Welcome

**If this is your first time to Justin’s blog thank you for your interest and support. Please start reading our post’s in reverse order starting with “Prebirth Story: Pregancy and Diagnosis of CDH” at the bottom. Thank you

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Remembering Justin

Keeping Justin’s life alive

Even though time has passed Justin remains very much a part of our lives and how we raise Andy and Lily. The University of Michigan Mott Children’s Department has a Children’s Remembrance Ceremony in April, which we have attended each year since Justin’s passing. They have a craft time prior to the service and our crafts are displayed in our home. The service includes music, special readings and a parent and health care professional sharing about a child who has passed away. It’s incredible to be in a room with other parents who have gone through similar situations and share in this journey. The University also has a Walk to Remember and Tree Planting Ceremony in October, which we also attend yearly. It’s a beautiful walk alongside the path near a river to the opening where the trees are. We have taken Andy and Lily and they have helped plant trees and it’s another reminder of how life` can come after a loss. This service also includes music and a parent sharing about their child who has passed away.

We visit Justin’s spot at the cemetery often as well. We never would have imagined taking our (at the time) nearly 2 year old (Andy) and now Lily to the cemetery as often as we do. It’s not a typical place you take children on the weekend, in the evening or on holidays. But for our family, it’s very typical. It’s a great place to connect, decorate his spot with flowers, toys and little mementos and share with him about what’s going on in each of our lives. The kids enjoy running around as there’s a lot of open space and a statue to walk around. We also go as a group yearly with Jess and Dan’s families to celebrate his birthday. We share something meaningful about Justin, listen to music and send off balloons with messages. We know Justin isn’t really there, just his physical body is. However, we enjoy visiting the place he was buried and keeping Andy and Lily part of remembering his life. We’ve lit candles, danced, listened to music, cried and laughed there. We know he is in heaven with Jesus where he isn’t in any more pain or hooked up to multiple machines to keep him alive. He has life more abundantly now than any of us can feel, but will feel someday if we know the Way.

Justin’s life made us reevaluate our priorities and because of our experience with him, God has shown us just how much we need Him and how we can’t do this on our own. As a result, Dan and Jess’ marriage grew stronger and more solid because of the firm foundation that was laid and continues to be strengthened. Enduring the loss of a child can do terrible things to people. It can cause decay in relationships, blame, depression, etc. It would be so easy to fall into a negative mental place, but only God can pull us out of those dark places and it’s when we are broken that His Light shines through to give us hope and a future.

So as we pleaded in a previous post (Justin’s Celebration Ceremony) about reaching out to learn more about our need for a Savior, we reiterate that here. No matter what you are going through, God is bigger than your struggle. We are living proof of how God pursues us and strengthens us and continues to do so. We still have tough days: February 26 (Justin’s birthday), March 3 (Heavenly birthday), April 25 (due date), holidays, etc. There are also those moments that catch us “off guard” when we hear a song that was played at his ceremony or come across something to remind us of him and it’s like that wound is still raw. Grief changes, it doesn’t go away. However, realizing that we can’t do it on our own and we need something bigger, someone bigger helps the weight not be so burdensome and overwhelming. There’s no one else we’d want to help carry our load than the one who carried our load on the cross.

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Lily – Rainbow Baby

For those who have followed our journey with Justin, thank you for taking the time to read his story and for your love and support.

The reason for starting Justin’s Journey was to share with family, friends and loved ones Justin’s life and the impact he has had and continues to have on us. Ultimately, his story is a love story. It’s not just about the love we have for our son, but the love that God had for us to send His son so we will one day be reunited with our son, Justin and our Savior.

It’s been nearly three years since we posted Justin’s journey and we wanted to share an update on what our life looks like now. As most of you recall, Justin was born at 31 weeks at the end of February (26th) and passed away early March (3rd). His loss was devastating and difficult, to say the least. We mourned and continue to grieve. After the service we went away for a few days to relax and pretty much do nothing so we could process what just happened. When we returned, life took on a whole different meaning. When you lose a spouse, you’re a widow (er). But what do you call parents who have lost a child? There isn’t a word for it. We drew closer to God than we ever had before. We prayed more, hugged Andy (our 20 month old son) more and took heart that each day was a gift.

