Over this past weekend we celebrated Veiyah’s 1st birthday. I wanted to take a moment to reflect on the reason that we were able to do so.
Veiyah was born on September 25th and was immediately taken to bay 1 of the NICU, which is for babies who are in critical condition. Early in the morning on September 26th, Ani and I were woken by a nurse. We were both staying in the delivery recovery room at the time. We were told that Veiyah was having issues in the NICU and that the doctors wanted to see us. As we were walking to Veiyah’s room in the NICU, we turned a corner and saw her room from a distance. There were doctors and nurses filling the room and in the hallway around her room. As we approached the room, a doctor looked at us with tears in her eyes and told us that they were losing Veiyah. On the wall above Veiyah’s bed there were numerous monitors that were tracking her vitals. These monitors have upper and lower limits for each vital sign, and if those limits are breached an alarm will sound. When we walked into Veiyah’s room multiple alarms were sounding. The doctor explained that they had tried giving Veiyah several medications to make her heart beat stronger, but that none of them were working. Her vitals were falling, and the doctors did not have anything else they could do for her.
This point in the story is critical, because I want to make it clear the severity of the situation that we found ourselves. We were in the room with arguably the best doctors in the state. Trained and experienced to save babies lives. In a University hospital that was on the cutting edge of medicine and treatment options. And these doctors were telling us that Veiyah was dying. They asked us if we wanted to hold her while she passed away, and in a place of shock and disbelief we said yes. Ani sat down in a rocking chair and I sat in a chair next to her. A pillow was placed on Ani’s lap and the nurses and doctors prepared to un-hook Veiyah from all of the monitoring cords, so that we could hold her without having to deal with those. The doctors and nurses at this hospital don’t give up, so when I witnessed these events I knew that in their minds there was no hope for Veiyah. They had exercised all of their wisdom, skill, and treatment options to save her, and nothing had worked.
I want to remind everyone of Veiyah’s middle name. It is Jaielle, which is a unique way to spell the name Jael. In most translations this name means “mountain goat”, which at first glance would seem like a strange middle name for a little girl. But we also found translations where this name means “God’s Power”, and that is the reason we chose it. So Ani and I are sitting in the NICU waiting for our daughter to be handed to us so she could pass away in our arms. At this time her vitals were still dropping and the monitors were still screaming. Ani started to pray out loud, she spoke out the name Jaielle, and stated that we believed in God’s Power. In that very moment the monitors stopped screaming, Veiyahs vitals began to rise, and every person in the room stopped in their tracks and stared at the monitors. Doctors and nurses alike had wide eyes and mouths wide open. We quickly told them to stop unhooking Veiyah. Everyone quietly stared at the monitors in disbelief, waiting to see what would happen next. Veiyah’s vitals continued to rise into an acceptable range, and remained stable. Ani and I stayed in her room until the doctors were satisfied that she was stable. They could offer us no explanation as to why Veiyah had recovered from the brink of death, and why things had turned around so suddenly.
I can’t remember what I was thinking or feeling at this time. I think I was in shock and the full gravity of what had just happened did not hit me until later. In the last year I have thought often of the events of that night. Some may argue that Veiyah’s recovery was due to something other than the prayer that was cried out. I can find no other explanation other then at the exact time Ani prayed out loud, the healing hand of God reached down and sustained and restored Veiyah’s life. The best doctors in the best hospital could not save her life, but the healing power of the Lord could.
Over the last year I have also questioned many times why God would answer our prayer for Veiyah, but did not answer our prayers to save Aderah. I honestly do not have the answer to that, and while I am on this earth I may never understand. But that does not take anything away from the miracle that is Veiyah’s life. In the last year she has undergone 9 medical procedures – 4 open heart surgeries, a stomach surgery, a G tube surgery, an exploratory catheter procedure, and 2 corrective catheter procedures. She has received amazing medical care, but I also see God’s amazing hand upon her life. He saved her life that night a year ago, and all the glory goes to Him for that. I believe that Veiyah’s life already has, and will continue to be, an amazing testimony of God’s power, love, and grace. One year ago in a little hospital room in Iowa, the power of God fell on Veiyah and restored her life. She is just a small girl, but I believe that this was a miracle of Biblical proportions, and demonstrates unequivocally the existence, power, love, grace, and saving power of an almightily God. I will always be thankful for that miracle, for the opportunity to spend time with my daughter here on earth. The events of that night one year ago have changed my life. I can no longer question His existence, or the power and depth of his love, forgiveness, and grace. I hope that this story will have a similar impact on people who hear it. Thanks for reading.
