But tonight while Brooklan and daddy are at softball, Aili and I are getting some much needed snuggle time in. I love it. :)
Love & Hugs to u All and looking forward to seeing you Saturday, if you can make it.
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7:44pm We are so thankful the service for Avelyn is set for Saturday. So many details to work out that we are trying to make 'as perfect as possible' to honor our sweet baby girl. With this, our big girls have been so good. They have been different places playing with friends--so fun for them, but also so different and in so many places, which has been out of the ordinary for them. They have been exhausted in the evenings and overall have done so well. We appreciate so much the friends that have helped us out--u r all just wonderful, and also those that have offered, your time may be coming if /when we need help. :) And all of you that have given so graciously in so many other ways, as well...we can't even begin to list the ways... Thank u and God Bless You All!!!
But tonight while Brooklan and daddy are at softball, Aili and I are getting some much needed snuggle time in. I love it. :) Love & Hugs to u All and looking forward to seeing you Saturday, if you can make it. Entry by Josh:
10:42pm Hello all, We have set funeral services for Saturday, May 31st, 10:30am at: Life Spring Church 206 N. Webster Spring Hill, KS 66083 Following the service there will be a brief time for us to greet/say hi to everyone that is there. We understand that life is busy but would be thrilled to have you join us if you are able. Entry by Josh:
1:02pm Hi guys, this is Josh. Many of you already know that our precious girl Avelyn passed away yesterday evening. So why am did I title this Pure Joy? I can assure you it has nothing to do with how we are feeling. We are hurting a great deal, and will need your continued prayers and support in this. The pure Joy that I am talking about is what I know without a doubt our beautiful daughter is experiencing as I write this. This is a Joy that none of us has yet experienced here, and won't until it's our time to meet our God face to face - Our God and father of Jesus Christ. The only positive we can take comfort in is that we will some day see her again, and experience that same Joy with her. For ANY of you that are reading this, if you don't have a relationship with Jesus, my hope for you is that you will seek him out, and you will learn that he loves you (more than anyone else can), and wants good for you in all things. Find him now...don't wait. He loves each of us the same - beyond our comprehension - anyone who tells you differently based on who you are in any way is lying to you. It doesn't matter who you are, once you accept him you are forgiven and saved. So...ask questions, try talking to him...he doesn't listen like you and I - he hears you at the level of your heart...no mis-understanding or mis-interpretation. Read about him in the Bible - if you haven't done this before you WILL have questions, so ask. Once you know him and have a relationship with him, he WILL give you peace, help you sustain it beyond human understanding...This is my prayer for you - please seek him out. If you DO already know Jesus, use Avelyn's story as a motivation to share that story with people when you have a chance - when God is prompting you to...because everyone deserves the opportunity to experience this Pure Joy. It is impossible for me as a child of his (I've never felt more like a child when it comes to asking why things happen) to understand this. We have prayed countless times for a miracle in every way you can imagine...from our knees with pleading, in anger, with questions of why, etc...etc...and in all of it, we have faith that God's will for our life and Avelyn's is good. We can't understand it, but we know it's true. She had so many challenges that her body simply couldn't sustain them any longer, and we won't know what her life on this earth would have been like - we know from what we saw, heard from experts, and felt, that she was in a lot of pain. Near the end, she couldn't breath without a ventilator set at its highest setting, her swelling was very bad in every part of her body, her lungs were filled with fluid, and her little heart was challenged to pump. Having your children experience pain is horrible, so we are grateful that the pain is now gone - all of it...every ounce of it. Thank you all so much for showing us your love...we have been so blessed by it. Going forward, we just ask that you pray for us, and as you feel led to support us, we ask you to pray for guidance in that as well. I can guarantee you that we are praying for you and will support you regardless of the trials that life throws at you. To ALL of the staff at Children's Mercy, words cannot describe the love and care that you've shown us. As you enter the hospital there is a wooden plaque on the wall with this quote that Michele and I noticed early on: "Skill cannot take the place of Sympathy and Understanding, for science without heart is ugly and pitiless." You all made this very clear to us, and that you apply these words every day. You made it easy to trust you and make it remotely acceptable to leave the hospital when all we really wanted to do was stay right beside Avelyn every minute of every day. I'm not sure how much longer we will keep this site active. We haven't discussed it yet. If and when we do choose to de-activate it, we will continue to communicate with you all in varying ways. In the end, life on earth continues for us and we are now transitioning to get back to life as normal as it can be under the circumstances. We again ask for your prayers and help in this transition through sometimes talking with us, and sometimes understanding when silence and focus on other activities are what's best. We want your support, and love as always. That's all for now... 6:05am
