Missy's Moments

Journal entry by Jordan Heyer — 1/31/2016 Well, Brielle continues to do very well. She's still on the ventilator however they weened the nitric oxide off completely, so she is breathing what you and I are breathing and seems to be tolerating very well so far. Her blood gases have remained consistent, and her feedings have increased by a cc every two hours. Her respiratory problems have seemed to kind of subside for the time being, so much that there is talk about coming off the ventilator all together and just being put on the c pap. It's incredible really, her ventilator is set to take 35 breaths a minute but she's breathing on her own at about 60. She is so little but fighting so hard, the reconstruction to her heart is the next big step and that won't be for awhile because she still has some growing to do before she can tolerate that. Thank you again for all the prayers (taken from CB)

Journal entry by Missy Eagen — 1/29/2016 Grandma Missy here with nothing but praises to report! So how many nurses, respiratory therapists, and family members does it take to get one 2 1/2lb baby girl cuddled up to her Mama!?!? Today Jordan and Beca found out the answer. Up until today Jordan and Beca had only held her in her isolate during her cares. Today one respiratory therapist, 3 nurses, Grandpa Shawn to man Bennett and Jordan helped get Brielle out and on her mommy. 💕 She did great! Tomorrow is Dad's turn and I know he's excited. The vent continues to go well, her blood gases are right where they need to be, her feedings resumed yesterday and are going well, basically she continues to wow us and the doctors. We are all so grateful for the prayers as Brielle continues to live the meaning of her name- God is my strength. Big brother Bennett turned 1 today! We celebrated with an 'unofficial' party since I'm out of town the rest of the weekend. Bennett

Journal entry by Jordan Heyer — 1/28/2016 Guess who's off the oscillator?! Brielle is on standard ventilation as of about an hour ago! Her blood gases have remained consistent enough and her oxygen stats have been high enough that doctors thought it was time, and so far they're right. She is tolerating it well her oxygen stats are staying where they need to be and they will be doing blood gas tests quite frequently just to be sure things are where they want them. This means we can hold our baby finally :). This comes just two days after we were sat down and told that the next few days would probably tell which direction Brielle would take and so far it's been slowly uphill. All we want is progress not perfection and that's what we're getting. She also started eating today. I'm noticing in the NICU life there are a lot of ups and downs and some days nothing changes. Today was a great day for Brielle. Her rollercoaster ride is far from over and the

Journal entry by Jordan Heyer — 1/27/2016 One week ago we were told we'd be lucky if Brielle made it out of the delivery room, today she is 7 days old. There is still a very large amount of uncertainty of what the future for her looks like, but for every morning that clock hits 6:11am and she's still with us we are truly blessed. At this point there isn't really too much anybody can do physically to help her, she is just to small. Short term goals at this point are just to put some meat on her bones so the doctors can make the repairs she needs. The heart repair is going to be crucial, and hopefully at some point soon those little lungs start tolerating life outside the womb a little better. She will be starting a round of steroids today that'll hopefully make that happen a little sooner. Besides that, there is not much new information. We just keep praying and thanking god for the days we've had and the days we are so hopeful that come. As her parent

Journal entry by Jordan Heyer — 1/25/2016 Today is one of those days where staying positive becomes very challenging. No set backs or anything, but not really any progress either. After her transfusion yesterday, doctors expected that her blood gases would kind of normalize, however that didn't occur. So now the big question of why pops up again. Is it respiratory or metabolic. That answer at this point is unknown, we're hoping for some answers either later tonight and if not tomorrow morning. That puts a definite delay on coming off the oscillator, which is unfortunate, but she's still with us and that's all that matters at the end of the day. She's five days old now and each of those 5 days has been a blessing and a gift and we are so thankful. They've also been a very scary five days, we just try to remember it's in God's hands and he has a plan. Thank you again for all the thoughts and prayers. (taken from CB)

