hree years today ago a miracle unfolded before our eyes in the most awesome way.
We were at the University of Michigan for our daughter Jessica Joy who has had two previous open heart surgeries, to see an orthopedic surgeon because of neck/spinal problems. While there she went into heart failure and needed emergency open heart surgery to save her life. The cardiologist on call remembered her, and her surgeon, who does surgeries and teaches around the world, “just happened” to be there.
There are so many details as it led up to this day, as God was laying out the hedge of protection around her, to have her at the right place at the right time. We knew she’d need surgery eventually, and the positive about having an emergency surgery is we had little time to worry, and it was overwith. It was also just a week after our son’s heaven anniversary date, and God gave us a miracle to savor over for this month, to renew our joy of the season.
The full story is here, but I just want to remember this special day, to be so thankful how God has blessed us with Jessica Joy and her dedication to her Savior as well.
To God be the Glory!
Great things He has done!
ut what if mama . . . ” We have similar thoughts and anxieties. But I’ve got to suck it up and be strong for her. Little does she know I am just as nervous and have the same fears.
“Why do I have to be the only one with heart problems in our family,” she asks me.
“Would you want one of your siblings to do through this?” I ask. Why couldn’t it be me instead?
She shakes no with the tears streaming down her face.
“But why do I have to have all these problems.“
Ohhh I ache for her. Why God? Why does she have to have these problems? But, I explain to her again, that it was probably the progesterone shots that I took when I was pregnant with her. I miscarried two babies before her and the doctor put gave me the shots to hold my pregnancy with her. Later I found out that the number two risk was heart defects. I was upset at first we were not told this, BUT had I not taken the shots, we may not have been blessed with her life at all. I told her, I’d much rather have her, surgeries and all than not have her.
Jessica had a cardiology appointment this past Monday, along with an ECHO, an ultrasound of her heart. Her mitral valve which was replaced two years ago emergently, is “narrowing” and pressures around this are higher. Normally the doctor said she’d let it go, but being this is what put her into heart failure before, they are not taking any risks. She is scheduled to go to the U of M on Monday to see the surgeon’s cardiologists and look further at her heart and decide if or what should be done. In the meantime, her coumadin (blood thinners) have been increased.
And our fears have risen some . . . and we are pleading with God to allow more time before another surgery.
And to give her peace . . . us too.
“What if I don’t make it until Monday? What if my heart stops working again? What if they miss the problem?”
I can’t answer her except for my faith. I truly believe, especially because of her last miracle surgery, despite it being done emergently, that God amazingly showed Himself and so precisely took care of her. That is not going to stop. I just don’t believe God would allow her to come this far and take her now. She has such a genuine love for people and does not hesitate to show Him to others. Will He allow her to go through more suffering? Yes, I do believe so – any of us. Yet, I believe she will coming shinning through like Job, and be an amazing testimony.
And again . . .
Would you please pray for peace for Jessica and our family and wisdom for the doctors? Thank you!
Joining in with Emily at:
wo years ago today began an awesome miracle of God’s perfect timing all coming together in an amazing way as He extended the loan of our daughter, Jessica Joy. We were at the University of Michigan for an appointment with an orthopedic specialist regarding her spinal defects and while there, she went into heart failure, requiring emergency open heart surgery to save her life quickly. Her surgeon who travels around the world, just happened to be there. The cardiologists on call, just happened to remember her as a baby. She was called the ICU Christmas miracle. We continue to rejoice . . . and remember. For those that prayed us through, thank you. For those that don’t know the story, I invite you to read God’s and Jessica’s story.
Miracles still happen!
