“Humor makes the journey so much easier….”
Mimi Meisels, Trisomy 18 Mosaic, 07/01/2016, Spring Valley, NY
Update 8/17/2017 – on April 2nd Mimi left the Hospital after a 3 month stay. Mimi is currently vent dependent at all times, and needs to be catheterized every 4 hours. We love her so much, and we had to make a very difficult decision of taking her home with 24 hr nursing or placing her in a facility. Facilty decision weighrd over the pros (for us in our case) and Mimi was placed in Sunshine Childrens Home in Ossinig NY which is a 40 miniute drive from our home. Mimi gets awesome care there. She is thriving and getting lots of therapy. We visit her 2 – 3 times a week. Mimi vocalizes with us (which is pretty rare on a trache) she smiles and returns to us the love we shower her with….
We celebrated Mimi’s first birthday on July 1 2017. It was a huge bash held at Sunshine Childrens Home for a little girl who the doctors said “Will not Live….” Way to go Mimi!! We love you to the moon and back!!!
Original story – Our Journey began at our 20 week sono, when the doc saw some small abnormalities, which if they were all separate on its own, there would be no concern, (fluid around heart, empty stomach, short femur bone, blood flow to brain sluggish…) however all pooled together, raised his brows in concern. We switched to a bigger doctor in a bigger hospital and after a few sonograms he suggested a blood test at a genetic counselor which would rule out any genetic syndromes like downs, Trisomy 18, 13….. blood work came back with 93% chance of my baby having Trisomy 18! A amniocentesis at 34 weeks confirmed Trisomy 18!
At 35 weeks my water broke and labor followed thereafter….. I had discussed my birth plans with the hospital NICU team prior to going into labor, so we were on the same page during birth! However when I was in active labor, the head of the NICU team came in to tell me she was “upset” with my decision to have my baby intubated if needed after birth, she said why would you want to make her live if Trsiomy 18 babies are not meant to live???? That was my introduction to life of Trisomy 18! I have never looked at my baby as Trisomy 18, I looked at her as my precious baby, the 6th child of my beautiful family who happens to have Trisomy 18. That moment when the NICU head said that sentence, the drive in me started, I will fight for Mimis life no matter what!!! We will prove to the Doctors, a baby with Trisomy 18 is worth having!! The NICU head wanted me to switch to a different hospital (I was in active labor at that point) I said that does not make sense, baby will be here any minute….. untill I “gave in” and said my baby does not have to be intubated after birth she allowed me to stay!
Mimi was born weighing in at 3 lbs 3 oz. She did not need any help breathing… she took her first breathe on her own, no need for intubation! Mimi was born with Trisomy 18 mosaic, esophageal atresia, 2 small vsd’s and her right kidney was a double kidney. She was transferred to a bigger hospital when she was 12 hours old. We saw Mimi was fighting to live and there was no chance for survival among “them”.
The new hospital staff were so informative, and were completely comfortable with my decision to do whatever is needed to keep Mimi alive! Mimi went through part one of the esophageal atresia surgery and also had a g-tube place so she can be fed.
Miraculously Mimi grew beautifully, she gained weight nicely….. and stumped all the doctors! They said: “Mimi has busted our statistics, we will throw our books away and let Mimi lead us”! And lead them she did!!
It was a long process of letting Mimi grow stronger to have the full esophageal repair, (she was 5 1/2 months old at the time and in the NICU since birth) We waited for her to grow bigger “in style”, Mimi was the lil’ fashionista in the hospital! Every morning the nurses came by Mimis room to see whats shes wearing today….. if was helpful that Mimi was so popular on the NICU floor…… we were spoiled rotten!!
We even brought in a photographer a day before surgery to take professional pictures of Mimi.
Doctors warned us Mimi will be very sick after surgery, we should be prepared! Mimi went for surgery, (wearing a huge bow in her hair) We prayed….. and waited…… and out came our feisty little girl…. all complications foreseen were all but a scare! Once again Mimi came through as a strong little girl who wants to live!! December 22 Mimi left the hospital at 1 week short of 6 months!! What a precious Holiday gift it was!
Unfortunately just 2 1/2 weeks after Mimi finally left the hospital, she had a seizure, affiliated with fever, she was rushed to the hospital where she had a EEG done and it was confirmed that Mimi does have seizures. She was put on meds and sent back home after a 5 day hospital stay.
However, it looks like when Mimi was in hospital she contracted a respiratory virus, called hMPV and 5 days after Mimi was home she was rushed back to the hospital with respiratory distress. Mimi was intubated and once again she was fighting for her life…..
Since extubation failed, we decided to put Mimi on a trache, (which was very hard for us…. we so badly didnt want to get to this point) but we were told Mimi will have more stability with a trache. (if its beneficial for MImi, we look away) Since Mimi is a fighter she fights her vent, she gets these agitated spells where she desats quite low, heart rate goes up, up….. hospital put her on meds to help keep her calm….. which helps!
Currently Mimi is in hospital (for over 8 weeks now), we are trying to get 48 hours of “good behavior”, which hasn’t happened yet, Mimi keeps them on their toes… she has a trache, she needs to be catheterized every 6 hours to help her urinate since she has that extra kidney which causes urine reflux (she constantly had UTI’s, and catheterizing has helped keep UTI’s at bay most of the time) Mimi smiles, (she was cooing before she got sick, now with the trache we cant hear her sweet voice)
Mimi is a gift we do not take for granted!!! As Mimi being child #6 we know to appreciate all the good we have in our lives……
Our Message to all Parents going through what we are, Humor makes the journey so much easier…. nurses love having Mimi…. we joke with them, we always have treats for them, Mimis has a huge variety of headbands, and funny onesies which they love dressing her in, We are always thankful to the hospital staff!!!
We are not in control of the path Mimi is taking, but we are in control of how to accept it!!
Need a dose of inspiration or a listening ear?? feel free to contact me!