My precious baby Lake.
Well, this is a bit of a different post.
You see we scheduled a late sono to check everything.
Make sure the placenta placement was good for the home-birth, since you are a 3VBAC and I have an anterior placenta.
Once we got to the sono place we were eager to double check your sex… and sure enough you are still a girl!
What we didn’t know is that our sonographer was a little concerned back in December about your heart.
Somehow we never knew about this and luckily everything has worked out.
We are SO grateful for God opening this door for us… as we never expected anything to come up “wrong” with you…
Going to the late sonogram confirmed her concerns.
Your heart appeared to be quite large and taking up a lot of space in your chest cavity.
They also could not distinguish four separate chambers.
We walked out of the office confused, shocked and scared.
I began crying, not knowing what to expect.
I was scared for us, so worried for you and just in shock that you – my precious baby has something wrong with one of the MOST important organs in your body.
What does any of this mean?
We were fortunate enough to get into a perinatologist a couple of hours later at Harris, just minutes away from our home.
She was able to perform a sonogram and really check out baby’s heart.
She confirmed the enlargement and chamber issues.
Because of the enlargement, things came up such as down syndrome and mental disability, but Dr. was unsure of the cause or diagnosis.
Your bones were measuring “normal” which seemed that you may be without any other issues, besides your heart.
We were sent over to Cook Children’s for an in depth and more accurate echo-sono of your heart with the pediatric cardiologist.
We were in there for about 45 minutes or so, while they gathered photos, videos, and blood flow information of your heart.
The cardiologist was in a different room gathering all of the information and diagnosing it all.
She came in and explained the situation.
You have a heart condition called, “Ebstein’s Anomaly.”
The text book definition is:
“Your tricuspid valve — the valve between the chambers on the right side of your heart — doesn’t work properly. Blood leaks back through the valve, making your heart work less efficiently. Ebstein’s anomaly may also lead to enlargement of the heart or heart failure.”
This is a good site with info.
Since your valve isn’t working, the blood flow is getting backed up in the right side of your heart allowing the right atrium to dilate a lot!
Your heart takes up 50%+ of your chest cavity right now.
Also your leaflet valves between the right atrium and right ventricle are abnormally placed and blood is just going back and forth between the two chambers.
Your lungs are quite squished and we are unsure if they have grown to an adequate size.
We are hoping and praying that FIRST your lungs are strong and awesome, so that you can undergo some surgeries for your heart.
Breathe Lake, I want you to use those precious lungs and allow them to do their job and just breathe – well, breathe strong, breathe like a healthy baby!
We are so fortunate to have one of THE BEST children’s hospitals and one of the BEST cardiological teams in the WORLD. 🙂
I think many friends, peers, and patients would agree.
The perinatologist has decided it would be best to have a cesarean in about two weeks.
This timing is going to allow your lungs to mature as much as possible.
Yesterday your heart was also tachycardic, meaning it was at SUPER HIGH heart rates for brief periods of time.
A normal baby heart rate usually is between 120-160bpm or so, while yours was reaching nearly 300bpm at times.
They decided that the best thing to do for you – was to admit me in the hospital, so they can monitor your heart rate.
This is another reason they do not want you to be in the womb for the full 40 weeks, to protect your heart from stress.
We were admitted on Tuesday night.
Last night we met with your cadiothoracic surgeon.
He has worked on a case very similar to yours and the little boy is THREE!
Here is YOUR PLAN:
If everything stays the same, we will have a cesarean in about two weeks.
I will get to see you briefly and they will see how your breathing is.
I may get to even hold you for a moment.
You will look normal on the outside, but the insides are where the problems lie.
They will have a ventilator and team in the room with us waiting to see what you need.
They will take you over the bridge to the Children’s hospital NICU.
They will closely observe you and do anything they need to do, to keep you breathing and well.
They plan on having your open heart surgery a couple of days or so after birth.
This surgery will allow them to patch your two chambers, attempt to open your valve, reduce your heart size, and adding a shunt.
All of this will temporarily allow your heart to function more normally.
After a few months, you will need a new replacement shunt – perhaps using one of your arteries.
We will cross that bridge, when it comes.
Whew, that is a lot of words to type and you cannot read yet. 🙂
Now, your surgery is a more rare open heart surgery, that was associated with higher risks a decade ago.
Our doctor believes you will be in better odds because of the wonderful medical advancements in 2013 and knowledge.
This condition is not common, so it’s only about 1 in 10k births.
This means that hospitals who “specailize” in this condition may only have TWENTY patients, rather than hundreds or more.
So there isn’t a ton of info to compare cases or see full results.