Several weeks ago with an In Other Words post, I shared we were going through a difficult time with my husband having health concerns. It was a long five weeks of trying to figure out what was going on – from first being diagnosed with high blood pressure (true), having gout (not); then diabetes (probably not), with still no answers. My husband was having terrible problems with very swollen feet and ankles, extreme tiredness, and fevers, chills and sweats for over 5 weeks. He had a heart stress test and echo which showed a healthy. However, two CAT scans discovered he had enlarged lymph nodes. After seeing several specialists it was narrowed down to lymphoma cancer or sarcoidosis. It was a very concerning and fearful time for us. We were careful not to use the “cancer” word especially for the sake of our younger children. It seems our children have gone through so much, and this wassomething I pleaded with God to not allow us to walk this path. My husband does small engine repair (lawn mowers, tillers, leaf blowers, etc) and this is his busiest time of the year, esp. after a slow winter and Jessica’s surgery. To determine which it was, he had a bronchoscopy done for biopsies to be taken. He had a wonderful pulmonary doctor who was also concerned, who came in on his day off to see him and did the bronchoscopy that afternoon in the hospital. Two days later we were GREATLY relieved to learn it’s sarcoidosis.
For the past two weeks my husband has been on predisone which has definitely helped. Sarcoidosis is an auto immune disease, so it will be something he will always have to deal with as it goes in and out of remission. For some it affects their organs, especially lungs, and thankfully for my huband it is only the lymph nodes and his joints. We realize now he was noticing the affects of this probably three or four months before, so hopefully we can watch for the on-set of it and take action quicker. His energy is about 90%, his legs still feeling a little heavy but the swelling and bruising mostly gone. He sees the pulmonary doctor again in a few weeks.
And Jessica Joy is doing amazingly well. It’s been almost 5 months since her emergency open heart surgery. I see a miracle with her every day. She will always have the aches and pains especially because of her spinal defects, which is hard to see, and limits her in some things she’d like to do (like jumping on trampoline, skateboarding, soccer, etc). But her heart is doing wonderfully and she tells me just about every day how fast she ran or rode her bike with no chest pains, which she had a lot of last summer and fall. She is sleeping good at night and no longer takes medication to help her sleep (she was having anxiety attacks at night because she went into heart failure as she was going to bed).
Thank you for praying for our family. We have much to be thankful for. Spring seems so much brighter this year!
As I have been in awe of all God did to orchestrate the sparing of Jessica’s life just three weeks ago, the thought of “if only God would have spared Matthew‘s life” passes through my mind. I missed him even in the hospital, remembering bittersweet times of him spending a lot of time with me when Jessica spent 11 weeks there as a baby. He was only nine years old, but he enjoyed helping me, running to Wendy’s Restaurant in the hospital to get me my Chicken Nuggets cravings (I was pregnant). He “helped” a doctor, named Matthew, by getting him food. One time the doctor even gave him his pager and told him to take messages for him. The doctor called our Matthew, “Dr. Matthew”. Jessica would not remember any of this, but the bittersweet memories of him being with me eleven years ago, came back. I sure wish I took more pictures then.
Another unique timing, I believe of God, is before Jessica’s surgery, I began reading Randy Alcorn’s book, Heaven. My dad is also reading it – my mom passed away just six months before Matthew, so this has been something to relate with him, and talk to him about. I cannot even go into the depths of this book, but since Matthew‘s passing I’ve pondered often on the Hebrews 12:1-3:
Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart.
Reading this book, made me think not of only all our family, friends and readers here encouraging us and praying for us, but I imagined Matthew being a part of that great cloud of witnesses, personally pleading with God to save Jessica’s life and encouraging us to “throw off” those doubts of why and what if and to fix our eyes on Jesus and to not grow weary and lose heart. On Earth Matthew was one that believed in prayer, even for the small things, I can only imagine how much more he talks to Jesus now!
I‘ve received numerous e-mails asking me the “full story” regarding Jessica’s emergency open heart surgery and how how it all fell into place, especially those who happened upon in the middle or near the end. It’s all here on my blog, our day by day journal of what we went through, but I’ve put together more details of the puzzle pieces God fit together even months before her surgery and how it all came about in a blog page (which will show the link to the right under My Blog Pages box). We serve an amazing God, and all the glory goes completely to Him.
