Pray for Elle
Elle Elizabeth Minor from Jeremy Minor on Vimeo.
We are asking all of our friends to pray for our newborn daughter Elle Elizabeth Minor. Elle was born May 21st, 2008 and is having heart complications. She has been sent to University of Virginia hospital for further tests. Please pray that God would heal our daughter's little heart.
Our Hope
"I formed your inward parts; I knitted you together in your mother's womb. You are fearfully and wonderfully made, my works are wonderful; Your frame is not hidden from my sight when I made you in secret, intricately woven in the depths of the earth. I saw your unformed substance and in my books were written the days that I formed for you, when as yet there were none of them"
~to Elle from your Heavenly Daddy
The Situation
The Cardiologist met with us last night with a preliminary diagnosis. There are two problems in Elle's heart. The first, less severe, problem is a condition know as VSD. This is when the septum wall that separates the 4 chambers of the heart does not develop fully. This causes a mixing of the blood and can create oxygen problems in the blood flow. The second problem is that when her heart was developing the main valve known as the aorta got pushed to the side by the pulmonary valve. Because of this the pulmonary grew larger and the aorta became extremely underdeveloped. Her aorta is not large enough to sustain blood flow to the entire body and therefore is working the pulmonary valve harder to keep up. Currently the team of doctors is meeting to discuss options from here. We know that Elle is going to need heart surgery to correct the problem and continue to ask you to bathe our daughter in prayer
Elle Elizabeth is HOME!!!
Today was the big day. The first time outside. The first time in a dress. The first ride in a carseat. The first time sleeping in her new crib. Today has been a busy day for little Elle but we are excited to tell everyone that she is now sleeping in her own crib at home. She is doing so much better with her eating. The doctors moved her to eat every 2 hours and she has done great, taking about an ounce and a half at each feeding. She gained weight for the first time since surgery over the weekend and the decided today was the big day. The cardiologist met with us yesterday to tell us we would be leaving today and said that on a scale of 1 to 10 for infant cardiac surgery Elle's recovery was a 10. We know this is because of our God watching out for our daughter and using your prayers in our life. We have a string of doctors appointments coming up so they can check her heart every so often, including a visit to her pediatrician tomorrow morning. Tonya and I cannot thank everyone enough for your gifts, messages, words of encouragement, and most of all prayers for our daughter. In the coming weeks we are going to throw Elle a big welcome home party and would love for anyone of you to come up and see the little miracle that you have been praying for. Soon I will post the date and time. We just want to celebrate God's goodness with all of you. I've also included some pictures of her at home. Thank you so much again, the body of Christ is a beautiful thing.
6/5/08 Update
Well not much has changed since the last update. We are still on the floor and still waiting for Elle to eat. She began to make a little progress but will only take close to 1oz. of milk. They want her to take 2.5oz before she goes home. Today they removed her feeding tube to try and get her to eat a little better but it has not changed her intake much. The good thing about being on the floor is it is kinda like trial parenting. We care for her as if she were at home and do most everything ourselves. We have to take turns staying with her so we can get some rest but we have our little schedule to make things work. Tonya stays at night and leaves early morning to rest for the day while I stay during the day with Elle. We all are together during the evenings. Continue to pray that the feeding issue, it is very stressful to she her so hungry but unable to eat. Pray that whatever is wrong with her belly would be resolved and Elle would be able to eat normally.
6/3/08 Update
Elle moved to the floor today in her own room!! The PICU nurses and doctors were sad to see her go but we are so excited that it is one step closer to home. She was able to eat 1 3/4 oz of milk today. They believe her problem was a case of reflux and they are giving her Zantac which seems to help. The nurses want her to be able to eat more on her own and then move to breastfeeding as soon as possible. On the floor she has only two wires on her. They still have a feeding tube in her nose and an oxygen monitor on her foot. They have removed oxygen and will continue to monitor it throughout her time on the floor. This next step will be a time to continue to get her eating well and building strength in preparation for going home. Also on the floor she will get her normal baby checkups and screenings that she did not get at birth. Please pray that Elle would continue to do well with her feedings and build her strength up to go home.
