Our sweet Kora Leilani...👑💪🏾💗7 months (4 months adjusted) today! Had our appt today where she once again blew away expectations. Weighing 17 lbs 13 oz, they could tell she loves to eat! & she does! She loves oatmeal, applesauce, broccoli, rice, pasta, bananas, chicken, mac n cheese and anything else we will let her try!
She is thriving and loving life! We have more milestones to reach but we are so grateful for her growth & can’t get enough of her sweetness! Happy 7 months, sweet girl!👑💕
Yay! A workout post!😍 I’ve realized I can probably record in class as long as no one else is in the shot!🤷🏼♀️
This workout was done as a split circuit workout, so the first three are done together as a circuit, then the second three, then the third three!
Box jumps- 40 seconds
Renegade push ups- 40 seconds
Stability ball bridges- 40 seconds
Single leg deadlifts- 40 seconds per leg
Push ups with hand raise- 40 seconds
Superman’s/back extension- 40 seconds
Thrusters- 40 seconds
Stability ball jackknifes- 40 seconds
Lower body Russian twists- 40 seconds
Take a 2 minute break between circuits. ~
I’ve been doing mostly bodyweight workouts during my class so as not to overtrain on top of my half marathon training. But most of these can be adjusted to add weight or can be substituted with a weight lifting exercise!
The school year is getting busy, save time to workout and eat right to be healthy, joyful, and strong!!🌱💜💪🏼
Feeling so incredibly grateful today 🙏🙏🙏
I didn’t manage to get up much to express during the night as I was so shattered from yesterday but today my supply has increased. I’m pretty sure it’s a combination of feeling more calm and having our girl closer! I’m still getting the script today because there is much more room for improvement!
I really believe that moving to Lyell Mac is a turning point for us. They are keeping an eye on her little head because her cranial bones are overlapping which they believe is likely to be as a result of prolonged ruptured membranes. This was highlighted at WCH and they are just keeping a close eye on it. She’s had a couple more vomits but it’s just her little tummy getting used to the feeds. After all she’s supposed to still be in my belly!
I think I’m gonna have to try get my hands on some smaller preemie clothes because the five zeros are still swimming on her. She’s just such a tiny little munchkin 🥰🥰
This journey is all about riding the waves and just doing the best that you can. But today I’m enjoying the chance to get some sunshine, making the most of the amazing coffee shop across the road and spending time with our princess.
Life is good 🤗🤗🤗🙌🙌🙌
The plan for Garrin is to maintain the status quo to give him time to grow. The plan is to wait the 8-10 weeks for the genetic panel results before doing invasive testing. The plan is for lung biopsy if the results are inconclusive and there is little to no improvement between now and then. The plan is to request a consult and possible transfer to Texas Children’s Hospital or Nationwide Hospital if December comes and things are the same or worse. The truth about this plan is that it comes with few, if any, certainties. “Lord, give me grace to bear my child’s affliction with patience and strength.” ~Nurse Buff
I’ll never forget how much I wanted to just turn off all the machines, take off all the tubes, hold you and just make it all better. My little flower, your daddy and I will never forget how hard you fought. #babydalia#babychavez nicu #preemie
A little different #transformationtuesday today. April 18, 2017 and tonight September 17, 2019. First time I finally got to hold my #preemiebaby and tonight she’s a big 2 year old who can sing her ABC’s and quite a bit of Country Roads, count to 14 (sometimes we make it to 20), knows her shapes and her colors, and is potty trained and has slept through the last 2 nights without a diaper or an accident in her big girl bed! 💖👣💜💪🏻
✨ Um ano atrás. Nós contávamos cada grama que Anna Victoria engordava. As tão esperadas 900 gramas foram alcançadas e logo poderíamos começar o canguru. Que alegria era chegar na utin e saber que ela ou tinha engordado ou ao menos não tinha emagrecido. Eu ainda tentava processar que eu já era mãe, mesmo não tendo passado por 9 meses de gestação. Havia um pouco mais de mês que nossa guerreira tinha nascido e eu já estava passando a fase do puerpério, então comecei a olhar as coisas mais pelo lado positivo e comecei a ter a fé, muita fé. E pensei: como minha filha luta pela vida. Eu não posso nunca desistir ✨🌈🙏🏽
Yesterday, 69 days after they were born, we finally took Rosie and Olivia home 🥰 It was a long and exhausting 10 weeks, especially since I returned to work 2 weeks after they were born. A lot of people didn’t understand my choice to do that however it wasn’t a wanting to go back, it was a necessity. If I hadn’t have gone back I’d have 8 weeks left at home with the girls. Alex and I have been very involved in all the girls cares from day 1 so nappy changes, feeding, bathing, giving them their medication and getting them to sleep is nothing new for us, neither is sleep deprivation thanks to having to wake up to pump milk during the night 💁🏻♀️ We did all the same things you would have when you took your babies home, we just had to travel an hour each way to see them. Now, they’re in the room next to me fast asleep and I couldn’t be happier 😁 Thank you to everyone for all your love and supportive messages over the past couple of months ❤️ It’s been a long journey and they still have a calendar full of hospital visits but for now we finally get to spend time together as a family 👨👩👧👧
Well it looks like Alexander wanted to share a birthdate with his brother(5/16). We welcomed our second little miracle on 9/16/19 at 6:54pm 3lbs 7oz and 17 1/4 inches long! Once again we are in for a NICU stay but this time is much different Alexander is already on room air and started drinking from his bottles we just need him to gain some weight and then we can come home. Daddy and I are completely in love! 💙
Our NICU Everything Box.... has it all. All the things we needed and used during our 110 day stay. Free Shipping with code NICULOVE all September during NICU Awareness month!
