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Preemies
Frustration, Vent, and Question about Newborn Screenings
I have so much to be thankful for but every few weeks I have a mini melt down because I hold it in until I cannot take it and today is my breaking point. I will first start with my question and then I will vent so that those who want to skip the venting can at least help with the question.
Question:
Has your preemie(s) failed the newborn screening from the state? Ella failed hearing and today we found out Sophia (5.5 months later) failed the genetic part. They had some confusion with Baby A and Baby B so that is why it took so long. The girls are identical but obviously know that they can have very different medical issues because of prematurity. So what causes you to fail the genetic blood work portion of the testing?
VENT:
I have been uber stressed since Ella went in the hospital 2 weeks ago. Thank goodness we are working to control this reflux and it is slightly better but we are still waiting for them to schedule the EGD (which should be done by tomorrow). My mother in law came to town less than 6 hours after discharge from a 4 day stay in the hospital. She met the girls when they were 4 weeks old and still in incubators. She said she didnt think they needed to be on medication, should not be swaddled, and stuck her fingers in their mouths. I let it slide because we see her 2x a year. I work during the day and DH works afternoons so we dont do daycare. So I was home alone all night with her. It is just usally me and the girls so I dont have to worry about cooking. I cooked 4 nights in a row and she had the nerve to get DH to call me at work to ask me what I was cooking for dinner. It was 2 pm. I was tired,she helped feed a bottle during the day but that was about it. So she finally leaves. My family comes in and just hangs out in my tiny 2 bedroom house for 3 days. Which again is fine because it was Easter Holiday but I just wanted to take a nap!
So yesterday was the big Easter fun day and there is a "family friend" that my Aunt invites to our family holidays because she has no other place to go. She is odd bird, is 27 years old, has family that is trashy, but asks my aunt if she can call her and her husabnd mom and dad, after they said no to that, she does it anyway. She is really possessive of them and she just gets creepy. Well she showed up yesterday which I was okay with because again she has no other place to go. She starts kissing all over the girls. I am okay with her holding (it really took a lot for me to get to that point) but not kissing. Im really close with my extended family and see them on a daily/weekly basis so it would be weird if I didnt come or not let them hold the girls. So I made a horrified face when she started to kiss Ella and my aunt has the nerve to call me today and get on to me about it and making me feel bad. I told her that I am the parent and I can decide who I want to kiss my babies and who I dont, end of story. I am just so sick of having this happy face. I am so thankful for my girls but it is hard and I am tired. I just need a break. DH honestly tries his best to do as much as he can but he is having trouble keeping up with our crazy schedule, chores, work, us. I try to give him time for himself so that he wont get burnt out but that adds more stress on me. So, I just need a mommy day to rejuvinate and I dont see how I can swing that...
Thanks for the vent/question.
This discussion has been closed.
Re: Frustration, Vent, and Question about Newborn Screenings
I completely understand where you are coming from. I don't think anyone knows how hard it is to be a preemie mom unless you walk in our shoes. To watch your babies struggle so hard to survive makes you incredibly protective, especially when they are still so young. You should not feel bad at all for protecting you lo. I would have freaked if someone kissed by lo at that age. It is your job to protect them! I also think it is important to take some time for yourself because the stress and responsibility can really take its toll. I ended up with carpal tunnel the first couple months my lo was home because I NEVER put him down! I would see if a couple very trustworthy family members could come over so you can get out and treat yourself to a manicure or even just a peaceful walk! It will make you a much calmer, happier mommy and you can enjoy your time with your girls even more!
I felt exactly the way you are describing this weekend except we are still in the NICU. I'm sorry everyone is giving you such a hard time and putting pressure on you. You are doing an amazing job with your girls! I hope you get some time off, get your husband to watch them for a couple hours so you can relax.
Regarding your question, Cora failed the thyroid part of the NB Screen. The hospital ran a more complex set of tests and they all came up normal. The Neo team said that there are often false alarms for preemies. Keep us posted on what you learn!
Our precious girl, born at 27 weeks.
My son failed the newborn screening as well (specifically -- something about metabolizing amino acids). I of course did a lot of googling, and none of those disorders are good. But, as it turns out, it was common for preemies to get false positives on that piece b/c of the IV nutrition he was receiving. Second test came back normal.
My sister's daughter also got a false positive for cystic fibrosis and her daughter is fine.