We knew we wanted Andy to have a sibling here on earth, and hoped God did as well. It wasn’t an easy decision and would be easy to criticize, but we tried and got pregnant again mid-May, just 2 months after Justin passed away. This pregnancy, although wanted, was very difficult on Jess. There were mixed emotions about being excited for the chance at another sibling for Andy, but cautious anxiety about the outcome. Besides being a little more nauseous this pregnancy was moving along perfectly.

We knew if we were blessed to get pregnant again, we wanted to go back to the University of Michigan for the anatomy ultrasound. They welcomed us back, so when the baby was 15 weeks we made the drive to U of M. It was surreal to walk through the Women’s center, sit in the waiting room and have an ultrasound at the same place we received confirmation of Justin’s diagnosis. We were nervous, but knew God had his hand in whatever we were told. The tech took all the usual measurements and we were relieved to hear that this baby didn’t have any indicators for CDH. We were so thankful and also curious to find out if it was too early to tell the gender. The tech looked for a few more indicators and finally gave us the news, “you’re having a girl!” We were so thrilled! We hadn’t planned on having 3 children and were looking forward to having 2 boys, but now we had a little girl on the way. Jess will never forget Dan’s reaction. He probably won’t admit it, but he cried and hugged Jess, burying his head on her shoulder and said “I’m so happy we’re having a girl!” Before we left the hospital we bought a couple items at the gift shop to give to our parents as a way of revealing the gender. We stopped by Jess’ parents’ house to share the news that the ultrasound showed a perfectly ordinary baby, no CDH. We also gave them a bag with an outfit for the baby to wear when he/she came over. It was a pink, U of M onesie. We also shared the news with Dan’s parents and gave them a pink hat for our lil girl.

As Jess’ pregnancy continued, she started to have more contractions. On November 15th, after running errands she began having stronger, more frequent contractions. After calling her Dr., who informed her to come in, she made arrangements for Andy and went to the hospital. After keeping her overnight and running tests, they sent her home. After follow up appointments with her OB, she was advised to be on bedrest. So after Thanksgiving, she quit working to be on bedrest. It was one of the most difficult things to do. She couldn’t work, take care of the house, cook/clean, but most important to her she couldn’t be actively involved in the lives of Dan and Andy. Dan needed to work still and since Jess couldn’t care for Andy he went to Mimi and Grandmas during the week and he was enrolled in 2 yr old daycare. Dan transported Andy around, worked full time, cleaned, cooked, ran errands, etc. and NEVER once complained. There were times Jess felt so helpless and like a burden, but Dan always reminded her that her most important job was growing their baby girl. For better or worse, sickness or in health, Dan stood by and supported Jess during this trying time.

On thanksgiving we surprised our families by revealing the name we chose for our daughter. We decided to name her Lillian (Lily). We chose this name because of a scripture passage in Luke 12 about not worrying. That passage reminded us that God has His hand over everything we had been through with Justin and He saw us through. Part of the passage references the “Lilies of the field” and how Solomon wasn’t clothed as beautiful as they are. That’s where “Lily” came from, she’s a beautiful reminder that we have no need to worry because God always provides.

Christmas came and we got Andy a train set which we put together in the basement. That morning Jess went up and down the stairs to see his reaction and play with him. However, the extra activity caused some strong contractions and we ended up in the hospital again. Andy went to Jess’ parents’ house and we missed spending Christmas with Dan’s family and his sister and her family who were in from out of state. It was yet another blow during this pregnancy that could have easily sent us into depression and doubt. But we held fast that it wouldn’t be much longer and that Lily was coming in God’s timing.

It was January 18th, 2:30am and Jess woke up with contractions and feeling uncomfortable. After Jess’ Dr. advised we come to the hospital we arranged for Jess’ parents to get Andy around 5am. 3rd times the charm right? How many more false alarms could we have?! We waited around for a while and Jess was dilated to 4. Around 11am her Dr. came in said we’re not going home again and this baby is coming today, at 36 weeks and 6 days. She broke Jess’ water around 11:30am and the contractions got harder around noon. Jess didn’t want an epidural, if she could help it. The next couple hours were rough. Dan and Jess’ sister, Kristin, were there to support. Around 2pm things got rough and around 2:20pm- Lily was born. Lillian Brooklyn Gordon was here! We were so happy our little girl had arrived. She needed to stay in the hospital for an extra day due to blood sugar numbers, but thankfully Dan and Jess were also able to stay an extra day with her.

