Christmas 2008...
Looking back on 2008 there was quite a bit that happened! We took Malachi home just before Christmas 2007 and got to spend New Years at home as well. Over the next month we were back and forth to Pittsburgh, with accidentally pulled out feeding tubes, heavy breathing, and appointments. We got re-admitted to the hospital on January 22nd, 2008. We remained in Pittsburgh until Malachi's next surgery, the Glenn, on February 22nd, 2008. That was the worst thing to have to see him go through, so far. He was so swollen from the surgery, and was on a pacemaker. I really thought, he was going to end up needing a heart transplant. His recovery was horrible. He experienced the worst migraine headache over the next two weeks after the surgery. We took him home on March 1st, 2008. He was still experiencing the migraines, and it was such a hard thing to have to watch him deal with. He would sleep, and then wake up and cry from the pain. He had very sporadic times of peace. We went back to Pittsburgh for a visit and once again got admitted to the hospital with low oxygen saturations on March 12th, 2008. They determined that Malachi was going to need the heart cath, to fix the narrowing in his pulmonary artery. We had Malachi moved to Columbus on March 19, 2008 after lots of prayer, and the open door with Philip getting a job at the children's hospital. We remained in the hospital in Columbus, until Malachi had his G-Tube surgery (feeding tube placement) on March 31st. We then went home on April 4th. Malachi then had his heart cath to fix the narrowing in his pulmonary artery, on June 2nd. That cath revealed a lot about his heart. The cath went well, and they were able to put in a stent to temporarily fix the narrowing. We went home the following day, and only had check-ups and normal baby stuff to deal with... along with his never ending reflux issues.
I can't say that every test, every trial, every heartache we experienced along the way was a "good" growing experience. I think most of the time I failed at learning what the Lord was trying to teach me. I did however, finally understand what Job meant when he said, "So that my soul would choose suffocation, Death rather than my pains." Job 7:15... my paraphrase, "I would rather die, than deal with all of this "stuff." It got to a point with me that I wanted the Lord to just take us home, and Malachi wouldn't have to suffer anymore. I still ask the Lord why He has chosen to allow Malachi to go through so much, and continues to go through so much. I know I may never get an answer, but I am going to keep asking. I keep asking the Lord to heal Malachi's reflux problems, and I know that He may never choose to heal him, but I am going to keep asking. Maybe He'll be like the Judge in Luke 18:1 - 8. It talks about the widow who kept going to the Judge asking for protection, and because she kept asking, he finally answered her request. It goes on to mention that Our Heavenly Father will hear the requests of the righteous, but the end is very sad... will He really find that there was faith (to believe He would answer) once He has answered. It is such a great passage. Gene Cunningham referenced this passage while going through the James study. I have often reminded myself of it.
Now it is 2009 and so much awaits us. We found out just before Christmas that Malachi has even more narrowing in his pulmonary artery. There was talk of a cath in Mid-January, but now we have received a different plan. Dr. Teske, the Cardiologist, met with Dr. Phillips, the heart surgeon, and Dr. Cheatham, the Cath doctor, to discuss the best plan for Malachi. They determined that they will NOT do the cath. The reason is because where the narrowing is, it would be too risky when it came time for Malach's last heart surgery to remove the stent. There would be a risk of damage to his arterial wall, in having to dig out the stent. So, they have decided to move up Malachi's heart surgery to a year from now, as opposed to two. He will be two years old, instead of three. (The only reason for waiting until he was three was to allow him to grow.) Malachi has an appointment scheduled on January 9th, to discuss the plan, and decide how often they want to see him, to make sure that the narrowing isn't getting too much worse. If it comes down to more narrowing occurring, then they will do a "pre-fontan" cath (this is the cath to see if everything is ready for the Fontan - his last heart surgery.) They will decided if Malachi can wait, or if the surgery needs to be moved up. During his last surgery, they will actually go in and open up his pulmonary artery and graft in artificial tissue to make the artery bigger, and the hope will be that he won't have any more narrowing. (They never say never though.) This surgery also connects his Inferior Vena Cava (the lower artery that brings blood to the heart from the lower part of the body) to his pulmonary artery.
Malachi will never have a "normal" heart. He will always have the hypo-plastic left heart syndrome. These surgeries "buy time" for the heart. It helps take stress off of his single functioning ventricle. It eliminates the stress off of his single ventricle, functioning as two, to not have to pump blood to his lungs, just to his body. There is still a chance of needing a heart transplant someday, and more surgeries, but we will deal with them, if or when they come. All of this has been the constant reminder to us that Malachi is not ours, and that the Lord still has a plan for his life. He truly is a miracle!
We have so much to be thankful for. It was a hard year, but a good year. Even though it has been hard to see our son go through, and continue dealing with so much, we can see the fingerprints of God on his life. Malachi is alive! He is with us! Everyday we have with him is a gift!
So as we begin 2009, we pray once again, that we can somehow be used by our Great God to show His Glory and Love in our lives. Thank you all for your continued prayers and support for our family. The road has been VERY bumpy and hard at times, but I know that my relationship with Father, will forever be changed... for the better. He is real to me more than anything. This Faith we have is real. It is all that matters in this life... this is why we are here... to live for HIM! May all of us live! Live everyday, as they say, in light of Eternity!
Love,
April (for all three)
"I thank Christ Jesus our Lord, who has strengthened me, because He considered me faithful, putting me into service." 1 Timothy 1:12
