Holding on to HOPE…

So now Brynlee’s journey is out in the open…and I’m glad that it is. I’m very glad we took the time as a family to spend together, in privacy, adjusting to all that has happened these past two months. but now it’s time for some clarification.

we do not and never have for a MOMENT regretted having another child. We will never regret that decision. Brynlee is an absolute joy, and although she had a rough beginning, that in no way determines her future health and outcome. Those in the CF community know very well that CF is a spectrum disease. It effects each individual uniquely and differently, and so although Conner's health was poor from the start, there is no indication or expectation that Brynlee’s health will be the same. It simply doesn’t work that way. It’s also important to remember, Conner had another disease on top of the CF that made his ability to move and clear his CF mucus impossible (which is what devastated his lungs)…but beyond that in my opinion, it was never his purpose in life to live beyond when he did. I wished that it was…lord knows we miss him every second of every day…but his purpose in this life doesn’t ever have to make sense to us…only to God. I have full belief that we will be with Conner again in the blink of an eye…and all the pains of his passing will become a distant memory to never be remembered again. hallelujah for that!

having her diagnosed with CF was very difficult…but we know this disease inside and out, far more than perhaps others even with the disease…we’ve lived thru the worst of it, and we’re still standing. we have watched the therapies improve and new therapies being discovered these past two years and we know that CF soon will be a disease of the past. and I will never regret adding sweet brynlee to our family…I’d rather LIVE…really LIVE life and give our daughter life…than live in fear of a disease, letting it continue to direct our families path…CF doesn’t have that power over our family any longer. we’ve already beat the disease, because we took away it’s ability to change who we are as people, and as a family. it used the most devastating attack on our family…but we fought harder and won. One day very soon when CF is cured…I will look at my daughter with great pride and great joy knowing that we didn’t let CF scare us from completing our family…and never having the ability to meet sweet Brynlee. I know that day is coming.

having said that…

emotions are ever changing for us. we put doernbecher children's hospital in our past. we closed those doors, and I never wanted to be there again. so watching her being put in that incubator, being transported by a respiratory therapist we know very well from our days at DCH (doernbecher children's hospital), being admitted to the same NICU Conner was in at birth, having many of the same nurses we had with Conner, and ultimately transferring her care to the CF center that was his as well, was and still is very difficult. it brings back our fight with him. it makes us remember with each smell of that sterile hospital the battle we never were meant to win. I remember it all. so much of cf I had forgotten, or blocked out, because I remember Conner with love and joy, he was so much more than CF.

in those first weeks with her in the hospital I would cry many times a day…I just didn’t see any of it coming. when we got to bring her home four weeks later, it took until recently to get into a routine and finally feel like we can do this…to get our heads back above water…and once again kick cf out the door of our home. it is simply a small part of who brynlee is…but it has nothing to do with what she will become. from birth she’s been more alert and wide eyed to this world…many commented on that continuously and she’s been smiling since two weeks old…big entire face smiles…and I know why. Conner’s very near to her. they are knit together and he is her protector. like Conner, I see a baby who looks to have an older spirit. a wiser than her age, soul just as Conner did, and just as I see with so many children battling various diseases. they seem to know more than we do, and as they grow, they appreciate life and breath more than us “healthy” adults do. there is something beautiful and unique in children with special needs and conditions requiring much care. and those who are lucky enough to be blessed to call them their own children know this as a fact.

because we are blessed.

whether or not brynlee’s cf will hospitalize her, or cause her bumps in her journey, or whether it will simply be two initials that cause us to go to a clinic once a month is yet to be known, but either way…brad and I are called to love her, care for her, and raise her as if those two initials didn’t define her. because they don’t. brad and I, and all other parents of cf children are blessed beyond belief. not everyone is strong enough to carry that burden, but we are. we were chosen…picked from a crowd of millions and millions of people, because we alone are strong enough to handle it. what an awesome privilege! what a blessing.

emotions come and emotions go…any diagnosis brings upon a sort of mourning or grief over what we thought we were getting into. I’m humbled to have a second chance to kick this diseases ass (pardon my french, but CF knows I’m fighting to win), to add a beautiful daughter to our family, and to honor Conner’s battle by watching Brynlee thrive and provide every single treatment possible for her, and this time around no is not an answer. we’ve seen the bad…we’ve lived thru the ugly but this time around we see a cure. we see victory. and just as her name suggests…in brynlee we see nothing but

HOPE

I dare you to truly LIVE…God did not give us a spirit of FEAR…but one of HOPE and assurance…

hold on to his promises…

26 days…

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

Miss Brynlee…a blessing in the rain…

July 11, 2012 marked a day that we will never forget as long as we live. My due date was the day prior, and upon seeing my Dr. and being 5cm dilated and not officially in labor, we decided to induce the following morning. Brad and I checked in at 7am (early!) and got the IV placed and set up for monitoring. Turns out I had started having contractions every 5 minutes but they weren’t painful, just a little uncomfortable. at 9am my dr came in and broke my water to get the induction rolling, we decided not to do IV Pitocin and to let my body see if it would get the ball rolling….and it did. I was visiting with my mom, my friend Trish and brad and around 10:30 I felt like the contractions were getting to the point where they were serious. I had the nurse check me and she said I was about 6.5cm dilated so I decided to have her call the anestisiologist to get some IV pain meds since I felt it was going to be awhile still….

well I was wrong.

about half hour after being checked I got up to go to the bathroom and BOOM! it was just what she needed to descend farther. I got back in bed and was in instant pain. intense pain…like don’t talk to me or I’ll bite your head off type pain (but I kept that to myself ) because when I’m in pain, I get very, very quiet and focused. the nurse rechecked me and within that 20 minutes I had gone from 6.5cm to fully dilated and a baby on the way! the anesisiologist came in and was able to place an epidural (very, VERY slowly and a little too chipper I might add)…doesn’t she realize it’s nearly IMPOSSIBLE to hold still during contractions that only have 20 seconds between them…STOP talking and start working lady! sheesh…anyway…the epidural was placed BUT never worked. I progressed too quickly and my dear baby was face up causing intense back pain, and being bone on bone like that blocked the epidural from working. lovely. it was a nice thought though…

so I started pushing and the room filled with people from the nursery etc and before I knew it my baby girl was laying on my chest and I felt instant relief. I did check to make sure she was infact a she…and I was shocked that she was an entire POUND lighter than both Hunter and Bradyn. She was 7.5pounds and 20.5inches long, born at 12:21 with an epidural that took effect immediately AFTER she was delivered hehehe…so I guess I got my monies worth .

 

She is such a love and we can’t imagine our lives without her in it! It’s like she’s always been here! We all adore her…and now we’re a beautiful family of 5 PLUS one <3 <3 <3 Connerman couldn’t have hand picked a more perfectly beautiful addition to our family. She looks just like him at birth…and in other pictures she looks just like both Hunter and Bradyn as well. A perfect combination!