This is the collection of blog posts that I wrote on our journey with Michael Z. I wanted to put them together here to make it easier for us to share his story with others.
Our 6th child is due in April. Michael is facing several serious health issues. Many of the things he is facing is connected with a disorder called Trisomy 18 although he has not been officially diagnosed with it.An actual diagnosis would require an amniocentesis, which would add another risk to what he is facing. From our visits with the perinatologist and the neonatal cardiologist we have seen that Michael has an omphalocele (a portion of his intestines and possibly some of his liver are growing out into his umbilical cord), heart defects-a DORV (double outlet right ventrical) and an AV canal, his right foot is turned in, and his hands are clenched. The heart defect can be corrected with surgery after he is born at about 3-6 months of age. The omphalocele can also be corrected with surgery. 95% of the children with Trisomy 18 don’t carry to term and if they do, many don’t survive the first year. As you can imagine, we are saddened that our son facing such insurmountable odds, but we also believe that God is still in control and can heal our son, if He so chooses.
We are just asking that everyone that can and will to pray for our son, pray that God’s will be done, that He would give us grace to face this situation, and that He would receive honor and glory through it all.
Thank you for your prayers and for sharing our prayer request with others.
Below are the updates that I have on our Facebook prayer page:
March 5, 2009
Thank you for all of your prayers. We went for another ultrasound yesterday(everything still about the same) and then met with the OB that will be delivering Michael. We have a c-section scheduled for April 6th at Northside Hospital. We will keep you updated as we go.
March 15, 2009
We go for 3 Dr. appt. in Atl. on Tues. the 17th. We will go back for another ultrasound, meet with the OB that will deliver Michael, and we will meet the neonatalogist. This will be the first time we meet with the neonatalogist. Please pray that we will like them and more importantly that God will give us the right Dr. to care for Michael after he is born.
March 18, 2009
We had 3 appt. back to back yesterday. One was for another ultrasound. One was with the OB and the 3rd was with the neonatalogist. We discussed what they would do after Michael is born and how they will care for him. The biggest concern will be breathing issues, especially if he has trisomy 18. Please pray that Michael won’t have any breathing issues. There is still a slight possibility that he does not have the trisomy 18 and we are praying that God would touch and heal our son, but nevertheless not our will but God’s will be done.
March 24, 2009
We had another ultrasound today. The news was discouraging, Michael is not weighing what he should at this time. He is about 3 lbs 10 oz and should be about 5 lbs 4 oz. This is a characteristic of trisomy 18. We were hoping and praying that he would have gained more weight. We have 2 more weeks before delivery and want him to be as big as possible to give him a greater chance. We are still concerned with the heart issues and the chances that he will have respiratory troubles are increased because of the c section combined with the possibility of the trisomy 18. Again, we are grateful for all of your prayers.
March 31, 2009
We met with the OB and the perinatalogist again today and now have a change in plans. Michael is still stable and very active with no signs of stress. Since our last 3 children came early, they don’t want to take too many chances so they have moved our c-section to this Fri. Kim is having some contractions and has started to dialate some. Please pray that Michael will hang in there until Fri. and not get over anxious to get here any sooner.
April 2, 2009
We are trying to get all of the last minute things done before we go to Atl. tonight. We will check in after midnight. The c-section was scheduled for 3:45 tomorrow afternoon, we received a call from the OB this morning and they have moved it up to 10:15 tomorrow morning. Thank you again for all of your prayers. We will continue to keep you updated.
First let me say that we are truly honored and humbled at the prayers, thoughts, gifts, and concerns of so many people from around the world.
Our c-section was scheduled for 10:15 yesterday morning but Michael had other plans and decided to come early. He was born at 7:09 am weighing 4lbs and 0 oz 16 3/4 in long. He is now facing a great battle with all the health issues and medical personnel that are less than willing to give him a fighting chance. Michael’s heart troubles are different and more serious than what we thought. He will require heart surgery before he can go home, but he is too small for surgery right now and they will have to do surgery on his intestines before they can do the heart surgery. Right now he is not stable enough for any type of surgery. Please keep him in your prayers.
