What a journey these past two months have been for our family. Brynlee joined our family the 11th of July, but did not join our home until August the 6th. Our hearts have fluctuated from being full of love with her arrival, to the fullness of fear a day after she was born. She arrived in a hurry, and we spent that Wednesday evening and Thursday morning loving on her…but I knew something wasn’t right.
Brads working shift work, so he was sleeping much of that Wednesday evening and I didn’t want to wake him incase I was simply overreacting. but she wouldn’t eat, she acted hungry, but couldn’t eat. she started vomitting…first clear which could be completely normal after being face up in the birth canal…but then it started changing to yellow and to green. she couldn’t lay flat, she just kept choking on her vomit. and by Thursday morning I was telling the nurse all of these symptoms and I added to it that she hadn’t pooped yet. our nurse took a look on her face of a calm panic. I never knew there was such a face…but that’s exactly what it was.
she quickly left the room and came back with a suppository…two suppositories…then even spent 10 minutes with a thermometer trying to stimulate her bowels to poop. she tried to help me get her to eat.
nothing.
she called the pediatrician (who I wont go into detail but he was less than impressive) and we urged him to take an xray. so he reluctantly did. two words and most of you will know exactly the ending of this blog…
MECONIUM ILEUS.
After seeing the xray the Pediatrician immidiately called Doernbecher Panda Ambulance team to come for our newborn daughter. Everything happened so quickly. I remember just crying. brad of course was awake and knew what was going on and he just sat by me and I just sobbed. the only thing running thru my head was how mad I was that God was going to take another child from me. she was sick. I couldn’t help but to think she was dyeing. I could not stop crying.
I will spare many details because I will link her Caring Bridge site HERE so you can go there to get all the details of her journey (you have to create a login)
But long story short…we tried for 5 days to get the meconium to unblock…to no avail…by monday, at 5 days old our sweetie was rushed to surgery. and the next few weeks we spent giving her TPN for nutrition, praying her GI would start working, teaching her to feed and then ultimately received the genetic test results that she infact has
CYSTIC FIBROSIS…
yES… the disease that stole our son now has it’s grips on our sweet daughter.
26 days we spent in the NICU, not many people knew. Our hearts are just now at a place of full acceptance and somewhat of peace. We’ve been home a month now…her first month was a blur…where once again that life that we thought we left behind came back to haunt us. I was with Brynlee 50 miles from our home, in the same hospital, with the same nurses and Dr’s who cared for Conner…which was extremely difficult…while my husband and our sons were at our home…trying to make sense of it all…
I will leave this post now with some pictures from her first month.
This is why there was not many pictures on facebook…she had too many tubes and IV’s that I couldn’t crop them out…we really appreciated the space and time to process…
she’s our warrior…
and while our hearts are so broken…she is a joy. I’m thankful she was diagnosed a full year before Conner ever was…so therapies have already begun and she has been to the CF clinic twice already in a month and we as of now are focusing on her nutrition. in her we are HOPEful…and just know that Conner was with us in that NICU, the same one he was in at birth…he showed himself to be there with her beautifully…in ways way too beautiful to share…so in the pain of it all…there was a lot of love…
Be blessed…
(in order from first born and on…)
her beautiful “birth mark” will always prove to those who know her just how strong she really is!
Love Love Love
I'm really sorry she had such a rocky start to the world. She's beautiful and such a trooper. I can't imagine having another child diagnosed with the same thing Connor had.
ReplyDeleteI've followed your blog through tears for the last 2 years, but have never left a comment. I am so sorry to hear it started this way. I can only imagine the fear and dread that came along with this news. She is absolutely beautiful and I'm convinced God's goodness will continue to be evident in her sweet little life, just as it was in Conner's. As a sister in Christ, remember Colossians 1:16-17.. "For by him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities—all things were created through him and for him. And he is before all things, and in him all things hold together." What a great reminder about our little ones. I'll be praying for your sweet family, thanks for sharing your story with all of us.
ReplyDeleteDana
She is absolutely beautiful! I LOVE the smiling pic. Praying for your family! xoxo
ReplyDeleteI too have followed your blog for the last few years but never left a comment. I was so excited to hear that you were expecting a little girl. I was checking your blog every day for months in hopes to see an update on your beautiful addition to the family. She truly is so beautiful and I know she is here to make a difference. Conner sent her for a reason and Miss Brynlee will make a difference in the CF world. She will prove that you can live a normal life with CF. She is beautiful is every way and is a fighter. I'm so sorry you have to go through this once again, but please know you have an army behind you and that there is lots of hope. We are all praying for you and your beautiful family. Please don't lose HOPE and remember that Miss Brynlee HOPE will kick CF's a**!!!
ReplyDeleteOh, Sarah, I can't begin to imagine how devastating it must have been to realize that you have to fight this disease again. But I know, from reading your blog for years, that Brynlee is so blessed to have you as her mother. I will be praying for all of you. She is so beautiful and God is going to do amazing things in her life.
ReplyDeleteI'm really sorry you are going through this. As if once wasn't enough.... My own son was born with meconium ileus and was in the NICU for about 25 days. And now, he is taller than me, at age 14, almost an Eagle Scout, happy and (considering he has CF) healthy. There is so much hope now with treatments and much hope for a cure on the horizon. Take one day at a time and know that hope, and life, awaits you. Prayers and light as you go through this journey.