Now, I know – deep down – withe every bit of my soul that you are a fighter.
That God has a plan for you.
That this will create you to be the most amazing woman.
Your team of doctors want you to be able to play in PE and one day carry your own children.
They want you to be as close to normal as possible… and you can be sweet girl.
I am so ready to see my warrior baby fight with your precious spirit and being.
I believe in you. I know God can do amazing things. I want you to survive, conquer and thrive.
You have SO many people praying for you – you have people that I have never met… will never meet… who know your name, your story.
I am in awe of our supporters – they are lifting you up sweet girl and I want you to let it fill up your spirit.
I sit here in the hospital believing and knowing that you will be well. That God will prevail and that you will know him, trust him love him. That your mommy and daddy will be your first true love – that you light up when we are loving on you. That your purpose is to fit right in to our sacred little crew. So you can run around in diapers and argue with your sisters about who is going to wear which tutu. That Pierson will be able to snuggle up with you and pull you around in the wagon. That Daddy will be able to flip you around and read you books in his silly voice. That I will scoop you up and comfort you when you are upset, hurt, or sleepy. That we will all sit around the table together… and watch you dump food on the floor and make humongous messes… and laugh, because you are with us. That you are part of this family and fearfully and wonderfully made.
I know you can do this. My precious baby.
You are absolutely beautiful and perfect… and in our Lord’s hands.
Use Him as your guide and please – oh -please… show us your purpose, my sweet girl.
I just want to hold you, but realize it may be a long time until I can really do so.
Be strong. Be courageous. and Know you are loved and prayed for by many many many people.
I love you. So much. My little Warrior Princess!
We will keep you, this precious Baby, and your whole family in our prayers to stay strong and heal quickly.
Oh sweet Arden…my heart goes out to you and your precious family. Lord, please place your hedge of protection around Arden and Lake. I pray for a successful c-section. I pray Lake’s lungs are strong to undergo the surgery that her heart needs. You oh Lord know all things. You give us strength we cannot imagine. I pray you give this strength to the Jenkins family. Surround them with your love, comfort and peace. Let them find their strength in You. It is in your precious and mighty Son’s name I pray. Amen
Oh, Arden. My little Rachel and I have been praying for you! I have tears coming down just reading your prayers for your sweet baby girl. You are so right- your family is well loved and lifted up. Remember, HE is the lifter of your head, and the protector of Little Lake’s heart. Lots of love and peace and hugs from Chi-town.
Arden – you have always been such an inspiration to me. Your incredible heart, willingness to share all your knowledge with your fans, the amazing mother you are to your babies, loving wife to your husband and a follower of God. You have been blessed and your sweet fighting Lake is going to be a tough cookie! She, and you and your family, are in my prayers. Can I share your story to widen the prayer chain?
Thinking of you!
xoxo
Many prayers for baby Lake, as well as for you and your family! I admire your strength, and know that God’s hands are on that beautiful baby girl!
Oh Arden, your precious baby girl is in my prayers every day! I also pray for you- you are such a strong and amazing woman, and God has placed this little one in your life for a very powerful purpose!
Hang in there, and keep us updated!
Oh Arden, I will be praying for all of you! I’m so glad the doctors know what to do and have a plan. I will be praying for strength as I’m sure the next few weeks and months will be tiring for your whole crew! Praying for Baby Lake to heal quickly and that the Lord would guide the doctors as they treat her. <3
Sweet Arden and family,we are lifting you,your family and precious Lake up to the Lord.The Master hears our cries!So thankful you are at such a wonderful hospital.Just think what a wonderful testimony you are going to have, how the Lord healed your child and brought her out of the desert.Joy comes in the morning,hang in there, joy is right around the corner for you all.Many prayers
sending you and baby lake lots of positive energy and love!
I’ll be praying for you, your family and especially baby lake! God WILL prevail, stay humble and keep in His word. Don’t lose faith in the report of the Lord! Stay blessed Arden!
You and your family are in our prayers. I know this is not the way you wanted Lake’s birth to go but what a blessing to know NOW. Take comfort in your faith and your beautiful family and draw your strength from them. You are a fighter and just as surely, Baby Lake is a fighter. Take care of yourself and rest. I just know that she will come through this and you will hold her in your arms soon.
Oh my gosh Arden. I am crying and praying all at once. Praying for a safe delivery and a perfect open heart surgery on your sweet baby heart. I know God is holding Lake in His hands right this second, just like he is holding you. I will pray every day Arden. I will ask my friends to pray also. Sending all the love in the world.
