Our little girl Esther Frances Holtrop was diagnosed with CDH when I was 21 weeks along. I gave birth to Esther at UW medicine April 12th, 2012. Esther's fight for her life began the moment she born. We had many moments we almost lost her. She was transported to Children's Hospital in Seattle and lived for 20 days, passing May 2, 2012. We are thankful for the story that God wrote in our lives and only hope that he gets all the glory in this.
So I think I left off with letting go? Grief is a strange thing. I've experienced loss before and thought I knew what to expect. Totally different when it's your child. My past experiences don't even compare. I loved my grandpa. When he died, after years of debilitating strokes and struggle, I cried for a night and was comforted. When my best friend's little sister, whom I was very close to, passed in an accident, I was lost. It wasn't real until I was putting on a tie for the first time since childhood to be her pal bearer. I broke. I needed comfort, and God granted that. I moved on. When my oldest brother died, I found out what rock bottom feels like. Life lost all meaning in a moment. The night he died, fearing he may have been separated from the Lord, I prayed for God to "somehow, someday, show me a sign that Jimmy is alright and with you." I knew He would answer. I had seen my brother accept Christ and knew his heart, but I needed my heavenly Father to show me. I assumed as I said my prayer , that day was far off. I was wrong. At that moment the entire room was filled with what I call "flaming tongues" for lack of a better term. In the bible in the book of Acts there is a description used to depict what happened when a group received the Holy Spirit Acts 2:3 says:
And there appeared unto them separated tongues like as of fire, and it sat upon each of them.
The room was filled. I rubbed my eyes. Still there. I closed the blinds on the window. Still there. I turned on the light. Still there. I fell to my knees and worshiped. Reassurance for certain, but only the beginning of grief. I knew losing my brother would not compare with prior experience. I just didn't realize the sheer terror of waking up to the reality of it freshly moment by moment. Day by day. Month to month and year to year. I didn't know something could hurt so badly that it grew and blotted out everything else. I read through the bible twice in 3 months. The Word of God lived before me. It was the only thing that had meaning; truth that lives in all generations. So remarkable to see something written thousands of years ago that can literally be seen today. Every sentence holds immense meaning with boundless application.
The first few years marked all the "first" anniversaries. Holidays, birthdays, trips and mile markers of life without Jimmy. The tears slowed and eventually reached the point of rarity.
I thought I knew what to expect if we lost Esther. Most writing on grief, loss and mourning talks of a time of "numbness". I never had that with Jimmy. My dad, brother and I planned on taking it head on. No avoiding, no running. That wasn't Jimmy's style and we weren't about to dishonor his life with that kind of behavior.
I now know numbness. It sounds so harmless. It sucks! I love my daughter and don't know why I am not completely crushed and useless. Its selfish of me, but I want to wallow a little. It just doesn't seem to be God's way with Esther. Instead I am reminded that even meeting her was a miracle. Hearing those two small cries as she was born. Holding her hand telling her "Esther your papa's here. I'm right here honey. Its OK. Your so strong and your papa's so proud of you." 20 days! She died the day after she was born on the machine that was meant to keep her alive. 20 days! I would love to wallow, but can't help but rejoice.
I know I said I was angry when the doctors gave us the horrible news, but I need to clarify. I was not angry at God. I was angry at the situation; if that makes any cense. I was angry because I didn't want to have that responsibility of deciding my daughter's fate.
Now I did have a moment of anger in the following days after hearing about other babies that were doing well. I wasn't mad that they were doing well, I just didn't want to hear someone else's good news. It had no value to me.
It didn't last though. I can't stand being mad. It is just such a waste of time, and makes me feel sick. There is, after all, too much to be thankful for. Now just like at children's hospital, the first few weeks were most painful at night falling asleep and after waking up first thing in the morning. Other than that, I felt alarmingly well. Numbness. Sure there were moments throughout the day, but they were rare.
I guess I expected to be so broken I couldn't function. Unable to get up or complete simple tasks because of the unbearable sadness. Rhonda, experiencing much the same situation, brought up how we had just spent several months preparing for this possibility. We reasoned that for 20days we were on the most intense emotional ride of our lives in the NICU. I know sometimes scripture quotes can be cliche, but it really is a "peace that defies understanding".
Now Rhonda likes to follow blogs and a group of moms that have lost their babies, and we apparently don't fit the norm. A lot of people hurt so badly they are suicidal. 85% of marriages end when they lose a child. I don't find those stories amusing or simple. People's hurt is intense.