ReplyDeleteAwww... She is a beauty! I am sorry to read she has got CF, but lucky for her you know all about it and can give her the best of care. I can not even imagine the flash backs you must have experienced, :( but God will not give us anything we can not handle, there must be a reason why he chose us ha? I am really sorry you have to start living with CF 24/7 again, but she is so adorable and I am sure she will love the fact that she was given life! <3 HUGs from this CF mom in Norway <3 HUG <3 HUG <3 HUG <3
ReplyDeleteSorry but I just don't understand how a parent knowingly has more children when they know they are passing on such a devastating disease. I'm praying for that innocent baby girl.
ReplyDeleteWith all due respect, neither one of us comes with a warranty, with that said then all of us, parents, bring kids to this world knowing that eventually they are going to die...after all life is fatal.
DeleteSad to read this comment...shame on you for being so insensitive!
Anna mom of three, one 19 with CF
I, too, have followed you, but never commented. I'm sorry you are walking this road again. Prayers for you and your precious family.
ReplyDeleteKaylee114: I don't understand how you could post a comment that is hurtful and unnecessary. THINK before you speak/write
Is it:
True?
Helpful?
Inspirational?
Necessary?
Kind?
Joan, I agree with your statement about Kaylee114. Her comment was out of place and unneccessary. I feel sorry for a soul who's so judgemental. I pray for people like that.
DeleteEveryones right to their own opinion is what bligs are for. Ive been asked that question before in having my other boys and my answer is simple: genetic disease ir not, every person in every pregnancy has taken a chance that their baby may not be "healthy" wether they present sick early on, or even later in life. I dont believe in a country that is built upon freedoms of choice, that anyones choice and ability to have a family should ever be questioned for that decision. We are a loving family, we take care of our children and provide for their every medical need. Many families with healthy children dont even do that. I hope judgements be left to the only one, whose opinion is the only one who matters. And i pray for every family making the decision to add to it, whether healthy or not. Be blessed.
ReplyDeleteEveryones right to their own opinion is what bligs are for. Ive been asked that question before in having my other boys and my answer is simple: genetic disease ir not, every person in every pregnancy has taken a chance that their baby may not be "healthy" wether they present sick early on, or even later in life. I dont believe in a country that is built upon freedoms of choice, that anyones choice and ability to have a family should ever be questioned for that decision. We are a loving family, we take care of our children and provide for their every medical need. Many families with healthy children dont even do that. I hope judgements be left to the only one, whose opinion is the only one who matters. And i pray for every family making the decision to add to it, whether healthy or not. Be blessed.
ReplyDeleteHi Sarah,
ReplyDeleteI have followed your posts on and off. My son, Weston, has CF and came into the world in much the same way as your beautiful daughter. He shares the same scar on his belly. I will pray that your daughter continues to heal and get better. I'm so sorry that after such a tremendous loss, CF has come back into your lives. Please know you have many people supporting you.
Jenn Gil
Wow. Why am I surprised at people's lack of sensitivity and love? Normally I would not add to this but My dear friend doesn't need more hurt. Everyone is entitled to opinion but there is a time, place and appropriate people to voice it to. Are you kidding me? I assume you haven't experienced a major trauma ad if you have I pray you can learn a more loving way to reach out to others. There are books in etiquette. Google.
ReplyDeleteP.s. I love you jones family and could brynlee get any more beautiful????? Praying for you always.
ReplyDeleteMuch love to you and your family Sarah! Prayers for Brynlee's healing. Keeping up with your blog I know how well this little girl will be taken care of. Sending strength, love, and ((HUGS))! Also, for the naysayers that stumble upon this site - read back through her blog......this isn't her first rodeo!
ReplyDeleteAwww thank u for ur love brenda :) and amen janis...cowgirl up :)
ReplyDeleteSarah, Brynlee will be fine. We're at a very important threshold in Cystic Fibrosis. The pipeline is exciting, for the first time we have seen a med that actually corrects the defect. We will have CF beat soon...Enjoy your baby girl...soon you will go shopping with her, hold on to your credit cards!
ReplyDeleteI too am aghast at the incensitive comment..I have CF and i am so glad my parents chose to keep me..I just turned 56 years old and for some reason I am still here and yes sometimes its a struggle and you want to give up but there is not a day that I am not thankful for being here..I beleive a cure is just around the corner now and I will pray for you and your family..I have never seen your blog but now I will go and read it and thankyou for sharing your story and Brynlee is beautiful...
ReplyDeleteJust wanted to saw "hi" Sarah. Not sure how I missed hearing that your little beautiful peanut also has cf. I'm really sorry. We keep fundraising and praying for our boys, and will be doing the same for your family as well. Love to you.
ReplyDeleteSarah, Brynlee is beautiful, regardless of CF. I support your decision to have another child despite the genetic risk. My brother is a CF carrier and when him and his wife were thinking about having children I asked him what he would do if his wife tested positive for the gene. He said he would go ahead and have the baby. Why? Because every life is precious, and because he has faith that CF isn't the disease it used to be especially for newborns now. I am living and breathing fully with CF, and if anything it has made me a better person, and so it will make Brynlee. Certainly, this whole process must have been incredibly difficult for you, but from what I've read in your blogs, your family is strong and I hope Brynlee is blessed with a long full life! God Bless You and I am glad you have the strength to be firm in your decision despite the insensitivities of others.
ReplyDelete