Arden, this sure hits close to home. The Jenkins clan will be in our prayers over the next few weeks. We don’t see each other often, but I can’t wait to meet Miss Lake. May God bless your family, as He does always for all of us.
Prayers for your crew. She is going to be amazing!!!
In tears right now as I read your sweet words. I am praying with you Arden! Hugs!
Oh Arden, I will pray very very hard for you and your precious baby. Love yo your family as well.
Dear Arden and Family,
Your photography is simply beautiful. I came across your talent on Pinterest from a Pin on your techniques in newborn photography. I am a newbie and am pouring myself into this industry, hoping someday to make it my dream and career. Your work is so inspirational and breathtaking. Photography has always been a passionate hobby of mine, but not something I had considered making a career and joy from, that is until the birth of my son, Isaac.
While I was pregnant with Isaac, I had spent hours and hours scoring the internet looking at newborn photography and getting ideas for the big day of when he would be getting his pictures done! I showed my husband hundreds of ideas and pictures of what I wanted done with his newborn photos. Everything was set up, scheduled and ready for Isaac’s pictures.
I had an unexpected C-section from complications during labor, later to realize these complications where part a Bigger plan for my little guy. Isaac came into this world struggling. He just couldn’t seem to catch his breath, had no endurance, and what looked like to be pneumonia. This went on for nine days in the NICU. He had good days and bad days. When he started to keep having those bad days however, the doctors really started looking everywhere for answers. During those nine days I had held Isaac once. Just touching him sent his numbers all over the place.
We got our answer on the ninth day. Isaac had a congenital heart defect known as TAPVR (Total Anomalous Pulmonary Venous Return). Basically the left side of his heart never opened up so his blood was pumping in circles and not getting properly oxygenated. There was however one small fetal vein that went from the right side of his heart done through his liver and back to the left side of his heart that had been keeping him alive (the return). God knew what he was doing and always has a perfect plan. If my labor and proceeded normally and had given a natural birth to Isaac, he would not be here today. The fetal vein would have closed from the pressure and he would have bleed to death in a matter of minutes. Babies with this condition don’t make it past the first 24 hours without open heart surgery. Isaac made it nine days. I thank God everyday for saving my little man. He was scheduled for open heart surgery the very next morning. This brought my husband and I closer together then we ever have been.
I just wanted to reach out with some support and kind words from someone who can relate. I guess that’s what happens when you experience something like this and as you go through life you will realize you are in this group of people who have experienced such an experience. You can relate to them. Other people always offer kind words, support, and love through this time in your life, but you realize that they just do not KNOW what it is like. Just being in a hospital NICU is a humbling and unique experience.
Arden, you are going to feel things that you never thought possible to even comprehend, but in the end it will be OK! There will be good days that follow the surgery and not so good days. Its just how things happen. You will feel a love for Lake that you never thought possible and a whole different outtake on life. I know I did and it has been for the better 🙂 What I saw and it literally smacked me in the face was the miracle of God. He knows what he is doing and has a perfect plan. Best wishes to you and your family and to our mended little hearts. Will be praying for you and your family and a uneventful and successful surgery for your little Lake 🙂
Cassie
Oh my gosh! As a fellow CHD mommy you have stated so beautifully what I’ve felt so many times.
Arden, my heart breaks for you and your precious family! My son, Derrick, was born with a special heart. He has undergone 2 open heart surgeries and will have another one in May. Next week he will be FOUR! :). I will be praying for peace for you and your family as you go through the next several weeks. If there are any questions I may be able to answer, from one mama to another, let me know. It’s a scary road, but an incredible ride. Prayers!
I am praying for you, baby Lake, and your sweet family. Thank you for being so brave and truly shining His light through this.
Arden,
you, Lake and the rest of your precious family are in my prayers! On the advice of my pastor I will write the prayer for you to read as well:
Lord Jesus, You are the great physician. Be with Arden and baby Lake during this time. Lord, I pray for a peaceful and safe delivery for Arden. Send your healing hands to guide the surgeons as they complete the most delicate of surgeries on this precious child. Heal this child Lord, if it be your will. Comfort Arden and Paul and they wait anxiously for their sweet daughter. Send them peace that your will be done and that Lake is a child of God. In your most holy and precious name I pray. Amen.
Dear Arden, I have no words. I saw your post on fb & it was so unexpected I could not form a response as it hits so very close to home for me. I can see you as always rise to the challenges in your life with the utmost grace & your own “warrior” ways…doing everything you can & acquiring all the information you need to help your baby & family get through this unexpected event in your lives. Though I said I have no words I do have prayers which I will be sending for Baby Lake. I also have faith that God is there with you & your family during this difficult time in your life. Your family will be in my thoughts & prayers, I look forward to “seeing” Lake & hearing about the wonderful progress she will be making on her healing journey so that she can join her family at home. Prayers & Love, Helen
As a mommy of 2 kids (out of three) with birth defects I can relate to how it feels to receive such news. I pray all goes smoothly with the pregnancy, birth, and surgery of your little one!