Journal entry by Jordan Heyer — 1/24/2016 Brielle now weighs 2lb 7.2oz. That's 4.2oz larger than her birth weight. Hearing the nurse practitioner say "Brielle is stabilizing" is just an answer to all of our prayers. She still definitely has a massive journey ahead, one that could be described as rollercoaster. But that fact that she isn't digressing just gives us so much hope. She received her first red blood cell transfusion today, not because she is loosing too much, but all the testing being done daily is just a little too much for her small body to keep up with. Once that's done if everything looks ok they are going to try the standard ventilator. Hoping she tolerates this change and doesn't get to upset about it. The ultrasound done on her brain yesterday came back negative for any blood on or around her brain. Blessings. (taken from CB)

Journal entry by Jordan Heyer — 1/23/2016 Tomorrow is a big test for baby girl, she will be coming off the oscillator and on to a standard ventilator. This means going from constantly receiving oxygen to taking about 70-80 breaths per minute. (600-700 with oscillator). We are really hoping and praying she tolerates this change. Docs don't really have a prediction on how this will go but please pray for the best. She had another ultra sound on her brain today, radiology reports from that will be back tomorrow. All in all we are very happy with the way things are going and appreciate all the good thoughts and prayers. (taken from CB) Lily Lamb and Brielle

Journal entry by Jordan Heyer — 1/22/2016 Upon speaking with doctors this morning Beca and I are delighted. "She's doing better than yesterday" was one of the first things Doctor Colby said this morning. She had a bacterial infection at birth that's been treated and cured ( E. coli). The endocrinologist came yesterday and did there tests on her pituitary glands to see if they are producing adequate amounts of the hormones her body needs to survive. The only one that is low are her cortisol levels but that may just be because of the prematurity. We won't really know until later on. But those words, "later on" keep coming out of the doctors mouth which is giving us so much hope. It's really very scary but we are so hopeful and putting so much faith in God to do the right things no matter what that may be, and to show the doctors the best way to help our baby. Thank you for the prayers we are so grateful, and please keep them coming.

Journal entry by Jordan Heyer — 1/22/2016 Brielle our sweet baby, we love you so much. Life's now so different, since that first gentle touch. It's scary, yet rewarding, and the love it's the best. You've made it two whole days, keep fighting but please rest. This journey will be long, but you've got it girl no doubt. So many prayers that surely, god, will pave the right route. (taken from cb) Brielle 1 Day Old

Journal entry by Jordan Heyer — 1/21/2016 Yesterday was a very scary day for everybody, Brielle included. Statistically with premature birth, the first 24 hours are the hours that doctors fear loosing baby the most, and we're past them. We spoke with neurology and cardiology this morning and there are still a lot of unknowns, mostly for the fact that even a "healthy" preemie isn't developed enough to really be able to make a set prognosis. The things they are seeing in her brain are concerning, but until she is a little older, how concerning can't really be determined. In other children with the same defect (lobar) holoprosen cephaly, they see things like developmental delays or maybe some motor skill delays. At this point she is just not stable enough, nor would it be very worthwhile to complete further imaging. For the cardio side of things the VSD and DORV repair will be put off until she is not relying on these machines to breath for her.  (taken from

Brielle was born January 20th at 6:11am. She came at a very young age of 27 weeks and weighs 2.3lbs. On top of the prematurity, she has several defects which include a pretty significant VSD (Ventricular Septal Defect), as well as a Double Outlet Right Ventricle. It's a rare defect in which the pulmonary artery, and the aorta, both rise from the right ventricle. It's serious, yet repairable by surgery. She also was in uterine with very low amniotic fluid which really impacts lung development. The heart and lung issues along with the prematurity really make for a scary situation. Different doctors had different opinions and most of them made it clear before delivery that life was not very likely for my baby girl. Thus far she has defied all odds and is still fighting strong as ever. She isn't breathing on her own but that was to be expected. Her lungs are however retaining oxygen and giving her body what it needs. Her heart is pumping at a pretty consistent rate and although