Without Christ, without Rhonda I don't know what my life would look like.
Starting back to work was also a shocker. When I lost my brother I found a job that required the least amount of thinking possible. No responsibility for the guy who can't keep it together for more than a few moments at a time. Nursing does not possess any of those convenient traits. That said, the job has not been easier. It is just that being away from my wife, having the potential of a loss of control, has been hard. Days have been darker. While at work the first few weeks, I missed Esther more than ever. Although there are places to slip away and have a moment I am fearful of what might happen if I allow the "dam" to break at work. How I could continue through the day after losing it and just slip back into the flow with a snotty nose and red eyes. How I would have to explain to patients, doctors, coworkers.
Thankfully that is easing. Since Esther's funeral, memorial day and other "big days", the numbness is slowly fading. I have had several blowouts and it is soul shaking. I am glad just to know it is there and I'm not fearful of the reality. I see God's beauty and grace all around me. I assume this is only the beginning of our mourning and grief. That's alright. Esther is worth every tear, cry, sob, and groan. All grief is individual and personal. No one knows yours. Just as you can know no one else's. We may experience similar things but at different times and for different periods.
For far to many CDH parents, this is the rest of the story. Life does go on whether we are ready of not. Trust in the Lord your God with all your heart, mind, body, soul and strength. Everything else is just a waste of time.
Jason
to be continued.........
Been quite awhile now since I have written. I have both feared and looked forward to it. There have been amazing moments of peace and grace, painful empty moments and days, and a lot of "blah" nothing is wrong/nothing is right days in between.
Losing Esther has been frighteningly peaceful. I say that to express the concern I have for Rhonda and I both as we have had so many days since losing her that we haven't cried or experienced the terror I would have anticipated.
I'll give you a quick recap: On April 12, 2012 at 3:32 PM PST, I fell in love. A miracle occurred before me. A precious life like none other entered into this chaotic fallen world. Esther Frances Holtrop was born with a couple peeps of triumph from a body not strong enough to sustain itself. Doctors quickly inserted tubes and lines, attached probes and monitors, and Esther opened her eyes with a questioning gaze.
The next 20 days were a frenzy of panic and anxiety covered in the unfailing Grace of God. Referred to as a "very sick little girl", Esther was visited with innumerable miracles. Every day was a test of technology, medical knowledge and skill, and most importantly faith in the One True and Living God, Jesus Christ.
So many cried out to God on our's and Esther's behalf. God continually answered with our desired outcomes. Young, old, believer, non-believer, friends and strangers all praying to the God of all creation. Yet another miracle.
On Esther's 20th day of life she was given a challenge. The medical staff was remarkably upbeat and optimistic. They saw improvement and capacity in her lungs that they had not expected, and due to continued bleeding, needed to get Esther off the machine that kept her alive.
We spent the morning without considering the worst. After all it was simply a trial to see if she could be maintained with other drugs and equipment that would not require blood thinners.
9:30 AM was the planned trial. 10:30 AM I was asked to come talk with the surgeons. They sat me in a private room stating it was due to maintenance on the normal briefing area. Rhonda was preparing to pump breast milk and was intercepted being led in to me. We looked at one another knowing maintenance or not, something was not right.
Staff including nurses, surgeons and other doctors filed in with tissue in hand. I held Rhonda's hand as they told us "The trial did not go well. Esther's lungs are not able to support her off ECMO(bypass/life support). The bleeding is too substantial and her needs for blood products too great. Even if we were able to sustain her on ECMO 1-2days or more longer, she would not be able to develop enough lung tissue to survive. We have done all we can."
We sat there in terrifying silence, waiting for them to say something else. I finally asked what was next. They responded by giving us our options of how Esther might pass. We could take her to the operating room and have the ECMO catheters (tubes in her neck that ran to the bypass machine) removed. But that she would likely pass before they finished closing the incisions. Alternately they could keep her on ECMO and allow us time to hold her and say our goodbyes.
For the first time in this entire journey I was pissed off. I wondered at how I wasn't sad or grief stricken, just mad. Not mad at God, just mad at the choices. "How do you want your daughter to die?" Did it really have to be my choice? What kind of choice is that? How can a father decide their child's death? I didn't want to limit God. I wanted them to try again. I realized that removing the catheters only meant we would hold her lifeless body without tubes. We chose ECMO.
