The final post but not the finish line

It’s hard to know how to write now, or what to write. We really want to thank everyone for your prayers, thoughts and support through this time. It is such a comfort knowing that there is a community around us praying for us when we can’t, putting food in our fridge and just sitting with us during this time.

Good friends of ours lost their son last year too early as well. I wanted to share something she wrote during the time after they lost him. 

“People always want to know if you've healed after a few weeks have passed.

The thing about trauma and loss is that the term "healing" is relative. You don't heal, you are changed. You live with the fact that there is forever a hole in your heart that cannot be replaced. You walk to a different cadence, you pray different prayers, and you are totally and completely a different person.

Yes, God redeems. God heals. But it's not all promised right now. Until that day, you learn to walk with a limp.”

During this week after Hailey has gone we have reflected on so many different things. We want to share so many thoughts with you and where our hearts are at (watch out it differs every day). Through all of the legalities that we have to navigate (birth and death certificates, meeting with funeral home, social security, insurance issues, etc.) our hearts have stuck on a couple thoughts.  These thoughts were thoughts that were milled over a couple years ago with a close friend and mentor. Little did we know that years later we are finding ourselves coming back to them and rooting ourselves deep in the truths of them.

The first thought is the concept and theology of the ‘already but not yet’. When we accept Christ as Lord, we are promised to be a new creation, a new being. We become one with Christ and through his death and resurrection we are free from the condemnation that all of us deserve. We get to live right now in the freedom that Christ so freely offers. But we are not yet finally and perfectly free. That will not happen until Christ returns and declares final victory! This is a great article by John Piper about the topic. http://www.desiringgod.org/articles/already-decisively-and-irrevocably-free-not-yet-finally-and-perfectly-free.

Jake and I find ourselves living in this beautiful mess. We have been looking and searching scripture to find/read and familiarize ourselves with the glory that Hailey is in, and finding so much joy and comfort in knowing that we will one day be there too. Our hearts dance thinking that Hailey is with our five other babies we have lost and yet our hearts break a thousand times over knowing we won’t get to know Hailey’s heart or what makes her tick. I think we have been given a glimpse of what God feels like.

The other thought is that we as humans, created in the image of God, were created for intimacy, transparency and vulnerability.  Jake and I feel this so much. Our feelings differ each day. Some days are excruciatingly hard, and others are joyful. We are beyond grateful for the community that surrounds us and we are both scared and excited to re-submerge into our daily lives. We are scared to forget Hailey, scared to be needed by others to grieve, and just scared. But we are also excited. Excited to be with our church family again, excited to be living life again with the people that we love, and excited to be with Mason this summer.

So in an effort to maintain this intimacy that we crave Jake and I want to be transparent and vulnerable with people. We have thought a lot about what that looks like with others and we have come up with a few ideas that would be really helpful in our process of moving forward with everyone.  I, Amy, do really well with more specific questions. I don’t do well with vague questions (“how are you doing?”) I will probably answer just as vaguely. Truly, ask me anything. Just be prepared. Jake does better with no questions asked. If he wants to share, he will. If we randomly start crying with you just go with it as this is something that has changed our life and we are learning how to walk with a limp.

We are so grateful for the space and time that we have been given to grieve together as a family. We aren’t done grieving but are ready to be with friends and family.  We feel carried by Christ and given His strength to continue on this road. I am sure at some point we will try to make it on our own strength and I pray we can be pointed back to needing His strength to carry us. We love you all and thank you for going on the journey with us, hang on though because it isn’t done yet –See you soon!

12 sweet hours

As we held Hailey Joy in our arms we got to give her over to our Lord. All day we kept praying and telling Hailey to rest in the Lord. They took her tubes out in our arms and we got to spend time as much time as we wanted with her. We got to pray over her, sing her brother's favorite Lullaby to her, hold her and kiss her. We are so thankful for her hard fight and that she was able to go  when she did. Our hearts and minds are filled with thankfulness, joy and sorrow.

We were praying for God's will to be done, and it has. As much as we don't understand about it now we trust it and continue to seek out what it is.

Thank you everyone for your prayers and support. As we spend this precious time together as a family we will reach out when we are ready.

WE LOVE YOU ALL!!