Kim was able to go up and see Michael last night for a few minutes and then again this morning. I am so proud of her. I am truly blessed to have her as my wife.
Last night they had Michael on one type of ventilator and this morning it had been changed and his lungs were a little more stable. The neonatalogist said that he may go back and forth between the two. His blood pressure was down slightly and they are treating that with medication and he is having to have a medicine that will keep the PDA open until he can have the heart surgery. If it closes he will loose blood circulation. His omphalocele is being treated by a procedure called “paint and wait.” We are just taking it moment by moment. We don’t know how long the Lord will allow us with Michael, but we do know that God is still in control and trust His guiding in all of this. Michael has already touched the hearts and lives of many people around the world and for this we are grateful.
We have just returned from seeing Mr. Michael this morning. He had a less than good night. Not a real bad night but not a real good one either. The breathing tube that they put in when he was born is really small because of his small jaw and has been causing some leaks which affected his oxygen level last night. They are putting in a new, larger tube today to see if that will help. His blood pressure seems to be doing ok now. They have him on the lowest dosage of the meds for that…
Just spoke with the Dr. as I was typing this. The new tube is in and he is back to room level oxygen on the ventilator. They may actually take him off of the blood pressure meds today if he continues to do well. He has some jaundice but the Dr. doesn’t think he will need the tanning bed right now.
Some days are harder than others and today has been one of those days. God wired me as a “fixer”, I see a problem, I do what I can to fix it. As a husband and a dad, it hurts me to see my wife or any of my children sad or hurting and me not be able to just fix it. I know God is in control but some days we need to be reminded of by Him.
Again, let me take this opportunity to thank you all for your thoughts, prayers and love for Michael and our family.
We were discharged from the hospital yesterday and the Ronald McDonald House didn’t have a room available for us so we decided to come home and spend some time with our other children. We were really missing them. This is the longest we have been away from all of them at one time.
We were able to go in and see Michael before we left the hospital. I wasn’t sure if it would be possible, but I didn’t want to leave the hospital without Kim having a chance to hold Michael. I spoke with the nurse and the respiratory tech and they said, “We will make it happen.” This made Kim’s day as they placed him in her arms.
We did get confirmation back from the blood tests and Michael does have full Trisomy 18. He is still stable and BP and oxygen levels are staying where they need to be. He is showing some jaundice, but he does not need the light right now. Because of his heart condition, congestive heart failure is a concern. Thank you all for your continued prayers. We just thank God for each day we have with Michael.
We are still waiting for room availability at the Ronald McDonald House near Northside Hospital. They called back yesterday and said it would probably be next week. So we are driving back and forth to Atlanta. The drive is not that bad, and we get to see our other children at night.
We went down and stayed with Michael Z yesterday. Kim was able to hold him again for about 1 1/2 hours and to change his diaper. Sometimes we don’t realize just how much we take for granted every day. Michael is still a fighter. He is trying to breathe some on his own, so they are slowly reducing the work that the ventilator does for him. The greatest challenge that Michael faces is his heart conditions. He has what is called coarctation of the aorta and a bicuspid valve. What this means is the vessel that carries the blood to the lungs is very small and narrow and will not allow proper blood flow to the lungs. While a baby is still in the womb, the placenta oxygenates the blood. The baby’s heart has a pulmonary ductis artery or PDA for short, that allows the blood to bypass the lungs. After the baby is born the PDA closes up and the blood then flows to the lungs. The way Michael’s heart is made, if this PDA closes, he will loose blood circulation to the lower half of his body. He is on medication to keep this open until he is big enough and strong enough to have heart surgery. He won’t be able to come home until he has this surgery. Also, as he grows and his heart grows there is a possibility that it will press against his left lung and keep it from inflating properly. If this happens and he is off of the vent, then he will have to go back on.
Michael is still facing a tremendous battle and he has proven he is a fighter and we have let him know that we love him and that he can fight as long as he wants. It can be hard some days, but we are praising God for each day we have gotten to know Michael a little bit more.