Today was a good day. Jessica had a post-op cardiology check-up with her cardiologist. Her cardiologist was so pleased and they all marveled in the office of her being in the right place at the right time. Her cardiologist gave her a hug upon seeing her. We are so thankful for the loving, “real people” type doctors that have been put in our lives.
The cardiologist pretty much gave her the okay to do what she wants to do (except for lifting heavy things and the limitations with her spine). She can even go to church now – but don’t breath on her please! 🙂 She still has to have an x-ray done locally to make sure her lungs are clear before reducing the Lasix (diuretic) she is on.
She also got the okay to get an MRI done, so as soon as the orthopedic surgeon knows, and we get an appointment for one, that will be the next step. This past weekend I’ve been able to do quite a bit of research on Klippel-Feil Syndrome (KFS) and have met other families on-line with children in a similar situation as Jessica – and some much worse. We know we may still have a long road ahead with this. One of the main things is when she needs surgery, it will be probably be a minimum two week hospital stay and a long recovery, including being in a halo for about six months. That’s very hard to imagine, with her being more self-conscience in how she looks, this will be a major issue we will have to slowly prepare her for when the time comes.
I’ve struggled with this . . . the idea of her being paralyzed and the idea of a halo and a life-time of chronic pain for her. It will not be an easy life for her. Then that Still Small Voice says to me, “If I so delicately took care of her at precisely the right time to have her at the hospital when she needed to me, can’t I take care of this too? Can’t another miracle happen?”
I am praying for a miracle. I am praying that something unbelievable happens again when they do the MRI and find it’s not as bad as they said. I’ve met a mom in the last couple of days who did not find out she had KFS until she was 40, had surgery at 41 and had a baby at 43! I am praying her neck is stronger than we thought, that God just builds up those bones and yes, even heals her . . . but then those doubts come in my mind . . . “would God really do that?”
Will you continue praying for her? Pray for another miracle? Pray for direction with the doctors? Pray as we may even seek yet another opinion? And pray for the continued hedge of protection around her. Most of all, pray in thankfulness with us, as we remain in awe of God extended her life in such a gracious, miraculous way.
My husband & I along with Jessica kind of hit a low today. It’s not that we doubt that God cannot change things around. It’s not that we doubt the miracle that took place saving her life just two weeks ago today, but it’s getting back to “normal” and knowing for Jessica, it won’t all be normal. Both my husband & I spoke with the orthopedic surgeon today, and the serious concerns regarding her neck and spine remain. Until she has an MRI we will not know the extent. The “good” is that the nuclear bone scan she had while in the hospital shows her bones are not deteriorating. The x-rays however showed, she has a weakness. I do not know all the terminology at this point. It’s a lot to soak in. But as we were told while she was in the hospital, she has Klippel-Feil Syndrome. Vertebraes C-2, 3, & 4 in her neck are fused together – which grew this way from before birth. The main concern the risk now between vertebraes C-1 and 2. It is not stable – but to what point, we do not know. Because C-1 is connected to her head and C2, 3, & 4 are fused together, there is the instability between the C-1 & 2. She also has the hemi-vertebrae in C-7 which is 50% missing and also somewhat fragile.
In talking to the orthopedic surgeon today, which we had to talk to Jessica about today, she is to be very limited in “playing”. There is no more roller blading, skateboarding, jumping on a trampoline, contact games, amusement park rides, diving, wrestling, jumping off the swing while swinging high, dodge ball, sledding with other kids/trees around (she can sled down a hill, if there is no one to bang into and no trees in sight). Any major blow to her head, could paralyze her.
So, where is the bubble wrap?
My heart is just breaking for her. She wants to be a normal child, having fun, not worrying about breaking her neck. We want her to be a normal child. But, her normal, is not going to be normal. Her siblings are going to be worried . . . and the thought of one of them just having fun and accidentally hurting her . . . oh, I do not want one of them carrying the guilt of hurting what is already half broken. She does not want to be treated differently and does not want her friends thinking she is so fragile.