We made the most difficult phone calls of our lives to family, and went to be by our daughters side.
WARNING: I am about to discuss Esther's death and condition leading up to it.
majority of it is a description of our state and how we worshipped God in it, but there are descriptions of Esther and they might be too much for some.
By the time we left the private room and headed for the NICU I was no longer angry, just distraught. I could hardly believe I was going to say goodbye to my precious baby girl. There is no way to prepare for that. When we got to her room, they had already moved her room mate to another room. Sobbing, I held Esther's hand and let her know her Mama and Papa were there, and Jesus too. I could see there was dried blood on the tape that held her breathing tube and on the corner of her mouth. Although peaceful, Esther looked uncomfortable. I told her how proud I was of her, her strength, beauty and how much we loved her. Then I sang to her.
My dad and brother were on their way, as well as Rhonda's parents and sisters with their children. We were asked about clothes for Esther. We had brought a dress for her when she was born, but had since grown comfortable enough to send it home with Rhonda's mom. After a trip to the car for clothes, blankets and hats, family began to arrive. We played a CD that Rhonda had made for all our friends and family that had been supporting us to remind them to pray. We took turns at Esther's side, sang, cried, prayed poured our hearts into her.
After everyone had had time with her, the family went to the waiting room and they brought a couch into the room for Rhonda and I. A photographer from the charity Soulumination came and we waited on the couch as they removed Esther's breathing tube and other non essential lines. We had seen glints of red in her hair since birth, but her hair had always had gel from cranial ultra sounds or something else that darkened it. As they carried her to us I broke again as I saw just how beautiful she was. Her hair was a gorgeous strawberry, her mouth and cheeks swollen but adorable. Our daughter, perfect in appearance, but without the ability to survive in this world.
How could it be that the first time I would hold my daughter was also the last time?
We held Esther for a couple of agonizingly joyful hours. We thanked the Lord for every moment, sang songs of praise and worship over her, and smiled, laughed, moaned and rejoiced.
Although Esther was receiving medication to mask the pain, it became apparent that it was time to let her pass. To give her up to Christ.
They turned off the ECMO machine and cut the tubes connecting them in a loop. We watched as she breathed her last breaths and passed on to Glory. We prayed and told Jesus "she is yours, we give her back to you."
We bathed her and swaddled her, leaving with an absolutely unexplainable peace. I cannot say I have proof of our triune God, or the heavenly afterlife He has promised, but I KNOW He is real, and I KNOW Esther is with Him in heaven. Now no one has questioned how I know this, and if they did all I could say is "I just know." Trusting in the Lord does not require proof, or tangible evidence. It requires faith; trusting in something you cannot see, hear, touch or experience. There is ample evidence of our God, and many choose to attempt to explain it away. Some question, if there is a God how could he allow evil and death? The answer is free will. If God were to play the puppeteer and orchestrate our every moment, we would be forcefully brought before him. It is our choice. We are Christ's bride, not his battered wife made to bow before him and worship him out of compulsion.
It has now been about a month and a half since Esther went Home. We celebrated her at our church after burying her next to my brother Jimmy. What a blessing to be able to praise God in the midst of losing her.
Now looking back, I remember a meeting with friends before Esther's birth. They have a son that had been diagnosed with CDH after birth and is now a very healthy young boy (12or 13 I think). His dad told us he was excited for us. Hard to hear when you are expecting a battle of the ages for your child's life, but taken as a blessing. I took it as when we go through trial of this nature we are left with few choices. We can choose to be strong, try to pretend its not so bad, cover our emotions with distractions, drugs, alcohol, entertainment, work. Or we can lean into the Father. The first produces more pain, hardship and simply prolongs the agony. The last opens the door to a relationship with the Almighty that in indescribable. When we have no power or choice in our lives, if we trust in Him, God draws so near you can almost smell Him. To say you "feel" His presence is inadequate. The experience is like floating. To be carried in Christ's arms through your trials and burdens is like flying above them. The difficulty seems almost foreign or separate and God's love consumes, engulfs and covers.
I would not elect to lose my child to grow closer to God. I am selfish and want to have her until I die like many parents do. I do however, rejoice is what God has done in the midst of losing Esther. I don't for one moment, believe God "did this to me". God set the world into motion, made creation perfect. Than Adam ruined it all. I know it won't happen in heaven, I just won't care, but right now I'd like to kick the crap outa that guy. Sorry, got off track. So God didn't deliberately say "I'm gonna teach Rhonda and Jason a lesson." He did, however, make a blessing out of our tragedy. He made an ugly, terror filled trial, beautiful. Thats all I got today. I'll keep up more routinely now. Catch you up on what CDH is for our 50%. Here is yet another song to illustrate our time with Esther and our lives in general.