On a lighter note, Veiyah’s middle name turned out to fit her better then we thought. She has very strong legs, and loves to kick, just like a mountain goat!
Monday, September 28, 2009
Over this past weekend we celebrated Veiyah’s 1st birthday. I wanted to take a moment to reflect on the reason that we were able to do so.
Tuesday, September 22, 2009
Yesterday they focused on getting through those veins that are occluded (or blocked). This was a very focused procedure. They ended up burning through what they found as old blood, not scar tissue. This made it quite a bit easier than they had predicted. They then ballooned the veins, and it went GREAT! They didn't have to put ANY stints in! Instead of what was predicted to be a 6-8 hr procedure, Veiyah was in the cath lab for a total of 3 hours!!! That included putting her to sleep (slightly) to put in an IV, putting her on general anesthetics and inserting her lines, and then completing the ballooning and getting the blood flowing. She went up to recovery and we sat for about a half hour to an hour. She woke up really fast this time, went down to her room and we were gone by 7pm. Praise God!! The Dr said that the blood is flowing GREAT now and that we can wait to do any major things until her sats start to slowly go down. We will go back in 4 weeks to make sure they are still ballooned pretty well, and then HOPEFULLY have the rest of this year off! Wouldn't that be awesome?
Dr. Divikar is a fantastic Dr. and we trusted that he would really know what he was doing. Above all, though, we trust God and knew that HE really knew what HE was doing. ;)
Tomorrow is V's and Aderah's Birthday! It's Jeremy's birthday too! Selah's is on Saturday and well, yes, my weekend is booked. Can't wait to post the big V's Birthday post with her 1 year pictures! My friend Heidi took them and they are absolutely incredible. SO excited to show you!
This is the day before at her pre-screen~
Notice her shirt..."Delight yourself in the Lord"...V needs to pick out her outfits to go with her mood, yes? ;)
Here are some procedure pics...What do you know, she comes out of another procedure and is holding her own bottle and drinking the whole thing! We are seeing more and more milestones everyday! :)
More V's! Where are YOU seeing V's that make you think of Veiyah? Carolyn was about to eat an onion ring!! Hope it was yummy! :) Thank you so much Carolyn in New Jersey!!
The girls saw these cookies at the bank and yelled MOM it's a V!!! ;)
I just today, received an email from one of V's Knees, Tara. She came across an article and even though it is supposed to be in shape of a heart, she saw it as a V! I see all hearts as V's. :) Thank you Tara in Missouri!!
Friday, September 18, 2009
Aderah was a mono amniotic (momo) twin, to our daughter, Veiyah. They were in a dangerous pregnancy only sharing one sac, same amniotic fluid, and same blood flow. The scare was that they would get their umbilical cords tangled and knotted and eventually cut off oxygen to each other. We didn't get that far. Instead, we found out that Aderah's twin Veiyah had a heart defect and may not live. I was admitted to the hospital in August of 2008. On August 29th, 2008 while monitoring the twins’ heartbeats, Aderah's heart (Supposedly the healthy twin) went into SVT. (Super Ventricular Tachycardia) Her heart was racing at 320 bpm. This went off and on until September 5, when it decided to stay that way. I was in labor and delivery being constantly monitored and finally given a drug called Digoxin to hopefully slow down Aderah's heart. On September 10, 2008, Aderah went into full on heart failure.