6/1/08 Update
Sorry no update yesterday, it was a very busy day. Tonya and I arrived yesterday morning and Elle became a TV star. The hospital and local NBC were hosting a Children's Miracle Network Telethon and they interviewed us to talk about Elle's heart surgery. After the interview the nurse informed us that she had been a little fussy all morning. She had began taking bottles by mouth and she loved them, because of this they removed her feeding tube. She just decided that she did not want a bottle anymore. We are not sure if her stomach or her throat was upsetting her but she refused all day to drink from a bottle. They had to reinsert her feeding tube just to make sure she was getting fluids. This caused her to be fussy most of the day because she was hungry and once the feeding tube was put in her nose it aggravated her throat. Please pray for Elle today that whatever discomfort is causing her not to eat would subside and she could continue taking milk by mouth. The good news is that the PICU placed an order for Elle to be sent to the floor as they do not see a reason to keep her in critical care any longer. When a room comes available on the floor she will move down. This means that Tonya and I have been holding Elle as often as we can. She sleeps the best when she is in our arms. Also, please pray for baby Wyatt today, her roomate, he is in heart surgery all day today.
5/31/08 Update
And God answers our prayers again. Elle had a wonderful night last night and began eating a bottle every three hours. This morning she took a tiny amount of morphine to take the edge off and has not been in pain or needed anymore medication since. Because Elle is doing so well breathing and feeding they removed her oxygen and her two feeding tubes the one in her umbilical cord and the one in her nose. They also removed her arterial line from her right arm. Now she only has two IV lines in to administer medicine if she should need more. The head doctor of PICU, Dr. Wilson, returned today after being gone since before surgery and asked if Elle was the same baby. He was blown away by her progress. She has her pink color back and shows no blueness anywhere. All we can do is praise God for all the ways he is healing Elle's body. There is a good chance Elle will leave PICU to go to the normal pediatric floor. There they will do all normal baby shots and tests as well as remove the remaining pacemaker wires from her chest. We do not know how long she will stay on the floor but we are blown away by her progress so far. Continue to pray for her pain and the coming week. She will begin to learn how to nurse this week so this will be a challenge for her with her pain and breathing. Thank you for your continued prayers, God is answering.
5/30/08 Update
I continue to be amazed by God answering our prayers in Elle's life. We had been praying specifically that she would be able to come of her ventilator and breathe on her own. Today the doctors removed her sedation medicine and removed her from the ventilator. She is still on oxygen but just through a little nose clip. The hard part is now Elle is awake and is feeling pain. She has the saddest eyes and a pitiful whimper because she is in so much discomfort. Tonya and I watch her and cry wishing we could take her pain away. We sing her songs, read her books, and give her pacifier to comfort her. The pain also causes her blood pressure to rise so they give small amounts of morphine occasionally. They are trying to find a balance between pain medications without sedation so that she can still breathe on her own. Please pray for Elle today that God would comfort her and wrap his arms around her to help her rest and heal.
5/29/08 Update
Today has been a good day for Elle. This morning the doctors were able to remove her chest tube and her catheter. This means that the lasix were doing their job to remove fluid from her body and they were confident in her fluid output. She is still on her ventilator to help her breathing but have lowered that today from 60% oxygen to 48%. There was a little scare during lunch. Tonya and I had stepped out to go to the cafeteria for some food only to come back to see her surrounded by doctors and nurses with a large EKG machine. While she was sleeping her heart had a slight arrhythmia and was beating too fast. There was no affect on her blood pressure or other vital signs and they were able to get her heart back in rhythm by placing a bag of ice on her head. They believe this to be a side affect from some of the heart medicine she is receiving and lowered her dosage. The nurse inserted a feeding tube today and they will start feeding her milk this evening. Keep praying for Elle's strength and that she would be strong enough to be removed from the ventilator and breathe on her own. The doctors tell us once this happens the recovery process moves pretty quickly. Thank you for your support and prayers. Thank you to those of you who sacrificed by donating food, supplies, and money so that Tonya and I would have a place to stay in Charlottesville close to the hospital. You love and support is blessing.
