives proclaiming, as Malachi's name means as: "Messengers of the Lord."

Thank you all for your encouragement and prayers for us. WE SO NEED THEM! We love you all.

Safe in His Arms,
April (for all three!)

James 1

Progress!!!

So it's been a few days since our last update and so many things have happened!

Tuesday the 13th at 0750, Malachi went in for surgery on his heart. Doctor Wearden and Doctor Merrel closed off the PDA and placed the band on his pulmonary artery and the surgery was over by 0940. It went beautifully and Malachi was doing very well. He had a chest tube in for draining of blood and fluid from the area around the heart and he had a new IV that was in his chest called a Broviac line. He looked so good when we got to see him around 1100. So praise the Lord the surgery went great and he was on the road to recovery.
Wednesday the 14th... Malachi was doing well, his oxygen saturation's were in the low 80's where they wanted them and so he was moved toward extubation (getting off of the ventilator). Early afternoon on Wednesday they took him off of the ventilator and just had him on a nasal cannula high flow 30 percent oxygen. As the day progressed Malachi struggled more and more with breathing and keeping his saturation's up. By evening his saturation's were dropping into the 60's so they kept turning up the oxygen he was getting through the nasal cannula until he was up to 70 percent and bearly keep saturations in the low 70's. At this time they got a chest x-ray and discovered that his left lung was partially collapsed which is common in little ones coming off of a ventilator. April and I came back to the house a little discouraged and frustrated that he was having such a hard time. Around 3am the doctor called us to tell us that his entire left lunch was collapsed and so they had to place him back on the ventilator. We immediately took it as a major set back and struggled to keep focus and remember that God was in control. Which of course he was, we just were blinded by our own hopes and longing for a fast recovery.
Thursday morning came around and by 1000 Malachi's lung was back to normal and he was doing much better. Thursday evening they started to wean him off again, but he wasn't doing well at it so they decided to wait another day to give him a rest.
Friday afternoon Malachi was able to come off of the ventilator and he has done very well since. His saturations have been high, in the low 90's but he is on a medication that helps his heart balance blood flow to his lungs and body, so it will just take some time to find the right amount to give him to bring his saturations down. This was good news again since we kept thinking that they would have to go back in to adjust the band around his Pulmonary Artery. They said that readjusting the band would be the last step they take to bring his saturations down.
So... this morning... the 17th. we made our usual phone call after waking up to find out how our precious little man is doing. One of our favorite nurses, Melissa, is caring for him and she told us that Malachi is doing wonderfully! He is breathing great and his saturations are now in the high 80's, which they are continuing to make adjustments to the medications to bring them a little lower. Melissa said she was getting ready to FEED Malachi with a BOTTLE and she said that when we get there we can feed him too!!!!! PRAISE THE LORD!!! He will now be getting real food and maybe put on some weight!!!! This is the best news we've had in the last two weeks!!! We are so thankful that the Lord is healing Malachi and allowing him to be doing so well and now able to eat. WE can't wait to get there today to see him... and... HOLD HIM!!!!! this will be the first time we've held our baby since the moment he was born! God is so good!

Please continue to pray for a good and full recovery. Sometimes I want a fast recovery, but I know that it is better for him to have a good recovery than a fast one. Please pray that his saturations come down some more and they don't have to take him in for surgery to adjust the band. Please pray that he takes the bottle well and is able to catch on to eating, because this is a huge step toward bring him home!!!

Thank you for your prayers. The Lord continues to reveal Himself in new ways everyday and we continue to learn more and more how to trust Him more! Praise God from Whom all blessings flow!

Joyfully His,
Philip, April and Malachi

Malachi Update

Hello...
It's a cold Sunday morning in November, and life here in Pittsburgh is going well considering. Malachi is is hanging out at Children's Hospital flirting with all the women and look sweet as ever with his awesome hair!

Seriously... He is doing fairly well. This past week has been a roller-coaster of emotions for April and I and it's not over yet. Last Tuesday was suppose to be his heart surgery day, but because they found a small bleed in a ventricle of his brain and a small clot in one of the vessels coming off of the ventricle, the surgery was postponed due to the possibility of complications during surgery resulting from movement of the clot or increased bleeding. We were told that the bleed and clot were so small that they would clear up on their own, and it's a fairly common thing for babies to be born with, none the less it was still a little disheartening to hear about. We had to wait until Thursday for a follow up CT Scan to find out if those spots were cleared up, and then we had to wait until Friday afternoon to hear the results of the Scan, but thankfully the Lord chose to reveal Himself to us again, by allowing the clot and bleed to go away! Praise the Lord.

A couple times during the week, Malachi had difficulty breathing and even stopped breathing on three occasions. Thankfully the doctors were right there to get him breathing again, but those times were also very scary for us. Because of his difficulty breathing throughout the week and those times he stopped breathing, the Ear Nose and Throat doctors came in to take a look at this Trachea to see if there were any obstructions that could be causing the problems. Friday evening they discovered a piece of scar tissue that had grown next to Malachi's vocal cords, obstructing half of the windpipe! So, Friday night around 10:15 they took Malachi in for an operation to remove the tissue. The surgery lasted about 35 minutes and went beautifully! Praise the Lord! Malachi is now back on the ventilator while his throat is healing.

