A true miracle baby

Arora Lynn. 3 weeks 5 days old today

This is long but I hope it helps someone else cuz being s ftm is terrifying!

This sweet Little girl has officially defied all odds and hurdles put in her way. She is our first child and we love her so much. At 17 weeks my blood work came back revealing I was a high risk carrier for spinal muscular atrophy and was told I need to have my husband tested and if he was a Carrier as well, which they said was very slim chances , that she had a 1 in 4 chance if having actually atrophy when born. Turns out my husband was also a carrier , was told 1 in 50 are carriers. Our luck. So naturally I was a mess the whole rest of my pregnancy worrying about it then at 25 weeks I developed incredibly itch swollen hands , turns out it was another rare thing called cholestasis , where basically my bile acids are poisoning the fetus and they baby has to be born before 38 weeks or u risk still birth. I had to fight my ob to test me for this as it’s “ very rare and only 1 in 1,000 pregnancies develop it”. She tried to say it was Carpel tunnel. She was wrong! I had to do twice weekly stress tests along with steroid shots to help her develop a little quicker . She was born at 37 weeks 2 days. After a 52 hour induction that didn’t take. I opted for a c section. She was beautiful , 7 lbs 2.5 oz no nicu time. We stayed for three days in the hospital and she had many tests done for her blood to check for atrophy and were told two weeks for results . In those two weeks out Little angel seemed very irritable and she was losing weight like crazy . After her second pediatric app and she was a pound and a half smaller than birth weight she was given one more week to gain 7lbs or be diagnosed “failing to thrive “ I knew something was wrong cuz she always seemed hungry and wanted to breastfeed. I called a specialist and she came out and found my poor baby had both a severe tongue tie and three lip ties which was why she was not gaining weight. She was only transferring .8 oz at the breast for a 40 minuet feeding . My poor baby was basically starving to death but because everyone kept telling me “ it’s normal for them to lose weight” I didn’t take action sooner and now I feel awful for it ! When the lactation lady left , who advised I keep breastfeeding her and not supplement , I trusted my gut and said no enough is enough she is starving. I supplemented her with formula and started pumping breast milk as my supply is low . She gets bottled breast milk in the morning and then again for dinner and formula in between . She had her surgery yesterday to revise all the ties and we also got her blood results back that she was negative for atrophy !!! 🙌🏼 then we had her pediatrician app and she gained 14 oz in 5 days and passed her birth weight ! Mama knows best. Trust ur instincts ladies, doing so with both the cholestasis and with the supplementing .