Praying for you and your brave family!
Your little Lake is so blessed to have you waiting for her. Prayers for you and your lovely family.
Praying for you, precious baby Lake, & your whole family!!!
“Where shall I go from your Spirit? Or where shall I flee from your presence?
If I ascend to heaven, you are there! If I make my bed in Sheol, you are there!
If I take the wings of the morning and dwell in the uttermost parts of the sea,
even there your hand shall lead me, and your right hand shall hold me.
If I say, “Surely the darkness shall cover me, and the light about me be night,”
even the darkness is not dark to you; the night is bright as the day, for darkness is as light with you.
For you formed my inward parts; you knitted me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.
My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.
Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.
How precious to me are your thoughts, O God! How vast is the sum of them!”
From Psalms 139
Prayers for you, your family, and your little princess.
Oh Arden my prayers will be with you and your sweet babe and your whole family. There is such power in prayer! Rest in the fact that so many are uplifting you and little Lake in prayer. I pray that your heart will be encouraged, that little Lake will be well and that she will be a miracle baby who will her story throughout her life, and that you will nestle into your Maker’s arms!
Arden, my heart goes out to you and your sweet family. I am praying for you all and sweet baby Lake. May God be glorified through her long and fruitful life!
Sending HUGE love and a myriad prayers to you and your precious Baby Lake across the oceans. All my love, Tarryn (South Africa)
My thoughts and prayers are with you!! Baby Lake is very lucky to have such a wonderful family!
Arden, You are a strong, brave woman and I just know your daughter is going to follow in your footsteps. I have nothing but admiration for your talents and strengths. We have never met but I can just tell because your posts ooze of what an incredible person you are. Many thoughts are prayers are going out for you, your family, and sweet Baby Lake 🙂 Keep your head up!
Much love,
Katie
Arden,
I am on my knees lifting up your little angel baby and family. God only gives special babies like Lake to the strongest, most capable mommies. You can do this.
You have an army of warriors behind you that will pray as Lake enters this world and through each day after.
I’m praying for supernatural peace that passess understanding and for the mighty hand of God to hold Lake’s tiny heart in His more than capable hands.
You are loved, supported, prayed for, thought of, and carried by so many. I pray you find peace in that.
On my knees,
Jenn
Arden,
I wanted to express how saddened I am to read your post. I have and will continue to pray for you, your family and your precious little Lake.
I am praying for your baby, for you, and for your family. God is a mighty miracle worker and has a plan for your precious baby girl and family. I admire your strength and openness, hold on to Him….He’s holding all of you and especially that precious baby’s heart!
Arden,
I am praying for your precious family, especially Baby Lake. You are surrounded by some of the best hands in the country and mostly importantly you are not going through this alone. HE will be holding your hand the entire way. You have many prayer warriors on their knees praying for your sweet little girl and interceding on your behalf. May you find complete strength in HIM. I pray that Lake’s sweet little lungs are fully developed, for a smooth and calm Cesarean delivery, & quick healing on your behalf . I believe in the power in prayer, I fully believe in complete restoration & healing. I have witnesses HIS power & miracles. Faithfully praying!!
Love,
Cheri
To the Jenkins Family~ My husband and I will be keeping you and your family in our thoughts.
Keira, my step-daughter, was born with the exact same condition, Ebstein’s Anomaly. She has had more than her fair-share of surgeries and hospital time, but she is the strongest 7 year old I know; she is an awesome kid with an absolute love for life.
I will be praying for strength for your family–to get through the tough times ahead, but farther on down the road, you will need that strength to keep up with your daughter who will have that same absolute love for life, and endless energy!
With Love~Patrice Odle
Arden and family,
My family is keeping every one of you in our thoughts and prayers. God does amazing things, and I know he will help little Lake pull through. She has many people praying for her!
Sarah
Prayers to youand your family. Huge prayers for your daughter and the amazing people at Cook Childrens.
My son had two open heart surgeries at Cook before the age of .I can attest to the miracle work they do. Dr. Tam was our surgeon and I believe he, along with ALL the staff can perform miracles. You and she are in the best of hands!
If you need to talk to anyone please contact me. I realize you don’t know me but cam across your story and I can honestly say I can relate.
God bless and God loves his babies and will wrap his arms around Lake and guide y’all through this journey.