I know in my head how God so precisely took care of her – I know He has a plan for her and wants her living. I know His ways are not mine – I just pray she is never paralyzed. My heart hurts and asks the whys . . . again.
We do not understand the details yet, and we wonder probably along with you – why not just get it fixed. A neck/spine surgery is major, and there is major bleeding with it (and she is on coumadin to prevent blood from clotting in her mechanical mitral valve). Also, the orthopedic surgeon said she may have been at the state she is in now, her entire life – we do not have anything to base it on if it has gotten worse or not. She will need it fused at some time, and then at that point, she will have very limited (if any) mobility in her neck.
So, I am asking for prayer for all of us – prayer for peace. Jessica was very sad when we had to be honest and explain to her. She cried. We cried with her.
We have a post-op cardiology check-up Monday afternoon and we anticipate that going well with her heart, and we know her cardiologist can give us some direction as well, in what to do next regarding her back. The main concern is when an MRI can be done.
Please pray for a hedge of protection around Jessica and a peace for her and our family. She does not want life to be “boring” as she said. She’s a kid. It shouldn’t be.
We got home mid-afternoon yesterday. It was wonderful to be greeted by all the kids. There certainly was lots of chatter, tears, and rejoicing. We are thankful for a safe trip home as it’s the worst fog we have ever driven through. Our boys were putting up Jessica’s new bed when we got home, and she slept very well in it.
We had our Christmas last night with the children. Jessica wanted venison stew on REAL mashed potatoes. The joy of having Jessica home and being together certainly was greater than the opening of gifts. I did not see the excitement with that as much as it was with just being together.
Jessica seems to be doing very well with the pain. She took Motrin before bed and when she woke up (and she slept almost 12 hours straight). She is walking around and chattering with the little ones as I type this. The only thing she is having a difficult time not doing is lifting her baby brother. She cannot do that for 6 weeks.
So, now, it somewhat getting things back to normal and in our routine. She will see her cardiologist shortly after the new year. We hope to hear more soon from the orthopedic surgeon in what direction to go. We were thankful to learn that her bone scan did not show any bone damage – meaning that blood is going to all the bones as it should. She still needs an MRI which we can do locally.
There will not be updates now unless there is some major change or we get doctor’s reports back. We want to thank you all most of all for your prayers. We know without a doubt Jessica was so delicately cared for by our Savior and we are thankful for all those who intervened for us. There are so many details people took care of, and we thank you. So many offered to do things (especially with the rental car, and we thank you for the willingness, but it came down to we had no choice but to do that ourselves because of the legalistics of it), and offering to give our kids rides (though it was better to keep them home) etc., and we so appreciate all the love shown to our family.
We remain in awe of how this all transpired and we hope that you know, the way God love us and made it so real and evident, He does of you and your family as well. Please continue praying for Jessica’s recovery and that the back issues can “easily” be corrected. Thank you.
P.S. You can click here to see my son singing at grandparents’ while we were in the hospital. I shared before the words of this song, While You Were Sleeping by Casting Crowns. My sister-in-law recorded this and just want to share this.
It’s hard to believe that one week ago today Jessica was out of surgery and just recovering and thankfully, tomorrow we are going home! We might need a boat to get home. It’s suppose to get up to 60 degrees and after a couple feet of snow this past week, there will be LOTS of water! I am not sure if they make U-Hauls to go behind a boat to get all our stuff home though! Jessica was delighted with a very nice gift package from our church family ~ lots of little toys and games, stuffed animals, candy, etc. Every since getting out of ICU she has gotten several gifts a day. Thank you to so many of you!
We have an incredible church family ~ many who have helped in various ways from meals, to visiting with our children at home, bring diapers over so our daughter did not have to keep up with cloth diapers, phone calls checking up on them etc.