Still hopeful for the meds to work, even adding one called Flecanaid, Aderah's heart fluttered like a butterfly and her body and head swelled with fluid. Aderah Psalm finally rested at 5:45pm that night. Her sister Veiyah lived through the trauma of losing her sister, whom shared every needed thing in the womb with her. One week later exactly, Aderah still inside of me, Veiyah wasn't getting enough blood flow and oxygen to her brain. Aderah was still getting it, even though not needed. Our only option was to do a blood transfusion to Veiyah's brain while she was still in utero. It was so very risky. Within a few hours she was doing great, tho. One week later, again exactly, my water broke. I was only 30 weeks 3 days. I labored from 6am on September 24th till 2:38am September 25th, 2008 ...Jeremy (Daddy's) birthday. I gave birth, naturally, (but with an epidural, only way to have any sanity what so ever) to Veiyah first at 2:28am and heard nothing. She was taken from me after I saw her for one brief moment but again heard nothing, to the NICU. Aderah was born 10 minutes later @ 2:38am. Silence. My husband didn't make it on time, my family didn't make it on time. I was alone. I looked away when Aderah was taken out of me. Jeremy showed up when everything was already done. It was shocking. It was as if nothing had ever happened. Aderah was brought to us an hour later in the most beautiful dress. She was perfect. 1 day later the Dr's told us Veiyah was dying. They had no more hope for her. Everything in her body was shutting down. They were handing her body to me to die in my arms.
...Veiyah will be 1-year-old September 25th, 2009. She has been through many heart surgeries, a stomach surgery, cath procedures to balloon her heart, and now faces a heart transplant. This is just the beginning of our journey this last year. All this, and guess what? God is SO good. We wouldn't have made it this far without Him, without our faith in Him to carry us through.
If you don't know Jesus personally, and want to experience real LIFE, He is waiting for you. He's knocking on the door of your heart. Just let Him in. Give Him your heart. Believe that Jesus is the Son of God and that He died on the cross with OUR sin on his shoulders. Ever hurt? Ever Grieve? Ever feel so down that it is so absolutely painful? Jesus didn't just feel physical pain from thorns in His head, Spears in his side, Whips on his body and back, nails pounded into his wrists and feet. He felt every hurt that you have ever felt and MORE, because He felt everyone's hurt. Hurt stems from sin. He felt the fall of man. He WAS SIN on that cross. Think of your deepest hurt. He felt it times billions. So that what? So that OUR sins would then be washed clean. That by believing in Him and His Father, we will be forgiven and join Him one day, and those we have lost to the sin of death, with His Father in the most Perfect NEW place. We will stand in awe of the God that saved each and everyone's soul, that believed in Him and lived FOR Him.
God is good. Don't let a moment pass you by. Don't think you have time to think of it later. He is coming back for his BRIDE. YOU.
We love you Aderah Psalm Karg. We honor your death on earth one year ago, and your birth into heaven. What a glorious Birthday you must be having. Thank you for letting me carry you for as long as I did. Thank you Jesus, for choosing me to carry her. I am so very honored.
Please remember that there are pictures of Aderah at the end of this tribute. If you don't wish to see these pictures, you can either just watch a little bit, or you can choose to not watch at all. No hard feelings. It is a hard thing to do. I did soften the pictures to make them more "likable".
Thank you to EVERYONE who called me, who emailed, who left me messages on Twitter or Facebook, for taking moments of silence...(wow!) for us last Thursday on Aderah's one year death anniversary. You all mean the world to us. Also, every comment you leave is such a comfort to us. Please leave us a comment here so that we can come back one day and remember how lifted up we have always been. We love you all so much!
*Remember to turn off my blog music under "Worship and Lullabies" to hear the music that goes with the video. It is on the right hand side panel in a playlist box! Also, you can watch the video below in full screen by clicking on the right hand bottom square!*
Thursday, September 10, 2009
One year ago, September 10th 2008, my daughter Aderah Psalm Karg went to meet her Creator. Below is the letter that I wrote to Aderah that was read at her funeral. Please take a moment to read this, to reflect on her life, and to honor her memory. Aderah, I love you and I miss you so much. ~Daddy
Aderah Psalm Karg is alive, much more alive than anyone here today. She is and always will be my daughter, and is as much a part of my family as my other children. She is also as much a part of this extended family as any of your children. I challenge you to consider your own children, and to give Aderah the same level of respect, admiration, honor, and remembrance as you would give them.
Often the first question in a time like this, is Why? When I first heard that Aderah had a heart condition, that is the first thing that came to me. I went through the emotions of anger and frustration, and I wanted an answer from God as to why this was happening. Since that time I have come to the realization that I may never have an answer that will satisfy my human intellect. I will always pray that God will reveal that to me, but even if He does not, I will always trust Him and trust that His ways are righteous and true. Ecclesiastes 11:5 says “As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understand the work of God, the Maker of all things.”