We travel a lot for therapy, but I also recognize how solid Conner’s team is here locally. We are so fortunate to have a team that believes in Conner as much as we do. They push him, know his favorite things and how to motivate him.
I know this isn’t always the norm for everyone and I consider us extremely lucky to have a team that is constantly learning and finding new ways to help Conner and kiddos like him. 💙💪🏼
September is NICU Awareness Month, which feels a little funny to say because we're aware of the NICU on some level just about every day. I never imagined I'd be a NICU mom, but our journey is so much a part of our family's story that it's hard to separate myself from that identity now. To some it may seem like we're dwelling in the past or holding on to the negative, but the truth is that the NICU holds such a positive place in our hearts. Yes, the hardest days of our lives were lived there, and to this day we deal with medical concerns and developmental hurdles and PTSD as a result of our time there. But Mike and I often reminisce about our NICU days, and while our feelings about Robbie's journey are difficult ones, our feelings about the NICU are all warm.
The NICU was our home for 129 days. The doctors and (especially) the nurses took care of us just as wholeheartedly as they cared for Robbie. And perhaps most importantly, they understood. They understood exactly what Robbie was up against, without us having to explain it. They understood the emotional toll of watching your child suffer, of living in so much uncertainty. They understood what we were seeing and living everyday in a way no one else could, and that helped us to feel less alone. We often joke that our first year out of the NICU was harder than our four months in it, and in so many ways that's true because we'd lost our NICU support system. I share the hard parts of our story because I think it's important to speak them out loud and get them into the light, for myself and for other NICU parents who are going through the same thing. But if we're raising NICU awareness, then I also want to call attention to our amazing NICU family. They helped us survive - all three of us - and we will forever be thankful.
It finally happened💔
Via’s trach came out. I wasn’t home, but Adam was. She was in her crib. I was on the phone with Adam and he yelled, “her trach is out, I have to go.” HOLY SH*T. I was dying inside not knowing what was happening. I called both of my parents to see if they were home and could run upstairs just to assist, incase Adam needed anything. I got home about five minutes later. Everyone was fine. Via was happy. Adam was a bit shaken. He ran to her and put that trach right in. He is seriously my hero. He SAVED our baby girls life tonight. My husband is amazing and I am so thankful for him!🙏🏼 Here are some pictures of just Adam and Via. Best daddy and daughter duo I know!
Happy #TherapyTipTuesday! We are now back from a wonderful trip to India and wanted to show you how easy our tips are for parents to do! This tip also uses a bolster but is for helping children transition to sitting. This tip is also great for helping with extensor tone! To perform this tip, avoid holding your child from the armpits because they will feel as though you are going to pick them up.
When presented with the situation of these precious twins, the "M" family called us and said "I can't shake the feeling that these babies are ours." A few days later, they found out that the twins' first mama had chosen another family, and they questioned everything. A few weeks went by and a diagnosis came through that this precious little boy would have potentially severe life altering issues from a malformation of the white matter in his brain. The family outside of MSAC that was originally chosen was fearful that they wouldn't have what was needed to meet the special-needs of this little boy, and his twin sister. The agency reached back out to see if there was any interest from our original families that presented the first attempt. The "M" family called once again and said "I told you! I told you they were mine!" They presented a second time and the rest is history! BUT IT GETS BETTER!!! Xander was born weighing 3 lbs 13 oz and Sophia was born weighing 3 lbs 12 oz, just a few weeks premature! A few ultrasounds and tests later, Xander's doctors are blow away at the power of prayer! The diagnosis given in uterus regarding the white matter of his brain is non-existent and he will flourish to live a completely normal life! We are ASTONISHED at God's goodness and are so grateful that He is still in the miracle working business! Please pray for the twins as they grow bigger and stronger in the NICU, their first family as they navigate big emotions, and the "M" family as they love big and well these precious babes! We are so in love!!! .