Lily is our rainbow baby. We love how it is described:

“A rainbow baby is a baby born after the loss of a previous child. It is understood that the beauty of a rainbow does not negate the ravages of any storm. When a rainbow appears, it does not mean the storm never happened or that we are not still dealing with its aftermath. It means that something beautiful and full of light has appeared in the midst of darkness and clouds. Storm clouds may still hover, but the rainbow provides a counterbalance of color, energy and hope.”

Lily just turned 2 this month and she is so full of energy and life, God has challenged us in so many ways with her. She was quite fussy for the first 4 months of her life and cried most of the day, so she was held most of the time. This was a stark comparison to Justin, who never cried and whom we couldn’t hold until a couple hours before he passed away.

Lily has grown and developed into a spunky and sassy little girl. Andy is so patient and kind to her, despite her attitude. However, she has a sweet, caring side and loves to snuggle up and give hugs/kisses.

It’s very different raising her because we are often reminded that she’s here because Justin isn’t. It can be easy to let your mind wander into the “what ifs”, but reality pulls us back to see that this is what God wanted for us. It may never make sense to us here on earth, but God’s plans are always bigger and better than we could ever imagine. It’s beyond our understanding as to why God chose to take Justin home and then give us Lily. For better or worse, she’s here with us and we are thrilled to see what other blessings God has in store for our family.

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Justin’s Celebration Service

On March 7th, we held a memorial service for Justin at Faulmann and Walsh funeral home. The support and turnout was overwhelming. Nearly 200 friends, family and supporters, some of whom we had never met, came for the viewing and/or service. Following the service we had a private committal service at Cadillac Memoral Cemetery.

We cannot thank everyone who attended and have been in prayer for us enough. At all times; before Justin was born, when he was in the hospital, when he passed and to this day the peace and comfort from the multitude of prayer warriors lifting us up gives us strength. This is not to say or imply we have not had some very low times and that we have not felt broken and like a piece of us is missing but the strength and hope we receive from the Lord in answer to your prayers and kind actions helps carry us through.

Another example of your support is the response this blog has received, to date we have received over 3168 page views from 11 countries. The feed back and comments that have been shared with us are also an encouragement to know that Justin has had an impact on so many peoples lives.

If you were not able to attend and would like to watch the service please click on the below video link.

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Day 6- Justin’s Last Journey; Home to be with the Lord

Unbelievably long night. Almost constant intervention from the nurses and Dr to keep Justin stable. Despite their enormous efforts he is not responding as desired to either the conventional or high frequency ventilator. Blood Oxygen is mostly in the 50 and 60’s occasionally going over 70 and 80 and many times lower. The Dr. noticed his stomach had inflated so they took another x-ray which showed his chest and abdomen were filling with air again. Either the tube that was placed yesterday morning was blocked or it could not keep up with the amount of air leaking. Almost hourly they had to manually extract the extra air to keep the pressure off his lungs.

Jess got to hold him for the first time around 5am but it was brief due to the equipment not being as functional outside of his isolet. Afterwards Jess and I held his hands and head and prayed and cried over him.

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6:00 They are about to start his second blood transfusion since he was born.

6:30 Dr. came in to tell us we did not have long. We desperately wanted our families to be able to see Justin one more time and asked if it was possible to keep him going until noon to allow time for everyone to get to the hospital. We wanted Andrew to have a chance to meet his brother so Dan called his parents who were watching Andrew to come as soon as they could. Of course we wanted Dan’s parent to be able to say goodbye also. Jess’s Mom and Sister Erin were on their way home from out of state and not expected until around noon. Dr said he would do all he could to make that happen but was not optimistic he would last that long.