One family blessed Jessica with a brand new single bed/mattress set so she does not have to go up into her bunk bed. We were planning on doing this soon anyway, but just fast-forwarded it. Another family got her new pillows. We are so thankful for friends and family helping take care of so many details for us while we were away.
Her coumadin level was slightly low today, but they are going to count it as long as she is where she is suppose to be tomorrow morning, and we are counting on that!
Our last night here we are in a new room. A new child was moved into our room and was throwing up (we think from surgery) and we just did not want to listen to that. Thankfully, they wanted the room for a baby, because that room was close to the nurse’s desk. Now we are down the hall with a large corner room with two sides full of windows. We get quite a view. There’s a tall tree filled with lights right outside of it. So far there is no roommate, so it should be an extra quiet night!
I am not sure when we will be able to update tomorrow, but no news is good news. We are so looking forward to reuniting our family. We have so much to be thankful for ~ such a precious gift of life. Thank you from the bottoms of all our hearts for your prayers and encouragements and holding us all up. We are indeed blessed.
It’s been a pretty quiet day here.
It was not a quiet night of sleep. Jessica’s room is right across from the nurses’ party break room, so they were having their staff parties during the night. Our room’s door kept getting left open and there was talking outside of it. There was a separate nurse for the baby in the room, so there were many interruptions throughout the night. I got up about 6 times to shut our door – the last time, I shut it a little louder, and it seemed to stay shut better! Tonight should be better.
Jessica’s INR (blood thinning level test) is still too low. It was 1.9 today and it needs to be a minimum of 2.5 two days in a row before they will release her. Please be praying for this. She says her pain level is at a 3. This is the lowest she has said!
We definitely have to be Jessica’s advocate here. It got to be close to 11 a.m. and the INR test was not done. I asked why, to find out that it had not been ordered! So, tonight I asked the nurse if it was ordered for tomorrow morning and again, it wasn’t! It! One night she did not get her Coumadin (blood thinner) until I asked and found out it was forgotten! This is the main reason we are here now!
We received a “real” Christmas lunch today. A local church brought over a honey spiral ham, real mashed potatoes, green bean casserole, yams, rolls, etc. for the entire floor. It was so nice and there were quite a few people there, including the coach from Cornerstone & his wife. Their three month old baby boy is doing well.
It was interesting with one of the cardiologists that came in to check on Jessica today. I’ve tried to make it a point to thank all the workers, docs and nurses who come in to do their jobs, thanking them for working on Christmas Day. I thanked this particular doctor and he said he did not celebrate Christmas because he is Jewish. Then he told me it was the talk amongst the doctors of the miracle of Jessica. I had the opportunity to give God the credit and how thankful we are for the gift of her life, and the gift of Jesus!
Norm came back tonight and they let Jessica leave the floor for an hour so we took her down to the cafeteria to pick out what she wanted to eat. She had to wear a mask down there. By her walking, you’d never know that 6 days ago she had OH surgery! One week ago at this time, she was beginning to go into heart failure. What an awesome journey of God’s faithfulness!
This will be a shorter update, being it’s Christmas Eve and I know so many are spending time with family. The rest of my family back home is at a Christmas Eve service. Jayson is singing “While You Were Sleeping” by Casting Crowns along with playing his guiar. I am missing my kids terribly tonight, our Christmas birthday cake for Jesus and just being together.
It was a good, busy day. Jessica did not have an MRI, but had a full bone/body scan. She still had to lay still for two 20 minute periods and did very very well. I am so thankful! She also had a series of x-rays. Her lungs look clear except just a tiny portion of the bottom of one, but a great change.
We were actually hoping and praying to go home on Christmas day. It was going to be a surprise for the kids, but Jessica’s blood thinning levels are not good yet – too thick. It needs to be thin enough so it does not stick in her mitral valve. We need to have two good blood tests in a row. So, the earliest would be Friday, but if we have one good day, and the next is not good, we start over. So, it’s a little discouraging at this time.