Yesterday we celebrated getting to know Michael Z for 1 week. We are truly thankful for each day we get to know him more. He is still stable and they are turning down the ventilator a little more as he is breathing more on his own. They have been trying to put in a PIC line IV.
PIC lines are long, flexible tubes inserted into a large vein, usually near the elbow. The tube (medically speaking, all tubes are called catheters) is threaded up the vein until its tip reaches the large veins inside the chest. PIC lines do not usually require surgery for placement, so doctors may be less worried about them becoming infected. A PIC line can remain in place for several weeks or more.
They are having trouble getting the PIC where it needs to be. Please pray they will be able to get the line in so they can give him more and better nutrition until he is able to be fed.
The heart issues are the greatest concern that we have and whether or not we will be able to find a surgeon when the time comes is a thought that is constantly on our minds. We are just asking that everyone continue to pray that God’s will be done and that He would get the glory from all of this.
As I sat and watched the nurses work with Michael Z yesterday and all that they had to do with him, my thoughts couldn’t help but turn to Christ and Calvary. I watched as each of Michael’s hands were pierced with the IV lines they had run. Then a little later they had to take some blood to type and match for a transfusion, for this they pierced his feet.
As I witnessed this as a daddy, this really broke my heart to see my son go through all of this and immediately my mind thought of this verse in Isaiah and I had to just praise the Lord.
Isa 53:10 Yet it pleased the LORD to bruise him; he hath put him to grief: when thou shalt make his soul an offering for sin, he shall see his seed, he shall prolong his days, and the pleasure of the LORD shall prosper in his hand.
I never get tired or weary of the Gospel. I praise God for the Gospel because it is the power of God unto salvation (Rom 1:16).
(33) And when they were come to the place, which is called Calvary, there they crucified him, and the malefactors, one on the right hand, and the other on the left.
(34) Then said Jesus, Father, forgive them; for they know not what they do. And they parted his raiment, and cast lots.
(35) And the people stood beholding. And the rulers also with them derided him, saying, He saved others; let him save himself, if he be Christ, the chosen of God.
(36) And the soldiers also mocked him, coming to him, and offering him vinegar,
(37) And saying, If thou be the king of the Jews, save thyself.
(38) And a superscription also was written over him in letters of Greek, and Latin, and Hebrew, THIS IS THE KING OF THE JEWS.
(39) And one of the malefactors which were hanged railed on him, saying, If thou be Christ, save thyself and us.
(40) But the other answering rebuked him, saying, Dost not thou fear God, seeing thou art in the same condemnation?
(41) And we indeed justly; for we receive the due reward of our deeds: but this man hath done nothing amiss.
(42) And he said unto Jesus, Lord, remember me when thou comest into thy kingdom.
(43) And Jesus said unto him, Verily I say unto thee, Today shalt thou be with me in paradise.
(44) And it was about the sixth hour, and there was a darkness over all the earth until the ninth hour.
(45) And the sun was darkened, and the veil of the temple was rent in the midst.
(46) And when Jesus had cried with a loud voice, he said, Father, into thy hands I commend my spirit: and having said thus, he gave up the ghost.
(47) Now when the centurion saw what was done, he glorified God, saying, Certainly this was a righteous man.
(48) And all the people that came together to that sight, beholding the things which were done, smote their breasts, and returned.
(49) And all his acquaintance, and the women that followed him from Galilee, stood afar off, beholding these things.
(50) And, behold, there was a man named Joseph, a counselor; and he was a good man, and a just:
(51) (The same had not consented to the counsel and deed of them;) he was of Arimathaea, a city of the Jews: who also himself waited for the kingdom of God.
(52) This man went unto Pilate, and begged the body of Jesus.
(53) And he took it down, and wrapped it in linen, and laid it in a sepulcher that was hewn in stone, wherein never man before was laid.
(1) Now upon the first day of the week, very early in the morning, they came unto the sepulcher, bringing the spices which they had prepared, and certain others with them.
(2) And they found the stone rolled away from the sepulcher.
(3) And they entered in, and found not the body of the Lord Jesus.