Thursday night after our care conference when things settled down a bit and Josh & I were finally able to sit down and relax, we both fell asleep sitting in the living room at about 11pm. I was supposed to have been pumping, so around 1am, this woke me up. After doing this, I started to hear rain. At first the rain sounded fairly heavy, but then it tapered off. I went out front and sat on our front porch just watching the peaceful rain, and I actually took some pictures when there were only light sprinkles remaining bc it was just so peaceful. When I was still outside, just after 2am, my phone rang. I had it with me bc I had been getting ready to call Avelyn's night nurse to see how she was doing, as I had done in previous nights.--But instead Avelyn's night doctor was calling me. She reported Avelyn's blood pressure had been dropping; when it had done this two nights ago when Josh was there, one fluid bolus (salt water) was able to bring it back up; I believe this helps bc it gives the heart more fluid to pump. But Thursday night they had tried 3 of these with little to no results.--They were starting a 4th and then were also going to give hydrocortisone (a steroid) to try to help, as well. After getting ahold of someone to come sit at our home with the girls (thank u!), we left for the hospital. We called Ave's nurse on our way there and they said this had finally helped to bring up her blood pressure so she was stable. But as u might expect, bc of all the fluid they had to give her, she was even more significantly swollen; she couldn't even keep her little tongue in her mouth bc it was so swollen. When we got there, the next few hours consisted of trying to keep her stable. They kept increasing her settings on the vent to make this happen. Finally by around 8am, her numbers looked more stable (although still not as good as they had been the days prior), but they said they had maxed out the settings and couldn't go any higher. This is when our little fighter, our overcomer, held her own. She remained stable for the next several hours until more of our family could get into town in the late afternoon.--We were very thankful for this bc around 11am, she started showing signs on her skin that her little heart wouldn't last much longer, but she kept fighting. But her precious body had already endured so much; besides her heart showing signs, she continued to become more swollen with little to no wet diapers and she just looked so uncomfortable. She finally left us at 6:21 pm, to go meet our Lord and Savior Jesus Christ. We prayed so hard for a miracle, as many of u have been, but God has other plans for her. This makes us so sad and we have cried so many tears, but we feel her earthly body had had enough. She was ready to go and God was awaiting her with open and loving arms, welcoming her into His kingdom. I awoke again this morning (Friday night/Saturday morning), needing to pump, to another peaceful rain. I will never forget these moments. I feel she is showing me that even in the rain, "My Sunshine" is shining through...and it's so peaceful to feel this and to know this. I sang this song to her hundreds of times..."You are my sunshine, my only sunshine. You make me happy when skies are gray. You'll never know dear how much I love you. Please don't take my sunshine away..." We love you sweet Avelyn. 10:38pm We had our care conference late Thursday afternoon. This is a conference that many families have on a weekly or bi-weekly basis when their baby is in the NICU. It is good bc you have all the specialists in the room including everyone from the neonatologist and cardiologist to a social worker and a chaplain. It helps with coordination of care, helps get all your questions answered in one sitting, and allows the specialists to discuss their plan for your baby while all are present.
For us there were about 10 specialists in the room and we appreciated all the support. The cardiologist did a lot of the talking early on and he reported that unfortunately the echocardiogram showed that Avelyn's heart has gotten worse since Monday. Her numbers on her monitor looked better so the beta blocker is helping with that, but the echo shows the right side of her heart continues to be more thickened.--They described her heart at this point as being "irreversible." Also as they try to continue to treat her heart, they feel the lungs and the extra fluid/edema throughout Avelyn's little body will continue to get worse.--And if they try to treat the lungs and decrease the fluid, they feel her heart will continue to get even worse. They described it as being "stuck between a rock and a hard place." They are going to continue to treat her, but they do not have a positive outlook; they do not feel she is going to make it. We are remaining faithful and asking God for a miracle, because at this point it sounds like the medical professionals have done all they know how to do. Also they feel like Avelyn is suffering and we don't want this. We want her precious little body to be healed. We pray God continues to hold her in His arms and comfort her. We are relying on this right now. Please be praying for a miracle. But also be praying that our sweet little Avelyn finds peace and comfort, whatever that may mean. Thank you all for everything. Love and hugs to each of u... 6:09am
As we continue on this journey, we pray that the ultimate blessing is that the Lord our God will heal our baby girl; that we will bring Avelyn home to live a fully functional, spirit filled life for God.--That will continue to be our prayer. Along the way we have already experienced so many blessings from so many people, some we don't even know. Thank you so much and may God Bless you as u have blessed us. We are very humbled by this and can't express how much it means to us. Love and hugs to each of you, our friends/family...and those we don't know or have chosen to remain anonymous, whom we now consider our friends/family, as well. Thank u!!! 1:13am