As of right now, the surgeons are talking about heart surgery on either Monday or Tuesday of this week. They are making their plans this weekend for exactly what needs to be done, and hopefully we will know today, Sunday, what those plans are. We would like the surgery to be tomorrow just so that it can be done and Malachi can start healing and then get some good food in him sooner. The surgery that needs to be done could include three parts, but may not include all three. The PDA needs to be closed off... it should close on it's own but because it's taking so long to close they may need to just tie it off themselves. The next possible part is the Band being placed on the Pulmonary Artery to restrict blood flow to the lungs even more. The third part is creating a larger opening between the upper two chambers of the heart, the atrium. This last part they haven't really talked about too much, but it is still a possibility. Once the surgery is completed Malachi will be able to breath room air and that is what he needs to do before he can come home!

Thank you for your prayers... Please continue to pray for our little Malachi. He is so adorable and precious, but looks very week and frail right now because of all he has been through this week already. Please pray that the surgeons will be able to make a decision today about the heart surgery and that it will be done tomorrow! Please pray for strength for Malachi, and for us. The Lord has been faithful and we continue to see His plan unfold... but we still have moments of frustration and doubt. Thankfully we realize again that God is in control and His plan for Malachi is beyond anything we can imagine. I am so thankful that I have a relationship with the Lord that allows me to come before Him at any moment and poor out my heart to Him and feel the relief of his peace that surpasses all understanding guard my heart. What amazing Hope we have in Christ! Thank you for your prayers and love!

We will try to update again soon... but the next couple of days may be a little crazy! Enjoy the latest pictures of our Malachi.

Thankfully in His Hands,
Philip, April and Malachi

5 Days Old...

So Malachi turned 5 days old today! He is doing alright. We are awaiting a CT scan for tomorrow to see if the small bleed and small clot have worked themselves out. Also we are awaiting to see what the surgeons are deciding about if and when Malachi needs surgery. He had a little bump in the road yesterday when they took the breathing tube out and Malachi stopped breathing, which we heard later can be common after having a tube in just because their trachea is so small. Either way it terrified me, and I began the spiral downward of asking God why this all is happening. Why Malachi? Why does this beautiful, wonderful, perfect little man have to hurt? Why does he have to go through all of this? I was reminded of the passage when Christ and the disciples meet the blind man in John 9:1-3. (I actually watched a Pastor teach on it the morning Malachi was born.) The question the disciples asked Christ was why this man was born blind. Was it because his parents had sinned? Or because he has sinned? Christ answered 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." I realized that God wanted to use Malachi's life to display God's work in him. And if Philip and I let Him, He would display His work in us too. So I picked myself up off the floor, sang the song, "If you want me to" by Ginny Owens. (Crying the whole time.) And was reminded that the Lord never left and He NEVER will. He will do what is best for our family. As hard as it is to say, WHATEVER that is. Trust me, I let the Lord know my ultimate desire, and I must say that this is the most hardest, worst thing to EVER have to go through in my entire life, but for some reason, the Lord saw that Philip and I could handle it. Either I can fight what the Lord is doing, or I can accept that this is where He has us, and be teachable to what He wants to show us. (Already a lot! Trust for one!) So all this to say, we are under serious attack. Pray that we maintain focus on the Lord, and trust what He is doing. We love you all, and appreciate EVERYTHING you have done for us.

May our lives bring Him glory,
April,(wrote the post), Philip, and Malachi

Malachi's Hair-do

Here are the latest pictures of Malachi. His hair is sweet! Cousin Matthew would be proud!

Malachi Philip Preston has Arrived!!!

Malachi Philip was born Friday November 2nd at 3:04pm and he weighed 5 lbs 2 oz. and was 19 3/4 inches long. April did an incredible job delivering him and we got to hold him for about 10 minutes before the NICU team had to take him.

He is at the Pittsburgh Children's Hospital right now and he is doing well. Monday he has a MRI to look at a questionable spot on the back of his brain that could possibly be blood, and if it is nothing then surgery is planned for Tuesday to place a restricting band around the Pulmonary Artery to help balance blood flow to the lungs and body.

Please pray that the spot on his brain is nothing! and that the surgery is performed to perfection. If all goes well... April will be able to start Thursday or Friday, working at getting him to feed well enough for him to come home with us until his next surgery in 4 to 6 months.

Please please continue to lift Malachi up before our Lord ( and us as well). We KNOW that HE is our strength and the only way that Malachi is going to get through all of this (and us too!). Thank you for your prayers so far and for your continued love and support through all of this.

To God be all Glory forever and ever!

Thankfully in His Hands,
Philip, April and Malachi