Just click on the play button above and you can see the funeral clip/video we created for Esther's funeral.
It's hard to find the words to express what we have felt in the last three weeks since Esther has passed. Most of our time has been spent praising our father for the most amazing gift ever, 20 days with our beautiful daughter. We have come to realize how blessed we truly were for those 20 days. For those of you that weren't there experiencing what we were, every day was extremely fragile for Esther. We knew Esther was really sick, but didn't really know how bad it was until we looked back at it all and realized how many times we almost didn't get another day with her.
I remember giving birth to her thinking that was the last time I was going to see her. I felt so much joy seeing her held before my eyes by the doctors and hearing her make two little crying sounds out of her mouth. I was thinking, "if that is all we get, that is the most incredible thing I have ever heard." I remember back when we had to put her on ECMO. Within a few hours her life was hanging before our eyes again. Her heart had stopped along with the ECMO machine and we were crying out to the Lord again to save her. Each time she fought back and we gained more moments with our little Angel. I remember praying at the beginning and saying, "Lord, I thought you were going to take her home. I don't know how much of this up and down I can take. I don't know if I am strong enough. Give me the strength to make it through this fight with her." I was so scared at first to get attached to her in case she went away so quickly. All I can do now is thank the Lord for giving me every one of those 20 days. I needed it. Without Jason knowing it, he patiently taught me, through his own example, to stand strong in faith and prayer, fervently trusting the Lord that she is ours right now. To give everything you have. He gave me the courage to stand by her side, unafraid. To simply stroke her hair, whisper I love you and to just hold her hand and whisper prayers over her. I was terrified in this process with how swollen she looked. Each time I tried, I'd break. Tears would flow and the words just couldn't come out. I was so afraid I would have to see her die. Many times I would wait outside the door while the alarms screamed, panicking while Jason smiled at his new love. He would just sing to her in the midst of the chaos. Tears streamed down my face as I watched him fall more and more in love with Esther in every moment he got with her. Every morning I saw Jason's face light up just getting a glimpse of our little girl. He was the one who taught me how to be still before the Lord and wait before him. For he had chose us to take care of Esther those 20 days. Thank you Father for Jason. In more ways then one, for knowing the exact person I needed in my life to get me through those days.
Each day the Lord gave me more strength to face the day. Skipping forward to the last few days with Esther now. We felt an overwhelming presence of peace and comfort of the Lord over us. The last two days with Esther went so quickly. The doctors had noticed a small amount of blood forming under her huge incision on her stomach. They needed to reopen that area of her stomach. I remember being at one of my lowest moments with Esther during this time. We knew that each procedure was critical. Not until we had the social worker discussing what our plan is if we loose Esther, did we realize how bad she really was. I had just gotten done pumping and cleaning my equipment when I walked in on the social worker discussing with Jason if he thought Soulumination should come in to take pictures with us and Esther in case she didn't make it. My eyes looked like they were going to explode. I didn't understand why she was talking this way. I thought things were okay. She informed us then that she may not make it through this procedure.
Jason and I waited in the waiting room with tears streaming down our face as two ladies across from us did the same thing. Each family waited as we did to hear the results of surgery. It was all to familiar to us. Each face says a different story. But we all wait and hope that things are going to be okay. A doctor came up to those two ladies saying, "The brain surgery went well. In fact better than we expected." The ladies gathered there thoughts and tears, but kept glancing towards us as we sat holding each other. We cried knowing we could be saying goodbye to Esther at any time. They both got up within moments and said, "we are so sorry to bother you, but we wanted to know if we could pray for you." Our hearts jumped, and with tears streaming down all of our faces, we began to give our worries and tears to the Lord. Soon after, our surgeon came in saying they were hopeful again. That the blood looked like old blood. They found no active bleed, only clotted blood. We were hopeful once again, and thanked the Lord for another miracle that he had performed before us.
Jason and I rushed into Esther's room as soon as we could and gave thanks to the Lord together with Esther for saving her again. A few hours later as the oscillator was shaking her to loosen up the lungs and get them to open up more, Jason noticed blood starting to come out of the incision again. They would bandage it up with a little gauze and no worries would come of it; or so we thought.