Hailey Joy

*Our sweet Angel Hailey Joy was born this morning at 5:48am.
*Amy started contracting at 3:30 am and was able to deliver naturally.
*She weighed 750 grams (1 lb 6 oz)
*Jake was able to stay with Hailey the whole time.
*She is still fighting for her life right now.
*She has a hole in her right lung.
*Because of the hole she was without oxygen for a half hour and was given breathes for three hours. Her heart stayed beating the whole time during breathes.
*She was unable to exchange gases for those three hours.
*Initial brain ultrasound showed no brain bleeds, but is at a very high risk of one in the first 24 hours of life.
*Waiting for neuro-scan to check brain activity.
*Currently is stable on all machines.
*She has a catheter in.
*She will be getting a PICC line soon because the vein in her umbilical cord is weak.
*Our constant prayer is for comfort, wisdom, and rest in knowing she is being held by her Father in Heaven.
* Amy's placenta did not detached, she was rushed into OR for a D&C.  She is in a recovery room now.

"Boring Days"

     Having a loved one in the hospital for most can be a very challenging and emotional time. When we often reference life's journey in the hospital many thoughts and feelings turn toward past pains. The hospital is a place that can mean the end of a book for some but, it can also mean a new chapter in life or, what we love most, an entirely New Book! Living the journey with someone in the hospital with no injury, ailment, or emergency can feel like a life in limbo. Amy is currently in the hospital in anticipation for an emergency yet to come. Well...for the most part.
     The doctors that we meet everyday (as many as 12 in the room at one time) are convinced that this pregnancy will end in an emergency c-section (or if our baby comes naturally)  having our baby in a state of care that I can't even begin to describe. This limbo that we live in, is one we voluntarily asked for. At 23 weeks and 5 days of gestation we told our primary doctor that we were ready to admit Amy to the hospital to be monitored, cared and fought for. Fully knowing and hoping the hospital would become our new home until late august. Forced to leave our son with grandma, grandpa, and all the aunties and uncles(which has been far more upsetting for us than our son). Trusting the docs who believe that if we control Amy's environment we can keep the baby in the womb. Many days have been spent trying to reduce the amount of movement and stress for Amy. Doing whatever we can to give our baby a few more days in the womb. Although we spend most of our days having "boring days," a phrase used almost every morning by the doctors, they have not all been in boredom or without minor emergencies.
      Most recently Amy has spent more than 12 hours laying inverted to take the pressure of her umbilical cord and another work up to prepare for delivery(Fluids, Mag-sulfate, antibiotics, monitoring, exams, ultrasounds to see how baby is looking, etc.). Monday morning right after midnight the baby's heart rate started suffering. The baby's umbilical cord is between the cervix and baby's head. With every small contraction the baby pinches its cord decreasing the heart rate trying to force the cord out of the cervix. The remedy, lay inverted and let gravity work. This was a really hard time for Am, as I left for home earlier that day to spend time with our son leaving Am to brave the whole work up by herself. Only because we have amazing parents who once again graciously took our son, was I able to come back down to find Am totally spent. The roller coaster of "boring days," only 30 minutes  allowed outside a day (in a wheelchair), and minor emergencies had finally caught up with her. This journey (by the way...kinda tired of that word!) is still in its infancy and has many more hurdles to come. With every hurdle Am and the baby have been able to win small victories. Including for now the one just described. Although the cord is still stuck in between the head and the cervix with the possibility of the cord popping out of the cervix at any time, the baby is still once again adjusting to the new normal of laying down most of the day to relieve contractions and stress.  With every victory, given to us by our Lord, we are given new strength to continue. We find ourself willing to endure a few weeks, months of "boring days" living in limbo to have a life-time with another beautiful child.

Jake

A Mighty Fortress Is Our God

The title to the blog post is a lyric of one of the songs I frequently pray. It is a comfort I take with me, alongside of Psalms 31, in these longs days.
Psalms 31 starts by saying "In you, O Lord, I have taken refuge; let me never be put to shame; deliver me in your righteousness. Turn your ear to me, come quickly to me rescue; be my rock of refuge, a strong fortress to save me. Since you are my rock and my fortress, for the sake of your name lead and guide me." It goes on to talk about how my life is consumed by anguish and my strength is failing because of the affliction  I am in, and how my bones grow weak. At the end of the Psalm it declares "BE STRONG AND TAKE HEART, all who hope in the Lord."