I never had the privilege of meeting my daughter Aderah here on earth. So I cannot talk about my memories and experiences with her. The visions that haunt me are of those experiences that I will not be able to share with her and those memories that will never be. I look at my beautiful daughters Madi and Selah that I have been blessed with and I think back to the wonderful times we have shared. And I look forward to the wonderful times we hope to share in the future. With Aderah, I will never be able to change her diaper, to have her grasp my finger. I will never be able to wrap her tightly in her blanket and fall asleep with her on my chest. I will never be able to watch her learn to crawl and to walk, to pick her up after scraping her knee. I will never be able to teach her to ride a bike, and to catch her at the end of a slide. I will never be able to watch her grow and learn new things. I will never get to experience her smile, and her cry, I will never get to make her laugh, and will never have the chance to comfort her. I will never be able to lay beside her as she sleeps and experience the peace and joy of being her father. I will never be able to experience her looking up at me with those puppy dog eyes, and saying yes to what she wants even though I had just said no. I will never get to experience her personality, to learn what she likes and does not. I will never be able to show her how to hit a golf ball or kick a soccer ball. I will never be able to take her to church, and to teach her about the Jesus. I will never get to experience her finding her own relationship with God.
I will never get to witness her adolescent, and turn back the boys who would surely flock to her. I will never be able to buy her a car, and then ground her from it for talking too long on the phone. I will never be able to walk her down the aisle to give her away. I will never be able to experience that precious wedding dance that only a father and daughter can share. I will never be able to experience the grand children she may have given me.
My heart breaks when I think of these things, but is also overjoyed to know that soon I will be with Aderah in eternity and we will be able to share experiences there that will make the experiences of this world pale in comparison.
One thing that comforts me is that I know that Aderah is in heaven right now, for Mathew 19:14 reads “Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these” Even though Aderah passed away before birth, she was alive and was my child, as well as God’s child, from the time she was conceived.
Another thing that comforts me is that the grief and loss that I feel now is only temporary. It is promised in Revelation 7:17 “For the Lamb at the center of the throne will be their shepherd; he will lead them to springs of living water. And God will wipe away every tear from their eyes."
We serve a merciful God who is full of grace and comfort. In times like this I grasp to His promises of comfort. 2 Corinthians 1:5 says “For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. And Matthew 5:4 says “Blessed are those who mourn, for they will be comforted.” Lord I pray that you bring your comfort to my family.
For Aderah’s sister Veiyah, who continues to struggle for life, I want to take hold of several promises of prayer from the bible. Matthew 18:20 says “For where two or three come together in my name, there am I with them." John 14:13-14 says “And I will do whatever you ask in my name, so that the Son may bring glory to the Father. You may ask me for anything in my name, and I will do it.” Right now we are gathered in your name, and we pray for Veiyah, in Jesus name, that for the Father’s glory you will bring a miraculous restoration of life to her body. Amen.
A final word to my daughter Aderah. Aderah, I am grieving for the things that I will not be able to share with you on this earth. I leave you in the care of your creator and I know He will raise you in peace and happiness without any of the pain and heartache of this world. Know that I am your father, that I love you, and that someday we will have that dance.
Aderah, this is your psalm:
13 For you created my inmost being;
you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be
Ani is trying to get a slideshow together in honor of Aderah's first year. Please pray for her as she puts it together. Also, there will be pictures of Aderah in this slideshow at the very end, so you can choose to watch a little of it, or you can choose to not watch it at all. This is something that is really helping us, to show our daughter, to show our daughters together.
Thank you all so much for your amazing love and support today. We appreciate you all so much.
Labels: Aderah Psalm
Friday, September 4, 2009
On Monday we took Veiyah down to the University for a pre-screening process. The doctors drew blood, did a physical exam, and explained what to expect from the cath procedure. At that time we were going into the procedure with the notion that the results would tell us if Veiyah was a candidate for a transplant, or if she needed to wait and grow, allowing her pulmonary arteries to get larger.