6:40 Dr. came back and said Justin’s stats were falling fast and we only had minutes and asked if we wanted to hold him at the end. We said we did so Jess and I pulled up chairs next to each other and waited for the nurses to remove most of the equipment he was attached to so we could hold him more freely. All they left was his pain medicine and ventilator. Together we were able to hold him, kiss him and speak comfort to him.

 

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7am Our precious little boy passed from our arms into Jesus’s. His pain and suffering was over. In Mathew 19:14 Jesus says “Let the little children come to me, and do not hinder then, for the kingdom of heaven belongs to such as these.” The only comfort we could cling to was knowing he is with the Lord and one day we will see each other again. If you are reading this and do not have the peace that can only come from a personal relationship with Jesus PLEASE speak to someone. The hurt we are feeling over the loss of our child is not magically gone because we are born again Christians, if fact we cannot imagine being in more pain that we are right now but I don’t know how we could cope with the hopelessness we would be feeling not knowing where our little child is and not knowing that we will see him again. Lots of people have asked us if they can do anything: well, if you do not have this peace there is. Seek out God, go to church, read a scripture, talk to us or someone you know that is saved. I beg you, even if you do it just to appease us, please do one of the things mentioned in the previous sentence.

After the dust had settled the nurse was able to remove anything else still on Justin and we were able to give him a bath. We wanted him to be free of the equipment that kept him alive but also was a reminder of his struggle. We dressed him and held him.

Over the next several hours our families were able to be with us and say goodbye to Justin. We cannot thank them enough for the comfort they brought especially Matt and Kristin (Jess’s sister and brother-in-law) who were with us the whole night through the end. Our parents have also been overwhelmingly supportive, generous and helpful in caring for our dog, Casey, and our little energetic 20 month old son Andy. Andy has helped us to smile after he arrived at the hospital. He is so very precious to us and a little ray of sunshine during our difficult time. One of the reasons we are making the time to write this is so someday he can know who his brother was and remember how strong and brave he was.

Justin had a strong heart, though all the struggles he faced. All the doctors that examined him, even before birth told us that his heart was strong. We know the Lord gave him a strong heart so he could be with us for the short time we had him.
Thank you Jesus for the time you gave us with your precious child, we will never forget him; he will always be a part of our lives. And Justin, our “Righteous Overcomer”, we’ll see you soon.

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Day 5 – Worst Decision A Parent Could Have to Make

Approx 7:30am Dan received a call from the weekend neonatologist telling us Justin had a rough night. They believe air/gas has built up in his chest and abdomen. His vitals were falling (oxygen blood saturation and blood pressure) and could not fully correct by adjusting his ventilator, oxygen and nitrous input levels. The presence of air in his chest and abdomen was confirmed with an x-ray. Dr. Cullen (Pediatric surgeon) inserted a syringe into his chest twice to extract the air but the air built back up. It is not known for certain where the leak is but due to the volume he expects it to be a ruptured air sack around the bronchial tubes between his lungs (medical term is Pneumothorax). The air is creating pressure around his lungs and in his abdomen which is not allowing the ventilator to do its job properly. He is going to put in a plastic tube just under his rib cage so they can express this excess air when needed. The good news is Justin is responding positively when they are able to relieve the pressure. It is 10am.

11am procedure went successfully and surgeon saw an immediate relief in air pressure in body cavity. We have to wait and see if it will be a long term solution until hole seals itself. He was ventilated with a hand bag during surgery. They tried to put him back on high frequency after but he did not respond well to that so they switched to a more conventional style ventilator.

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12:30 blood gas test showed improvement, he is still on conventional ventilator but has a little way to go until he is considered stable again.

1pm He is on a lot of medication and fluids which can affect his urine output therefore they are putting in a catheter.

2:00 Since Justin has been stable for a while the decision was made to transfer him to U of M. There are a few treatment options available there that if Justin gets a little bigger he would qualify for. They don’t want to wait for another event like what happened today to happen again to transfer as it may be too late then.

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2:55 U of M Life flight helicopter has landed.

4:25 After a long process of transitioning all of Justin’s 6 IV drips, multiple monitors, all this tubes and breathing equipment he was put into his travel compartment. It took a little for his stats to recover from moving him and his equipment. He finally recovered and Justin left the St John NICU with the U of M Life flight team.