Later that night my friend Cynthia came by to see Esther. I went into the room to show her sweet Esther, and the nurses wore concern all over there faces. I asked them if it was okay for us to see her. They said yes, it would need to be quick though. They needed to go back in to the incision and pack it with gauze and a drain tube to drain the blood. I found Jason soon after and said "you need to get in there and see Esther right away, they are going to do another procedure." There was concern at this time with the bleeding. Being on ECMO, they have to give Esther blood thinners. In order to stop the bleeding we were going to have to get her off ECMO.
That night at 2 am we received another phone call. They had to open up her incision a little again with a fresh attempt to stop the bleeding. We fell asleep again from exhaustion but with a heavy and sad heart. That morning we went to 8am rounds with the doctors. There were about 25-30 (more than normal). They had smiles on there faces as they showed us how much Esther lungs had opened up over the night. They were hopeful and unusually optimistic to trial her off ECMO. It needed to be done in order to stop her bleeding. Jason and I felt so confident and at peace with this news. We got our breakfast, opened up our bibles, prayed with our pastor, sent out prayer chains, you name it. The procedure was going to start at 9:30 am. At 10 I went to do my daily pumping. I had just finished washing my pumping supplies and headed down to the breast pumping room. I asked the desk ladies for permission to enter the pumping room and they asked me if I had seen my husband Jason. He was looking for me, and the doctors wanted to speak to us. I couldn't find him at first, but his head came out of a room that I was unfamiliar with. My stomach went into knots. I knew something wasn't right. I asked him why we had to be in the private room and he said because the other one was getting worked on. We both felt something wasn't right. Moments later the doctors and nurses came in with disheartened faces and said, we have tried everything, but the trial off ECMO did not work and she is not able to make it without it. Jason and I were shocked. We couldn't speak. There were no words. I looked at Jason for him to speak. We could barely spit anything out. They had tried everything and there was nothing else they could do to save Esther. They could not stop the bleeding and her lungs were not strong enough to come off ECMO.
We called our family and sent out texts for those that could to join us in saying goodbye to Esther. Our hearts broke. We got 6 more hours with Esther saying goodbye. We sang and prayed over our little girl. We got to be in the same room with Esther as she went to meet her Father, Creator and Savior. It was the most beautiful thing you can imagine. In fact, I think we are brave enough to include a clip of us praying over Esther hours before she had passed. We worshiped together, prayed together and rejoiced in the gift the Lord had given us.
I am going to leave the rest of the story to Jason. Esther passed on Wednesday May 2nd at 5:58 pm. We all hurt for the loss of such a special girl. But we rejoiced that she was no longer in pain. That she is being held by her Father and dancing in heaven.
Her funeral was on Friday the 11th of May. That Sunday, Jason and I flew to Mexico to begin our healing process. I can personally say that I continue to feel the Lord's presence, peace and comfort in this time. There are times of crying and missing our little girl but we feel joy in the midst of it all. We will spend the next days, months, to years processing this. In blogs, prayer, quiet times, worshipping, rejoicing and grieving. This is a wound we will never heal from, but with Christ can learn to live with. I came home with a lot of peace and understanding. While reading a book called "A grace Disguised" by Gerald Sittser, a man who had lost his wife, daughter and mom all in one car accident, I have found some comfort. I will share a little bit of it here: Its a long quote but of so much value "we have the choice to choose the direction our life will head, even if the only choice open to us, at least initially, is either to run from the loss or to face it at best. Since darkness is inevitable and unavoidable- we need to walk in the darkness rather than try to outrun it, to let experience of loss take us to a journey wherever it would lead, and allow ourselves to be transformed by our suffering rather than thinking we can avoid it. We need to choose to turn toward the pain, however faltering and to yield to the loss, though not knowing at the time what that will mean."
Right now, this loss is beautiful. We are experiencing life like never before with our Savior carrying us above it all. We are experiencing new things as meaningful to us, but maybe used to not be. We get to experience the joy of birth and life in a whole new way. We are learning to not take life for granted. That having a healthy baby is truly a miracle. We are learning to be more sensitive to pain and not as oblivious and selfish as we used to be. We get to feel the Lord wrapping his arms around us with peace and comfort and the hope for better days to come. Lastly, and I may say this a million times, we can't wait to experience the joy of another child. Our daughter Esther has her reward! In heaven, right now! We can hardly wait to receive ours and hold her in our arms again.