The past couple days Avelyn has done better without me singing or talking to her.--When I would do this her heart rate and blood pressure would go up and/or she would start to get restless or agitated. It's so hard not talking to her bc I want her to hear my voice, but I also know I need to do what's best for her. Three or four days ago, me singing to her was calming her down, making her vital signs better, which was so nice as her Mommy. :) Well today she was being a little stinker...and I loved it. :) I was tired and wanting to take a nap 'with' her.--Well she was having none of that. :) I was giving her a hand hug (placing one hand on her head and one hand on her legs--gently but firmly is what they say to do). As I sang to her, talked to her, and/or kept my hands on her, her O2 sats remained good. Immediately when I tried to take my hands off of her (so I could sit beside her to rest), I would hear her monitor beap and I would peak around to see her O2 sats dropping. When I would put my hands back on her, the beeping would stop and her O2 sats came back up. This happened probably 5-6 times. It was like she was playing a game with me, but I feel she's letting me know that she knows I'm there.--I love that she knows me and is responding to me...and I look forward to when I can love on her even more. I know she is in the best place she can be right now and I will continue to support her in any way I can, my little stinker. :) Comments by others: Oh mommy....it was no game...it was the sheer peace & comfort that she has come to to experience with your love! :) With all the unnatural discomforts in her world--she is learning that your touch & voice bring comfort--a place for her to thrive. How precious! It is a great way to be mom & dad when your parenting feels so abnormal. God--blessing her through you & you through her physical & emotional response! Love to you all! (R.L.) 11:55pm Our poor baby girl. She is getting hit with so many different things. Today she had a culture come back from her trach tube showing a slight sign of infection. It was very very minimal, but is a type of infection that could potentially cause bacterial meningitis. The neonatologist doesn't think she has this, but they can't do a lumbar puncture on her to check her spinal fluid to make sure (bc of her status, increased edema, and the vent she is on that slightly shakes her body--this would put her at risk due to decreased accuracy with the test), they r going ahead and putting her on antibiotics to decrease the potential of this coming on. This afternoon she seemed restful, not getting agitated or needing pain meds, but her O2 sats were dropping some as they slightly increased her O2% again. The doctor describes her as stable and continually reitterates it's a day by day process. Praying she remains stable and continues to make progress. Josh just got home a little while ago from being up there late and said she did unfortunately gain weight again. :( It's just such a balance and will be harder to lose weight now that the focus is on getting more fluids for her heart. Despite all the other things she is battling, the focus needs to continue to be the heart. Having faith that she is in God's hands and He will continue to heal her little body. Praying she has the energy to continue to fight this, my little 'Overcomer.' They say so much of the treatment is driven by what she is 'telling' us.Thank u for praying with us!!
11:01am
Just saw the cardiologist and his words were, "this is the best case scenario for this morning." Praise God!! Avelyn's numbers are looking better as far as her heart goes; heart rate is less (between 110 and 120--where they want it) and blood pressure is less as well.--The medicine (beta blocker propranolol) is doing what they were hoping for. Also Ave's O2 sats are better with less O2% overall. They did have to bump up her O2% a bit when we were turning her earlier; this is bc she is so uncomfortable and gets upset when we move her to a different postion. They have to move her to keep shifting her fluid, but it's just so uncomfortable for her. :( So overall a better day thus far. Since stopping the lasix she isn't peeing as much and she actually gained about 4 oz, so please start 'praying for pee' again and that she will keep getting rid of the fluid in her lungs and on her body without the Lasix as we have shifted the focus more to her heart. Thank u!! And thank u so much for lifting us up in prayer since all this started--especially the past 24 hours. I know I have needed it and I am feeling more of God's peace today. Most of all keep praying for our baby girl. Thank u!!! 9:16pm This is all new to us. Maybe days like this with your baby in the NICU are normal. I'm hoping not. It just seemed like it was one bad thing after another today. First the news about her seizure-like symptoms today (which they called tonight and said neurology recommended going ahead and putting her on an anti-seizure med for this, just prophylacticly since they can't do any further testing right now bc of the type of vent she is on; so they can't confirm the seizure yet, but they want to prevent more if it was one). During the day, she wasn't doing as well keeping her O2 sats up even though they kept bumping up her O2%. Because of this, this afternoon they started her on nitric oxide through her breathing tube to help better dilate the lungs where needed. The chest x-ray looked about the same, which was good news, however this was likely the case bc they have decided her main issue is her heart. Today's echocardiogram was worse. They have diagnosed her with hypertrophic cardiomyopathy, which initially was only severe in the left ventricle of the heart, but today's echo showed it is now severe in the right ventricle, as well (her prior echo showed it only being moderate on the right). So they believe her heart is causing all her symptoms. Now they will need to focus more on the heart, which will take some of the focus off the lungs. They want to discontinue the lasix so they can keep better fluid within her heart, bc the ventricles need fluid to work more effectively. They are starting her on a beta-blocker for her heart, hoping it will help. They want to see how she resonds to this.
This was a rough day. Was hoping for better. Hoping those baby steps of progress start again...and my constant prayer continues to be 'Lord just please heal her, ' but we talked a lot more today, as well. I just feel so bad for her. She looks so uncomfortable and I just want her to feel better so she can come home with us. I want God to heal her NOW, I know this can happen and hold onto hope for this. They told us it could be months, but we continue to pray for less than this. Please pray the Lord our God heals her precious little heart and she continues to progress from there. Thank u! Love and hugs to u all. |
MicheleAvelyn's Mommy - Lover of Jesus - Receiver of God's GRACE Archives
September 2017
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