11months and no answers.. yet — The Bump
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11months and no answers.. yet

****************Warning***Child Loss mentioned**************

I was hoping to find some answers here from moms who have been there or maybe get some ideas for what questions to ask doctors or tests to push for. I will try to shorten my extremely long story. After 5yrs of infertility we got pregnant with IVF. My Twin girls were born at 33wks and couldn't have been more opposite. Ill start with Baby B (my angel), she was my strong twin 4lb5oz, spent 30 days in NICU growing and gaining with no health issues. She did not qualify for Early Intervention and met every milestone ahead of time. At 16wks she passed, autopsy ruled SIDS, we did have extra testing done with nothing found.

Baby A (my survivor) started at 3lb12oz and was a fighter from day one with multiple health issues. While in the NICU she quit breathing and had to be resuscitated and they did tests including EKG, EEG, MRI, Spinal Tap, X-rays, Genetics (basic) and found nothing. She has Cranial Nerve Palsy VII due to her positioning in the womb, her facial muscles were affected like a stroke and she struggles with coordination of suck-swallow-breathe while eating which lead us to a visit to the Craniologist, she also qualified for a helmet but with her breathing issues and the weight of the helmet we are not pursuing that option at this time, instead we go to a Chiropractor where he works on the placement of her occipital bone and torticollis. She has been cleared by an Orthopedic for twin hip dysplasia. She has a congenital heart defect ASD aka "heart murmur" which we follow up with a Cardiologist. She has Laryngomalacia aka "floppy larynx" which contributes to her difficulty breathing and eating. After her sister passed I demanded a home apnea monitor and to this day still has severe apneas which we have had a sleep study for a Pulminologist to review. She sees an Otolaryngologist for 6 failed hearing tests and had tubes placed and then replaced this past winter and we finally got passing results. She does not track things with her eyes well and never makes eye contact so after visiting a pediatric Ophthalmologist we now have glasses. Her Pediatrician is a small town guy who just keeps giving us referrals when even he is at a loss. She struggles with reflux and constipation which we are maxed out on her med doses and our next step is a referral to a Gastroenterologist. We have been to a feeding clinic, an airway clinic, a developmental clinic, sleep study and no one is able to give us any solid answers as to what is wrong. We have been on a waiting list since November and finally have an appointment at the end of this month (April) for the Genetics Committee and im hoping they will be able to enlighten us. Our Neurology Appointment has been put on hold till after the genetics because they may want specific things/tests for the neurologist to look into.  Luckily in PA, Early Intervention is a free state program and we are making use of it to the fullest. We currently have 3 therapists and will be adding a 4th that come weekly to our house for an hour each. We have a Development Specialist, Physical Therapy, Speech and Language (Feeding) and will be adding Occupational Therapy. She is unable to sit, roll over, or hold herself up on her elbows, and reach to play with toys at 11 months. Her sounds (after just starting to hear in January) are still from the back of the throat and we have yet to hear any vowel sounds or m,d,p,b. She doesn't respond to her name or songs/pleasant sounds but she does jump if something startles her so we know she can hear. After her yearly NICU review last week they are placing her development below 1%. One of many health problems is more of a quirk that bothers us all, but no one can explain, she constantly wants to throw herself backwards when being held or arches her back when laying down, shes alert when she does it and laughs about it but the problem is no one can really safely hold her and she needs to be watched so closely so she doesn't throw herself out of a swing (its almost happened), when sitting she thrashes and could potentially hit her head if someone is not sitting behind her. Some of the theories are muscle spasms, seizures, equilibrium, reflux/constipation pain, back/hip pain, behavioral, we don't know and she could end up hurting herself if we are not constantly on guard. I just know there is something not right and she has been to OVER A DOZEN Doctors, Specialists, Therapists, etc and no one can give us any answers. I feel like over and over she is slipping through the cracks and each doctor only fixes one of her issues and when she has so many, no one is really looking at the bigger picture. Have any of you moms had similar situations, is there something else I should be looking into, Im trying to advocate for her but she seems like such a complex package each doctor just wants to pass her on to the next doctor.

**********SIGGY WARNING**********ALL WELCOME**********

 

Me:31   DH:32   TTC:5+ years  Twins:via IVF 5/21/2015  TwinlessTwin/Angel Baby:9/14/15  Fur Babies:2
Struggled with infertility, hubby was in the military. TTC since Jun08 (on and off due to deployments, training, and relocating). We did the "white dress" wedding Nov09. Hubby came home, medically retired USAF July, 4th 2010. OBGYN#1 Oct10-Dec12: All paps and exams normal, TTC naturally, tracked OV,CM,BBT. OBGYN#2 Jan13-Sept13:Second opinion, tested everything, Several rounds Clomid50mg, all BFN. Laparoscopy for Endometriosis, Cysts removed, Tubes untwisted, HSG clear, Scarring left ovary and tubes. Jan14-Aug14 Cycle of Lupron, Several more rounds of Clomid 50mg all BFN. Began IVFSept14-RE in CLE:) CD1(9/28). Stimming began 10/1 Microdose Lupron Protocol (150Follistim/AM,150Menopur/PM,20Lupron 2xDay). 7follies(right) 3follies(left). Trigger 10/10(10,000HCG). ER 10/12(5R,4M,4F). ET 10/15 Transferred two perfect Embies(8cell/9cell). Beta #1(14dp3d/4w) 362 BFP/Beta #2(21dp3dt/5w) 8,273/First Ultrasound(6w4d)11-12 confirmed twin pregnancy. Ultrasound Jan15 G/G di/di twins. PROM 33w4d emergency C/S. BabyA:3lb12oz,18in (45dayNICU), BabyB:4lb5oz,17in (30dayNICU). Lost BabyB to SIDS 9/14/15. BabyA is my whole world but struggles in the 1% delayed development, with many other health problems.

Re: 11months and no answers.. yet

  • Congratulations on your babies, and I'm sorry for your loss. I'm not a mom, but I work with many babies that sound similar to your little one. You may never get the answer you're looking for, and you may already have the answers to what caused your child's struggles: she had a very rough and complicated start to life, both in the womb and out. Many of the circumstances you mentioned (low birth weight, lack of oxygen /resuscitation, neurological abnormalities) are associated with the effects you describe. You're right that something isn't right with your daughter, but be confident you are doing everything you can for your daughter. You are strong, you are persistent, and you're getting her exactly the help she needs. Though you may not get an answer, you often don't need the right answer to find the right solution. For example, you may not know exactly why she arches her back, but you can provide the right interventions for her regardless (keep her safe, monitor for pain, provide appropriate alternatives for stimulation in case it's for self-stimulation, keep track of the circumstances of when she's more and less likely to do it, position her in ways she's less likely to do it, etc)

    Each specialist working on their area without looking at the big picture is extremely common, and as a parent you unfortunately become the one person who really connects the dots. It's hard, it's frustrating, and it's scary having to take on that role when you're the one with no training. Sometimes you get the right doctor /therapist /teacher who can think outside their box, but that's not easy or common. Have you connected with other parents near you who have medically/developmentally complex kids? If not, your NICU or developmental therapist should be able to point you in the right direction. Other parents "get it" in a way no one else does, and they provide great emotional and practical support. They may know a great pulmonologist/GI/SLP/etc who looks at the whole child. Also, your pediatrician sounds normal; they're trained to deal with common childhood ailments, not the specialized stuff. Look into getting a developmental pediatrician for your child, they are the ones who specialize in kids like yours. He/she can help put the puzzle pieces together so the burden isn't all on you.
    momofmanyinthemitten
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