(4) And it came to pass, as they were much perplexed thereabout, behold, two men stood by them in shining garments:
(5) And as they were afraid, and bowed down their faces to the earth, they said unto them, Why seek ye the living among the dead?
(6) He is not here, but is risen: remember how he spake unto you when he was yet in Galilee,
(7) Saying, the Son of man must be delivered into the hands of sinful men, and be crucified, and the third day rise again.
(8) And they remembered his words,
(9) And returned from the sepulcher, and told all these things unto the eleven, and to all the rest.
You may say, “What does all of this mean?” It means eternity and where you will spend it.
(9) That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved.
(10) For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation.
(11) For the Scripture saith, Whosoever believeth on him shall not be ashamed.
(12) For there is no difference between the Jew and the Greek: for the same Lord over all is rich unto all that call upon him.
(13) For whosoever shall call upon the name of the Lord shall be saved.
We just got in from spending the day with Michael. The Dr. has turned down the ventilator a little more today. They are continuing to slowly turn it down as Michael is breathing more on his own. They have had a suction on his NG tube (a tube that goes into his stomach) to keep his stomach empty and to remove any gas build up. The Dr. has stopped the suction and is now watching closely, hoping Michael can start having some of Momma’s finest through the tube in a couple of days. We are amazed each day with Michael’s progress and determination to fight and we continue to thank God for allowing us to get to know Michael more each day.
Many folks wonder how we are doing and how we are holding up. We can honestly say we have the peace of God, which passeth all understanding. We know that whatever happens, God is in control and it will be for our good and more importantly for His glory.
I thought I would post this picture for all of those in my family that think I don’t do diapers. I think we sometimes take for granted the little things, even the blessings of changing a diaper. I am learning more and more how very special each moment is. Most of the time we spend our lives living in the past, thinking, “If I had only…” or living in the future, thinking, “Maybe I could…” We spend very little time living in the precious gift of the here and now. Someone said that is why it is called the “present.”
Michael is still fighting hard. They continue to turn down the ventilator and he has started getting some of “Momma’s Best” through a feeding tube and seems to be tolerating it very well.
We are reaching a point now where we will be having to make some very hard decisions on treatments for Michael. His heart condition is very severe and as he gets bigger will probably start experiencing congestive heart failure. We ask that everyone will continue to pray for Michael and pray for us that God would give us the wisdom to make the right decisions regarding Michael’s treatments.
Michael has moved into his own room in the NICU now and seems to be adjusting very well. He has started receiving “Momma’s Finest,” the gold standard in baby nutrition. They started him out with only 3cc and were watching to make sure he digested it well and that there were no obstructions in his intestines with the omphalocele. He is now getting 12 cc of milk and we got to change two dirty diapers yesterday.
Michael is still holding his own in his new room…they have continued increasing his feeds. He is now getting 26 cc with extra calories added to see if we can get his weight up. His lungs are looking good and he is outbreathing the ventilator so he may come off of the vent in the next day or two.
Please continue to pray for his strength, and for our wisdom in the decisions we need to make. God’s grace is sufficient, and may He receive all of the glory.
On April 20, 2009 at 6:43 pm, Michael Zechariah Clements, discovered the beauty of Heaven and the glory of God. He was a fighter and our precious little man. He touched so many lives in the short time he was here with us. I am truly blessed that I got to know him, and I am honored that through this blog that many of you got to know him too.
Thank you again for all of your thoughts and prayers. My family could never thank you enough for the encouragement and support that you all have given to us.
We just stand amazed in all that God has allowed to be done through the life of our precious little man. We may never realize the total impact that his life has made this side of eternity, but will see the complete and perfect plan fulfilled in Heaven one day.
We are troubled on every side, yet not distressed; we are perplexed, but not in despair; Persecuted, but not forsaken; cast down, but not destroyed; Always bearing about in the body the dying of the Lord Jesus, that the life also of Jesus might be made manifest in our body. For we which live are always delivered unto death for Jesus’ sake, that the life also of Jesus might be made manifest in our mortal flesh. So then death worketh in us, but life in you.