5/28/08 Update
This morning Elle is doing wonderful. She had a good night without any complications and her swelling is slowly subsiding. When we walked in to see her last night she was completely still without any movement at all. This morning she is moving her lips in a sucking motion like she has her pacifier; it is so cute. They were actually able to get the oxygen tube in her nose instead of her mouth, something we had been praying for, so she can have her pacy anytime. She is also moving her arms and legs a little bit every now and then. The nurses still have her heavily sedated and on pain medication so she will not hurt today. She will also be getting some lasiks today to help remove the fluid from her body. Keep Elle in your prayers that she would be comfortable and in very minimal discomfort over the next few days.
After Surgery Update
As I write this I am at the bedside with Elle and Tonya. Words cannot describe the feelings of our heart. If you would have told me two weeks ago that we would be so excited to see Elle laying in a bed in PICU with surgical bandages, chest tubes, and all the other wires from her body I would have never believed you. Facebook is the way in which we know to shout God's goodness from the mountaintops. He has done so much in the past days to remind us of his love for us through Christ. She is doing very well and they are monitoring her very closely tonight. Just sitting with her Tonya and I were discussing all the little moments we miss as parents because we are worried about getting this dirty, picking this up, or going yet again somewhere else. All of this has reminded us what a beautiful gift of God Austen, Luke, and Elle are to us. We only have them for such a short time, a brief time to proclaim to them the Lord's goodness. Elle will soon be a walking reminder of God's goodness but tonight we will sit by our little girl and enjoy the gift of life. Thank you for your prayers and those that have supported us so much in this time. Those of you with children kiss them and always remember what blessings they are from the Lord.
Our Daughter's New Heart
Dr. Clark, came to visit us from cardiology to give us a preliminary report. His words were that he was very impressed with the repair of Elle's heart. Twenty minutes later, Dr. Peeler, the heart surgeon, came to tell us that Elle was doing wonderful. They repaired all three major problems, and when they placed the blood back in her heart she started beating perfectly on her own. They will actually close her chest tonight and she is on her way to PICU for recovery now. We have spent the last few moments praising our good God, quoting Scripture, and declaring His goodness to our family. Keep Elle in your prayers as she fully recovers. We have felt your prayers today and the comfort and peace that only God could give us. We have a special daughter now with a heart that is truly a gift from God himself. We look at her name and will declare its meaning in her life forever. Elle means "She" and Elizabeth means "God's bountifulness" or in one word "She is God's Bountifulness." Our God is a good God full of abundance, cares about our greatest fears and shows himself abundant in our time of need.
God is Good Update
Tonya and I walked our daughter to PICU from NICU this evening. She will stay there until and after surgery. We left during the 7:00pm shift change and came back to spend the evening holding Elle one last time before surgery. We return to Elle who is being taken care of by a nurse named Agnus. Agnus is an older South African lady and from the moment we met her we new she was special. She sang to our daughter and loved on her like she was her own. While Tonya was holding Elle Agnus began to sing "In Christ Alone," which is mine and Tonya's most favorite song. Tonya even wants it sung at her funeral. If you have not heard it, please look it up the words are so powerful. We were in a PICU waiting room all three of us singing to Elle and worshiping our wonderful God together. When we began to talk to her after singing with her she looked at us and said in her own words, "South Africa has gotten really bad, people fighting and turning from God." She then said, "But he says in the end times nations will fight nations, tribes will fight tribes, calamities will come throughout the world, but it only means that Christ is returning soon, and for me I look up and wait for my savior and try to stay blameless to be ready for his return." I cannot explain in words the way in which the Spirit moved in that moment. I at that moment knew that God was using Agnus to speak to us, telling us, that there are people in pain and fear all over the world, not only room 91c in PICU, and that he is in control and will one day make all things well. I have never met God on such a deeply intimate level in my entire life, in my time of greatest fear he spoke to Tonya and myself, singing us songs of his love on our heart level, reminding us He is in control and will be with his daughter, Elle, tomorrow. Thank you for all of your prayers you will never know the comfort God has given us on your behalf. Tomorrow we place our trust "In Christ Alone"
Update 5/26
The surgical team met with us today with a surgical plan. Elle will prep for surgery at 11:00am. They will start by putting her to sleep and then removing all the blood from her heart to operate. During this time she will be on a heart machine keeping blood to her body. First they plan to switch and move the main arterial valves. After this they will repair the septum wall to fix the hole in her heart. The final step will be to repair the aortic arch to fix the interruption in the aorta. After this they will reverse blood back into her heart to get her beating on her own. They will move her back to PICU where she will spend a few days then they will close her chest and watch her closely as she heals. The whole process is so daunting but we know she is ultimately in the hands of her heavenly father even when I cannot be there for her. Please pray all day tomorrow for little Elle, thank you for all the prayers up till now. The doctors are confident that she is in the best possible shape for surgery and we know this all because God is looking out for her.
