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June 2014 Moms
dmizak
member
Kolt Steven (loss warning)
dmizak
member
I didn't want to ruin everyone's morning with this news, but I wanted to let you guys know who might have been wondering what happened.
They did the lung biopsy on Monday the 19th of May. It took 4 days to come back as inconclusive from the hospital pathologist and then another 5 days for a pulmonary pathology expert to come back with the diagnosis of lymphangiectasia.
If you look it up, it's crazy. The first things that come up are articles on dog intestines, that's how rare this disease is. Kolt had pulmonary lymphangiectasia. His lungs were more lymph vessels than lung tissue and they just poured lymphatic fluid into his pleural cavity. He had over 600ml of fluid drain from his chest tube the last two days he was with us. There was nothing they could do.
We had to make a decision of when we wanted to extubate him and let him go with God. I couldn't even believe we had to tell them when we were ready. How were we ever going to be ready? But we waited until our family got there so he could be surrounded by love from his parents, grandparents and aunt and uncle. He actually went pretty peacefully. I was so scared that he would be scared and in pain. But he took his paci and went to sleep in our arms.
The best blessing was that he looked so good his last day. He had lost a lot of puffiness since his chest tube was draining so much fluid. He looked like my baby. He got to open his eyes for the first time in weeks. He was awake almost the whole day. All the doctors and nurses who participated in his care came in to see him, and he recognized all their voices. He would just look around at everyone, it was like he was saying goodbye too.
I really appreciate all of your support throughout this. I really believed he was going to be fine and this was going to be done crazy story we told him when he grew up. I think that's why I'm hanging such a hard time with this. It's like I feel like he's still in the hospital and we're just not there. One day at a time I guess.
Here's what I wrote on Facebook if you want to keep reading.
Kolt Steven was born via emergency cesarian section at 32 weeks 6 days on April 13th at 11:30 am. He was diagnosed with a condition called hydrops from an ultrasound two days prior and after 6 weeks it was confirmed by review of a lung biopsy that he had an extremely rare incurable pulmonary lymphatic disease. This disease is not something a person can live with.
On May 28th, after spending 45 days putting up a good fight, Kolt Steven was taken off the ventilator and passed away peacefully in his Mom and Dads arms and surrounded by people who loved him.
It would be easy to be angry, the loss of a child at any age is senseless. This is not something we will ever get over, hopefully in time cope with it. For whatever reason, God decided that Kolt was not meant to live with us here on earth, but rather live in our hearts. We have to believe that God needed a wild little B------r boy up there in heaven. Thank you to my brother in law for that sentiment.
Kyle and I feel so incredibly blessed and honored to have spend 45 days with a beautiful, sweet, and feisty little boy who by all reason should have passed in utero. We were so lucky to get to know him and spend those days with him even though it made it near impossible to say goodbye.
Thank you to our family who came several times at the drop of a hat to support us and help us through these last several weeks. Thank you to the amazing staff at Rocky Mountain Childrens Hospital of doctors, nurse practitioners, nurses, and respiratory technicians who took such good care of Kolt and us. We are forever grateful for your professionalism and kindness.
Congratulations to all you June Mamas, and especially you preemie Mamas. I don't know the updates for you girls, but I will read them eventually. So if you get random comments months down the road, it's probably me.
This discussion has been closed.
Re: Kolt Steven (loss warning)
I am so sorry for your loss. My prayers are with you and your family for some peace and healing during this time.
My Ovulation Chart
BFP #1 3.16.12. mmc 5.7.12 at 11 weeks ~Avery Cameron~
BFP #2 12.12.12. mmc 1.22.13 at 10 weeks ~Theodore Michael~
D&C #2 Chromosome analysis results: Translocation Trisomy 14
My RPL Testing: Homozygous MTHFR, normal karyotype
DH's karyotype results: Robertsonian Translocation 13:14
BFP #3 9.10.13 mc at 4 weeks~Our little May Flower~
BFP #4 10.13.13- Our Rainbow Baby, a little girl, arrived June 25, 2014!
Married DH 7/30/11
CSC arrived 5/7/12
CHC arrived 6/2/14
I'm not new. I just hate The Bump.
Oct 21/13. Beta 360 @ 16 dpo
Oct 23/13. Beta 749 @ 18 dpo
Nov 24/13. Saw HB (141bpm) & baby wiggle around via ultrasound @ 9w5d due date changed to June 23!!
Dec 6/13. Heard HB (122bpm) via Doppler at OB @ 11w3d
Jan 9/14. Heard HB (124bpm) via Doppler at OB @ 16w3d irregular beat
Jan 29/14. DH felt kicks for first time @ 19w3d
Feb 2/14. Saw baby via ultrasound (quick scan in ER) @ 19w6d
Feb 6/14. Heard HB (126-134bpm) via Doppler @ 20w3d normal beat
Feb 15/14. AS - baby looked great (measured 1w small) and would NOT let us see sex! @ 21w5d
Feb 20/14 3D US - its a GIRL!!!!! @ 22w3d
Feb 27/14. Repeat AS for more pics, HB 124bpm @ 23w3d
Mar 6/14. Heard HB (130bpm) via Doppler @ 24w3d
Thoughts and prayers to you and your family.
DD1: June 2014 - VBM4lyfe
DD2: October 2016
DC3: coming May 2019
Baby #1: expected June 2014
Me: 33, HSG & b/w normal; partial septate uterus DH: 33, SA good but low morphology (3%)
Started trying to make a baby Apr'12 Aug'13 DX: Unexplained Infertility
Sept'13: 50mg Clomid + IUI #1 (13m + 11m post wash) CDs 11&12 + 200mg progesterone 3x daily = BFP! Beta 16dpIUI = 391 EDD 6.14.14 Delivered 6.13.14