Sunday, May 6, 2012
Picking up my twin sister Rachel at the airport. She was coming for a week to be with us and Esther. We decided to have a little fun in the midst of our hard week by dressing up and surprising her.
As Esther's funeral is coming at the end of this week, we thought to ask you - "How has Esther impacted your life." Please reply by including this in a comment at the bottom of this page. Jason and I have received numerous responses from people we know and complete strangers on how they were impacted by our sweet girl Esther. It meant the world to us and now we want to share some of those replies at the funeral. If you remember early on in my beginnings of this blog I had posted something that my sister wrote me. It said, "Rhonda, if God asked you or told you I am going to have you sacrifice something and by doing so people will come to me." "Would you be willing to do it." My sister said, "Rhonda, I know without a shadow of a doubt you would say yes." We know that people's life's were changed, by praying for the first time, renewing there prayer life, accepting the Lord into their life and having faith and trust again in our sovereign Lord. Please take the time to share with us how Esther has impacted your life. Thank you so much.
http://vimeo.com/10868953 click link at left to view video testimony by John Mark McMillan
I think this kinda sums up our feelings throughout this trial. You can easily find a full version of the song on itunes or youtube. This song has been dear to us since we were dating and we walked down the aisle to it at our wedding. Rhonda and I have had our own individual "messy" times in our lives where He has loved us through it all. How awesome is our God, that He would step into His own creation as a created being, only to receive ridicule, beatings and finally give His life through crucifixion upon a cross by those He came to save, all to atone for our short comings and sinfulness.
He loves us! You are included in that "us". He died for me, personally. He died for Rhonda, personally. Your sins were forgiven, as were mine, by His sacrifice. No greater love exists.
We are by no means done with this blog, but I hope you can understand our need to take some time.
Our dear Esther went home to be with our Lord Jesus Christ today. We do not mourn for her, but ourselves and the empty place in our hearts. We can have complete confidence that she will not suffer, struggle or worry at home in His loving arms. Blessed be the Name of our Holy and Awesome God!
Fragile. Not just Esther, but us as well. Had a few moments this morning where I was ready to crumble. Strength that is unexplainable holds me up. In a world that encourages us to trust in ourselves, "look out for #1", and you need to take care of you, God is the only lasting and unbreakable strength.
Since surgery seemed to go over without issue and the days since have been relatively event free, I think we kinda let our guard down. We maybe stopped depending wholly on God and began to "lean on our own understanding".
There is such a valuable lesson we are learning. Staying diligent and allowing God to "be God" is the struggle. He shines through and it is blindingly bright, but so easy to turn our backs and look to ourselves. Proverbs speaks abundantly about "sluggards" and those that are "diligent". One worthless and wasting talent, the other prosperous and glorifying God. Sometimes that work is not physical, not witnessing to unbelievers or working in the church, but staying focused on giving up your life completely to God.
As for Esther this morning, I am comforted. One step at a time. Staff actually seemed a little more concerned with Rhonda and I this morning than the events to come with Esther. God's grace pours from them. The doctors now are planning for 12:30ish.
I don't write this blog to convince you that Jesus Christ is Lord. That is not God's purpose either. We have all been given free will. God does not force us, like an abused spouse, to love Him. He gives us the choice. I really just want to share how God makes my life joyful. How, in my weakest and lowest place, He meets me and lifts me above it all. God gives my marriage it's strength. God makes my job a privilege. He makes struggle and trial meaningful. I fail and fall short, but He loves me and forgives me without end. I want to be more like Jesus. I want to love unconditionally. I want to trust in our awesome God.
The doctors have been watching Esther's tummy today wondering why it is swelling. The latest is that they believe it is bleeding between the patch holding Esther's stomach contents in and the skin. The current plan is to open her incision and clean out the space tomorrow morning. With this, the doctor told us there is a possibility that the bleeding will not stop related to all the blood thinning agents used with ECMO. If that is the case they will have to take her off ECMO. That would be great if she shows that she is ready. If not, we would have no choice and that is when things get really scary.
Rhonda and I have definitely been struggling with fear and anxiety today. Change is difficult to process. I had to fight to focus on Esther today and not on the monitors. I wish I could always say that I have given it to the Lord. It is just so hard to completely let go and allow Him to reign and rule. As I have said before, nothing I can physically do. I am praying. God is listening. I do trust Him. He is good.