Jessica is doing fantastic. It’s really unbelievable how much strength she has. She walks right along like nothing happened. She and Heather played WII – doing sports games for two hours and JESSICA won against her 17 year old sister! She’s been eating and drinking better today – even asking for food.
Someone from orthopedic surgery is suppose to give me a report tomorrow on all her scans and x-rays.
Though it’s sad being away from our family all I have to do is look at Jessica, and be overwhelmed with such a wonderful “Christmas Miracle”. May you all have a blessed Christmas.
Jessica had another good day of moving forward. Last night was frustrating with a roommate down and depressed about life, wanted to die, and moaned and cried a good portion of the night. Jessica did not need to hear any of this. I talked to a couple of nurses, and finally one nurse heard her and the woman was moved to a private room. We now have a newborn baby in the room and so far have not heard a peep from him (probably will at 3 a.m. if he’s a typical baby).
Late morning Jessica got the final two chest tubes out and pacemaker wires. She still has a medicine port in her one shoulder area, but other than that she is not hooked up to anything. In the afternoon she went downstairs for a echo and EKG. I thought I’d hear the results by now, but haven’t.
One of the main things that will hold her up in leaving is her blood thinning levels. It’s very important to have it at a certain level – not too thin to cause bleeding risks and not too thick to cause it to stick to her mitral valve. Today it was still too low. The potential bedsore is slightly worse – just breaking through so please, please pray for her – comfort that she can lay to one side and the strength to walk more. We just do not want this to get serious.
Another big move is I spoke to the orthopedic surgeon today who came in late tonight. She was able to look at the x-rays & her neck/spine is worse than we knew. Besides a hemi-vertebrae in C-7, she has what is called Klippel-Feil Syndrome and for her it means vertebreas 2,3, and 4 grew and are fused together. Along with this syndrome it’s very typical to have heart defects. The doc is also ordering a viewing of her kidneys as it can be typical for a missing kidney or an odd-shaped one. It may not be anything that could cause problems, but we should be aware of it. I am so praying this is not another problem. This would be discouraging at this point. We are hoping that they can get her in for an MRI and additional x-rays on her neck/spine tomorrow. Please pray this can be done, as it would be so much better to have a diagnosis before everything is in the Christmas mode through the whole weekend – and we would not get anywhere.
Several have asked what my daughter Heather is doing here. She has been such a big help and does so good just with being with Jessica and doing things. Being Jessica is not hooked up anything, she can take her for walks. There is a game room and they played WII and have done some crafts. She has helped fix her hair and they go on the computer together. The hospital provides computers for the kids right in their beds.
A neat thing happen today that again showed God’s divine planning. When Jessica had to be taken emergently for the surgery, another child had to be bumped. It was just a matter of minutes before surgery was to be starting on this child. Today while Jessica was in the game area, a man walked in with a Cornerstone University hoodie on. I mentioned to him that my husband and I met there and we have friends who work/teach there. He graduated in the mid-80’s and is now the golf coach there. His last name is Eric Campbell. I asked him why he was there and he said he has a three month old baby that had surgery on Monday. He was suppose to have the surgery on Friday, but had to be bumped because of an emergency. I told him that child was my daughter, and here she was sitting up ALIVE and I told him I had thought & prayed several times for the family that had to be bumped because I am sure it was so hard when you’re all prepared for it. He was very excited to meet us and Jessica said and was thrilled to see who took his child’s place., and hopes to have his wife who was with the baby come meet me. Eric’s baby had surgery on Monday and he told me he’s doing well. Isn’t God amazing?
So for my Cornerstone & WCSG friends, please be praying for the Campbell family and their baby’s recovery.
Well, Jessica is settling down for the night as Heather is doing all our laundry and we hope to get to sleep soon. I am thankful I was able to get a nap this afternoon (and started to dose off on the bed by Jessica as she was getting her echo done today!).
Thank you for your continued prayers for Jessica and our family.