6 months ago our 11 day hospital stay in the same room was coming to an end and you were about to make your grand entrance. From the start you have been a determined, stress inducing, stubborn little human, all the qualities a preemie baby needs. We still don’t know why you came early, I expect you just wanted out and as we have come to learn it’s your way or the highway but you are the greatest gift the universe could give us. No pregnancy, no birth and no baby are ‘normal’ as I learnt on level 4 at the @theroyalwomens and I truly learnt the meaning of perspective. You find strength in yourself and compassion/ empathy for others having a harder time than you. Mothers reached out to me who I haven’t spoken to in years or have never met and offered comfort and support. My husband kept working while not missing a single night sleeping on a crappy blue ‘mattress’ next to me (just thinking of it makes my eyes water from sympathy pains) and made me realize how lucky I am to have him with me on this journey. People step up in ways I never imagined and I’m forever grateful. Perspective was my lesson. When the anxiety attacks, panicked thoughts and self pity set in, I learn’t the humbling lesson of perspective for the women crossing their legs at 23weeks and praying for a long hospital stay. I say all this because I think sometimes we get fixated on the horrors and sadness but from 5months and two weeks ago and every single day after that I’ve learnt that people are amazing and loving and supportive and kind ❤️ and that my kid is fricking awesome because not only is she stubborn and determined but she is loving, sweet and loves a good chat just like her father 😍. Thank you to everyone who reached out, prayed or spread a thought. Also how bloody great are nurses, for anyone who has stepped foot in a special care nursery like at the Royal or Kareena they are just earth angels with wicked senses of humor. So cheers to 6months, to preemie babies and their health, to the strong mummas who birth them, to their partners who support them and to every parent/ guardian because it never goes to plan 🍷 now go have a wine you’ve earn’t it. Thankyou universe for Andie
Phoenix Diaries - 17 September 2019
Mummy has really pushed me during my physio activities today. I worked on sitting and trying to keep my back engaged. I have a tendency to 'flop' forward whilst I'm sitting. Sometimes it's because I try to reach my toes, sometimes it's to help me trump but largely it's because it's such hard work holding up my back and head!!! Mummy helped me by using noisy toys to attract my attention upwards. She's so cheeky- distracting me like that so that I work harder 🙊
We had our telephone appointment with SALT and Dietetics today. They were pleased to hear that I am eating purees from the spoon and would like me to do this twice a day for the next week. The aim is to gradually eat enough puree to have a sachet of neocate a day but for it to not fill me too much that I miss breast feeds.
Alison spike to Mummy about my bottle aversion and it was decided to not continue trying as Mummy and I worked so hard to breast feed (and now wean) and we don't want it to affect my willingness to do either.
I've listened to lots of music again today and even held and shook my rattle. It's the heaviest thing I've held so far 😊
All in all it's been a fun day with lots of playing, grabbing and exploring (Grandpa's head 🤣), but I seem a little uncomfortable tummy wise again. Hopefully it's just my body getting used to different foods and not any new allergies 🤷♂️ Rattles and kisses
Lord Phoenix 👌
**OFFICIALLY ROOMING IN**
Adam and I will stay in a room with Isaiah tonight, no monitors no nurses just us! As long as all is good tonight, WE WILL GET TO COME HOME TOMORROW!! Yet again I was reminded of the miracle that isaiah is by one of his doctors and multiple nurses today. To have come this far at 35 WEEKS with pprom is amazing!!!!! Hes a rockstar 🤩🤩🤩 thank you, God!!!!
Blayre Marie is finally home. After 26 days in the hospital and 20 days in the Nicu. She was born at 33 weeks at 2:33 am on 8/28. As predicted she was 5 lbs 1 oz. I was on the verge of liver failure with zero symptoms except extremely elevated liver enzyme levels. My children usually come within 2 days of their due dates, so her early arrival definitely was a plot twist.
I Ended up begging for a c section after a barbaric failed 24 hour induction (foley bulbs are worse than pitocin). The epidural failed as well so I felt the scalpel tearing away at each layer of my skin and the digging into my open flesh. Future mama’s, I hope you appreciate these details 😩. Thankfully, my screams were finally taken seriously and I was sent to another dimension. I am grateful I wasn’t put to sleep so I could hear my babies first cries.
I am so grateful to everyone who checked on us, gave us gifts, and prayed for us! I appreciate my family for stepping in for me with Bryton and Braylon while I have been gone.
This journey to bringing Blayre Marie earth side was epic. I am overjoyed she is home. She has quickly reminded me to just go with the flow. We kept with the B name in honor of my cousin Brittany. Marie was my maternal grandmother’s middle name and most of my female cousins share it. “Legacy, ah, we're part of something way bigger.” Now back to pumping this milk 🥛.... #nicumom#nicudad#preemie#33weeker#nicuawarenessmonth#nicugraduate