Update 5/25
Dr. Landcliff, pediatric cardiologist, met with us today and said that Elle was in the best possible shape for surgery. They are very comfortable with her stability and may move her to PICU before surgery so she can get to know the nurses there. Immediately after surgery she will have to spend time in PICU so this will be good for her to get to know her surroundings. Surgery is still scheduled for Tuesday and the team of surgeons could meet with us today to discuss details. Last night I got to hold Elle for over and hour and a half and also got to feed her. This morning Tonya held her for almost two hours. She sleeps the best when she is in our arms so the nurses let us hold her as much as possible. Please continue to pray that she gains her strength and that her body and heart would be ready for surgery.
Update 5/24
Today has been another good day. Elle is now eating 8cc of milk every 3 hours. She is stable and is growing stronger in preparation for surgery. Today she opened her eyes for a long time to look at us as we fed her. The NICU Dr. informed us today that surgery would more than likely be on Tuesday but you know how these things can change. They are planning to come discuss the surgery with us tomorrow and let us know the complete plan. We will spend the next few days holding and loving Elle before surgery and continue to pray that she would be strong. Tonight I am planning on holding her for the first time and feeding her a bottle. It is amazing to watch the love of a mother but I can tell you from firsthand experience that a father's love is not far behind. Continue to pray for the surgical team that God would give them wisdom.
Update 5/23
Elle's heart surgeon stopped by to visit today. He was going to take a look at the reports and take some closer looks at her coronary arteries. He wants to be sure he knows the exact location and condition of those arteries before surgery. This could lead to a possible heart cath or simply more cardiograms. After he gets this info he will be ready for surgery possibly tuesday. The good news is Dr. Peeler has operated on a heart just like Elle's before and thinks he can do a two-ventricle repair and restore her heart to normal. All of this is dependent on the coronary arteries being in the correct position. This is such an answer to prayer because we were originally told that her heart would be made uni-ventricle and would not be "normal" for the rest of her life. God is good and is preparing the way to heal our daughter. Please pray that God would give Dr. Peeler wisdom to fix Elle's heart.
Update 5/22
Elle has had a great day today!!. Last night Tonya got to hold her for the first time. We got to spend over an hour together holding and loving on our daughter. We made sure to tell her you were all praying for her. Today she got to eat breastmilk for the first time. They originally told us they were not going to feed her before surgery but decided to go ahead and get her strong before then. They also let her sleep on her side today for the first time. She is much more comfortable in this position and was sleeping great. This causes her oxygen levels to rise and respiratory rate to stabilize. The team of cardiologists decided today that the heart surgeon would come see Elle in the next couple days and begin determining the best course of action to repair her aorta. They had originally planned to meet next Wednesday but are moving the process much faster to get a better gameplan. Please pray that God would give the surgeon's wisdom to determine the best course of action. Please pray that Elle would continue to grow strong and her body would get ready for surgery. Pray that God's comfort would cover our other two children, Luke and Austen, and tonya and myself.