These days are long. My body is getting weak, and the stability of our emotions are rocky. If you have been following or read any of the previous posts you know that this past Tuesday night by body started shutting down in the form of bleeding. Jake rushed back down to UW as he was in Oak Harbor with Mason. It was a long 40 something hours of getting ready for a delivery of our baby either from my body deciding it could no longer hold our sweet angel in there or by an emergency c-section. Signing all the consent forms for surgery,  speaking with neonatologist about our wishes, getting prepped with IV's and moving into labor and deliver room right next to OR all were just small parts of what was happening. By Thursday afternoon my bleeding had lowered and my body was seeming to tolerate the amount of blood lost with out forfeiting the baby being taken out. The baby decided it could get used to a new normal and the baby's heart rate was seeming to tolerate everything that was going on. By Thursday night, they had taken me off IV,  continuous monitoring, magnesium-sulfate( helps protect the baby's brain in delivery), and moved me back into my original room.

Friday was spent catching up on sleep and trying to sort our emotions. During our meeting with neonatologist we spoke a long time about the reality of our baby having some sort of disability. We were having a hard time deciding if we were going to share any of that on this blog, but we need to put our selfishness aside and allow God's will to write the story.  Trying to grapple with all the numbers and statistics is really hard on emotions. We would, of course, open our arms wide to the child the Lord wants for us, but we weren't ready to have real conversations about what that would  actually look like.  We want to be prepared, and still have hope of a super healthy child. Just another huge topic to put in the "We will see what the Lord wants to do with that" category. We also were offered to take part of a study called the PENUT( Preterm Epo Neuroprotection) Trial.  We are still trying to decide if we want to participate. Anyone know of this? or have good information on it? We feel pretty educated on it, but still praying about what is best for us.

Saturday morning Jake and I had big plans.  WEEK 26!!!  It was time to celebrate. Mason was coming for the day, we were going to take him on another walk to the water. He could ride in the wheelchair with me and the two of us were going to try and convince Jake to stop at the HUGE, YA HUGE, fish tank. We woke up earlier than normal so we could shower, I could monitor in the morning, and we could be ready to go when Mason got here. Our sweet baby had other ideas. The baby's heart rate was showing signs of great distress due to the cord. The baby's heart rate could dip due to contractions that it couldn't handle, due to the placenta insufficiency, OR the umbilical cord could be getting squished somewhere due to no fluid( the last one is what was happening in this case). We tried moving positions to get baby's rate to stop dipping, we tried almost everything until the doctors said that it was time to start getting ready again. HERE WE GO AGAIN.... I was hooked up to continuous monitoring, IV, magnesium-sulfate, and went through the whole process we had just gone through a couple days earlier, only this time it was from the baby and not my body, talk about adding a different and new worry. By 6 pm last night the heart rate seemed to once again stop showing signs of distress and everything stopped to just watch what the baby would do. By 5:30 am this morning it was time to get off everything and try to let this baby become stable without delivery. I had one monitoring this morning for an hour and heart rate looked good.

So here we sit again. I asked doctors how many times they would allow this to happen before they actually deliver. The conclusion was that, if the baby can become stable in the "new normal" situation, they would do it numerous time because baby is still at such a young gestational age it is worth keeping baby in the womb.

As we continue to wait we plea to our Lord for strength, specifically His strength because we all know he never grows tired or weary, for a hiding place in Him, His mighty fortress,  and a safe refuge physically and emotionally we can rest in.

For now, BE STRONG AND TAKE HEART for the Lord has overcome this world!

Amy

Hi!! It's Amy

Hey Y'all, it's Amy! Well the past 40 hours has been another realization that as much as I want to be in control, I AM NOT. I just got off continuous monitoring now, freedom!!!! I am still bleeding but so far my labs show my body is doing ok with blood loss thus far and baby still is fighting away in there with a pretty steady, some dips, heartbeat. Again, nothing too low for them to say that the baby would be safer outside of me than in. So here we sit, another waiting game. They will continue to measure blood loss and baby's status. I am still in a pretty fragile state but again am trying to find hope and peace in God's greater plan. The contractions that I  am having are not consistent enough to go into any type of action.
So here we sit, 25 weeks and 5 days today. I will go for an ultrasound in a little bit to measure baby's growth and blood flow in the cord. We will see what that says and once again go from there.

Update may 13

Brief update:
*Amy started bleeding last night around 5pm.
*She hasn't lost enough blood yet to be considered dangerous and in need of emergency c-section but she is on her way.
*We moved rooms to a labor and delivery room right next to operating room.
*Amy has started to contract but nothing strong or consistent.
*Baby seems to be tolerating blood loss alright. With some contractions the heart rate drops pretty low(60's) but because the contractions are not consistent the baby is tolerating alright.
*Prayers for strength for Amy as she hasn't slept all night due to monitoring,blood work, and IV's.
* Prayers for God's hand to be at work and for guidance and wisdom for doctors and for us.
Will update when we can