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5:11 Received call from Life Flight nurse telling us Justin made the flight safely and tolerated it very well. His vitals were all the same as when he left. We were relieved beyond words as transferring him was very risky.

6pm Jess and Dan arrived at U of M and went right up to Justin’s room.

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The doctors were waiting for us and asked us if we could talk about some decisions that needed to be made. We sat down with 4 doctors, 2 Neonatologists and 2 pediatric surgeons. Their evaluation was that the event that happened earlier, the Pneumothorax, was a sign that Justin was in very critical condition. Since he arrived they made some adjustments to his ventilator and were still giving him 90% oxygen and 10% nitrogen which is the highest setting/ help they could give him to breath. Despite this his oxygen blood saturation was only in the low 80’s (should be mid to upper 90’s) and at times dipping lower. This was a blow to Jess and I as it seemed the news that he had made it safely to the new hospital was so positive but what they said next hit us in an indescribable way.
The University of Michigan is one of only a small number of hospital nationwide that has a potentially lifesaving treatment called “ECMO” (Extracorporeal Membrane Oxygenation). Essentially it is a heart and lung bypass machine that allow patients with damaged or under developed lungs with the oxygen the body needs while letting the lungs rest and heal. This procedure was a major factor in our decision to (plan to) deliver here. However, the pediatric surgeon explained to us that he had consulted with the head of the program and several other peers and the consensus was that Justin was too small to attempt this procedure on…he would be the smallest baby (in terms of weight) that they had ever tried it on. Despite that however they told us they would offer it if we wanted to attempt it but again it was not recommended. The likely outcome would be that he would not survive the procedure to connect him to the equipment or if they were successful he had a very good chance of dying or being permanently and very severely handicapped by a bleed in his brain (this is always a possible side effect of the treatment due to the blood thinners the need to use and it increases exponentially the younger the baby is). The only other option would be to continue on the ventilator and pray/ hope for improvement. They were very clear however in stating that whichever choice we made they did not expect Justin to survive.

http://www.med.umich.edu/ecmo/patient/PedECMO.pdf

So there we were crushed and broken and told we only had 1-2 hours to make a decision. As a parent how do you decide which way your child is going to die? The question was not phrased exactly that way but that is how it fealt.

We cried, prayed and called Jess’s mom (a nurse) and Dr. Cullen from St. John who we had gotten to know for council. Kev McKenna, a close friend, pastor and co-worker arrived to support us and help us make a prayerful decision. Finally at 8:30 we decided to continue Justin on the ventilator. We were praying that maybe he still is stressed from the procedure and transport earlier and if we gave him some time he may bounce back like he had done before. Also, we did not want him to “pass” on an operating table, alone and without us. Continuing on the ventilator meant we could possibly hold him (for the first time), comfort and pray with him. When all was said and done we believe we made the right decision. Justin’s nurse that night told us she admired the decision we made, she has seen many families go through similar situations and that this was the least painful and peaceful way for Justin, whether he made it or not.
The next few hours brought moments of hope and despair as Justin’s oxygen blood saturation climbed up and down.

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Day 4

3/1 (Friday am) – Justin’s numbers and settings needed to be adjusted. They adjusted the ventilator to blow off more carbon dioxide, there may be some air in his intestines which could be causing his some discomfort. His oxygen was at 92 or less and needed to be at least 94. He’s taking more breaths on his own, but needs to be sedated more so the ventilator can do its job. He’s on only 2 blood pressure meds now. They had to turn his Nitric Oxide up (yesterday they were able to wean him off it).

3/1 (Friday afternoon) – Justin’s numbers have stabilized and the nurse was able to wean down his 2 blood pressure meds again (I.E. he was at 15/15, then 8/8, now 2/2). He was also tested this afternoon for his blood type in order to get a blood transfusion. They have been taking his blood every few hours to check his blood gases and he now needs some blood.

He had another echo this afternoon which showed lower pressure (which is great news), the PDA (blood vessel which is open) is still present, but the Dr. is ok with that for now. Justin will receive another echo on Monday or Tuesday next week.

Below is some of the equipment and medications it took to support Justin.

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