Dearest Arden and Family,
You DO have so many people praying for you. Arden, you are such a blessing to so many pros and so many amateurs…I pray that we will all now be a blessing to you when you need it most. I pray that you receive just the right words of encouragement at just the right times, that God would protect and strengthen your precious baby Lake, that He wouldl protect you and your husbands’ hearts and minds as I’m sure you have so many questions, that He would help you to have the energy and the emotional capacity to love on your other 3 amazing kiddos, that He would be working in their hearts as well at this time even if they don’t understand everything that’s going on. I pray that God would continue to strengthen you all as a family, bring you closer together, and closer to Himself. And, I especially pray that you would feel God’s hand and his comfort every second of every day until Lake arrives, through her surgeries, and until you see your little girl healthy and stable.
You are all loved, appreciated, and prayed for! I’m so glad that you know Jesus and are trusting God throughout all of this. He has a plan. Jeremiah 29:11, Baby Lake.
Your Sister in Christ,
Bekah
Arden, I’m one of those you told Lake about that you have never met and probably never will meet. My prayers for you, your family, Lake’s doctors, and all involved in her care and recovery are being offered. God is with you.
Susan
Praying for you and Baby Lake!
Oh my goodness Arden, I am praying so hard for you and your sweet baby Lake. You are an amazing woman of faith and strength and I’m happy to call you a friend. Love and hugs. Xoxo.
Arden, Paul and Family,
I believe Lake will grow into a wonderful woman; I can not believe anything else. We will be kindred spirits, she and I, each having a “special” heart. I can’t wait to be there and see all of you. I will keep you in my prayers. I love all of you!
Peach
We are praying for you. For Paul, each of your sweet little ones and for Lake.
So sorry to hear about your sweet girl. Prayers to you and your family. My husbands cousins baby has the Ebsteins Abnormality. It’s been a long road but she just celebrated her first birthday. Their blog is prayerforkenzie.blogspot.com if you want to read their story.
Arden, I will be praying for sweet baby Lake. I have adopted two little girls with severe congenital heart defects. I have been amazed at how God brought them through. They were born in China and didn’t get surgeries until much later than they would have in the US…but still…in miraculous ways, He made their hearts and lungs work well enough to survive until surgery. I will pray He does the same thing for baby Lake. He is able! Keep hanging on to Him in faith and He will give you peace and strength while you rest in the hospital waiting for your sweet girl to be born.
I have been lifting baby Lake up in prayer as well as your entire family. I just know it will all work out, you are an amazing family and your strong faith will get you through all of this. Your words amaze me, you are simply an incredible person that I hope to one day cross paths with. Will continue to pray and follow your story. Hugs from Conroe, TX
Praying for you and your babe!
Arden,
You are such a wonderful human being. What a beautiful note to your little Warrior Princess. I hope that your wee girl’s strength builds from all the amazing words of support from these comments above. WOW. I love how people can wrap around each other from miles away during times like this. Thinking of you and your family and hoping for all the best in the weeks and months to come.
Praying for you and your precious baby, Lake. This must have been so shocking and heavy to hear. May your whole family be at peace and may Lake receive the best possible outcome in capable Doctor’s hands.
Arden, sending prayers your way to you and your beautiful family. I don’t know what to say and probably because I can’t see right now due to tears streaming down my face. You are so amazingly strong and little baby Lake will be strong too!
Praying for your family! My niece was born with a CHD. It’s much more common than what most realize. Check out The Elle Foundation created by our family to bring awareness and hope for little hearts. Here’s the website: http://www.theellefoundation.org. Talk to your doctors about home monitoring kits once she is sent home. Your family will be in our prayers.
Praying for you and your family, and that sweet little girl! I know God has a plan and is watching over you all.
Praying for precious Lake, you, and your entire family. You can tell by your words that you are so strong, and little Lake will be strong too!
So I found you through my friends Pam and Becky, and just wanted you to know that I’ll be praying for your little one! My son was born with severe heart defects nearly two years ago. The time we spent with him in the Cardiac ICU was the hardest, but also the holiest, time of my life. Please let me know if there’s anything else I can do! Praying for peace and healing!
Saying prayers for a strong Mama, whom I have no doubt will birth a strong Baby Girl.
Bless you, Arden. Bless you and your entire family.
Thank you Summer!
I’m so glad her surgery went well and I hope she continues down this path of healing. I pray that you are doing some healing too, emotionally and physically. I know we would do anything for our children, but it’s still okay to mourn the loss of your home birth and babymoon. Take care of yourself and I hope she joins you at home soon!
Thank you Carolyn!