On Tuesday morning the procedure was done. The doctors had difficulty finding a pathway for the cath to get to her heart. They tried in both thighs and in her neck. They were finally able to get in through her thigh, but after the procedure she had issues with bleeding from all 3 areas. So she stayed in the recovery area for several hours trying to get the bleeding to stop. For the cath procedure they give her medication to thin out the blood, and she is also on a daily regiment of aspirin which has similar affects. So that was the main reason for the bleeding, which they finally were able to get under control.
Talking to the doctors and looking at the pictures from the cath was a struggle for both Ani and I. We both understood things differently, or maybe the doctors conveyed the information differently to both of us, as we had talked with them at separate times. But the jist of what they found is that the artery that brings blood back to Veiyah's heart from the upper part of the body was completely obstructed. This artery was detached and moved during the Glenn procedure, and then moved back to its original position when the Glenn was taken down. Those procedures were earlier this year. The obstruction is scar tissue and/or dried blood, either way a direct result of the previous surgeries. The body is an amazing thing, it adapted to this obstruction and found alternate pathways to get blood back into the heart. By looking at Veiyah's chest you can actually see a spider web of veins, we had no idea until now what those were. The problem with this situation is that in order for Veiyah to undergo any future heart surgeries, including a transplant, that main artery will need to un-obstructed.
That means that within the next several weeks she will be headed back to the cath lab. The plan on how to remove the obstruction will depend on what it looks like when the doctor gets in there. It could be a balloon procedure, or it could have to be removed with an instrument that burns through the obstruction. The doctor even mentioned to me that they can use high frequency sound waves to get through it. After doing that, a stint will be installed so that the artery does not close back down. There are several aspects of this procedure that make it riskier then the exploratory cath she just had. First, because Veiyah has had so many procedures and surgeries in her short life, access to her arteries is all but gone. That means that for this procedure they likely will have to enter the cath into her liver, and get to her heart that way. They may also try to get access to the artery through her collarbone, but that also can be tricky. Either approach is more complicated and more risky then going in through an artery in the leg. Second, this procedure involves cutting and opening an artery which is near the heart and lungs. So there is a risk that something could get cut that should not be, and the surgeons would have to open her chest to repair. The doctor told me this was a small risk, but made it sound to Ani like it was a large risk, so we aren't exactly sure. This is a procedure that despite the risk, has to happen in order for any future repairs or transplants are possible.
The doctors are also discussing the long term plan for Veiyah. Whether after the cath she should have more surgical repairs done to her heart, or if she should immediately be a candidate for a transplant. I honestly can't say what I hope to hear from the doctors. I find it impossible to pray for a transplant, because even though she would then have a healthy heart, that would involve the loss of another life. And without a transplant her heart muscle will eventually wear down. All I hope for is that my daughter lives and grows old. I will leave the HOW up to God. Please pray that God reveals his perfect plan to the doctors and to us.
Please pray for Veiyah's life and health during this next cath procedure, and for a miraculous outcome. Also please pray for our family, as every time we take our baby to the hospital our hearts break for her. I can't put into words the toll that is taken on us each time. But we trudge ahead, willing to sacrifice everything for this little miracle. Because we believe in her, believe in the amazing value of life, and believe that God is not done working in her. Please agree with us that God will continue to grow and prosper the miracle that He birthed in Veiyah.
I wanted to ask for prayer for myself and my family this month. It's September! Veiyah will be 1 on the 25th! So hard to believe! Hallelujah!
On September 10, we will remember our sweet Aderah whom one year ago this day, Jesus perfected.
Everyday right now is a challenge. I struggle in remembering just yesterday. I'll struggle tomorrow remembering writing this. I fight it too much, and Jeremy tells me that it's natural, that God gave us this part of our brain as a blessing...so that we don't have too much to handle.
I am trying to get a post together, or 2 or 3 that will tell the story from the very beginning of my pregnancy till the day we laid Aderah's body in the ground. I didn't start really blogging until after that. Then I will do the rest another time, but I really want to do this in time for her day that she went to be with Jesus, or in time for the day she was birthed.
Be on the look-out! And please be on your Knees for us this month. It is a month of sorrow but also a month of celebration! If you remember, Veiyah and Aderah share Jeremy's birthday and then Selah's birthday is just 2 days later! What was up His sleeve? :) hmmmm.