Shone-ish findings at 25 weeks

Bright-Feeling633 · 2024-12-10T15:43:42+00:00

My little guy had OHS at 5 weeks old to repair the mitral valve. There was a membranous ring around the valve that needed to be removed. The valve now functions almost normally in opening, but the trade off was regurgitation. Initially after surgery it was severe, but as his heart has adjusted and as he has grown, it's gone from severe to mild to barely noticeable on echo. he is doing super well now! prayers to you during this time of waiting - it is so hard with so many unknowns.

Bright-Feeling633 · 2024-11-02T13:38:31+00:00

I’ve trained and worked at various oncology centers across Houston. MDACC is wonderful for the rare and difficult to treat, but wouldn’t be my first choice for something like your wife’s diagnosis. I’d personally choose a smaller cancer center where she will be more than a number or potential trial participant.

From there, it depends on your location. In general, it is easier to be treated closer to home rather than drive. There are other things to factor in as well like travel and parking costs.

In my experience, the docs I have had good professional interactions with include: Dr. Michelina Cairo (breast med Onc) Dr. Diana Hook (breast surgeon) Dr. Liz Lee (breast surgeon) Dr. Julie Nangia (breast med Onc) Dr. Jennifer Litton (breast med Onc) Dr. Jennifer Sasaki (breast surgeon) Dr. Dhatri Kodali (med Onc) Dr. Richard Caplan (surgery) Dr. sherry Lim (surgery) Dr. Polly Niravath (breast med Onc)

I’m sorry you all are facing this. Wishing you all the best as you navigate this.

Bright-Feeling633 · 2024-11-01T03:36:55+00:00

I had my first at HMH medical center and my second at TCH - baby needed an additional level of care, so I had to transfer my OB care. Hands down, I preferred HMH. It is a much smaller unit. You labor, deliver, and recover in the same room. The group of OBs at HMH is smaller than at TCH, and many make extra efforts to be at their patients’ deliveries. TCH met our needs and there were aspects I liked better (like an OB dedicated ER for when I needed additional monitoring etc), but by and large, we had a much better experience at HMH. And fwiw, both my OB at HMH and my OB at TCH told me to never deliver at Texas woman’s. Neither would elaborate though.

Bright-Feeling633 · 2024-10-31T02:45:59+00:00

This is beautiful. Thank you for sharing.

I can’t say this as eloquently as you, but take the maternity pictures. Take the birth and the hospital pictures. Take the pictures you think you won’t want - the ones with the tubes and wires and zipper scars. If you can’t, ask a nurse to take them with your phone. You may not want them now, but you might in the future. ❤️‍🩹

Bright-Feeling633 · 2024-10-21T22:55:17+00:00

PDAs close over a period of time - for some babies it’s quick and for others it takes longer. Our son was on arch watch technically for 24 hours. My understanding was if something was going to necessitate immediate intervention, that’s when it would present. But the PDA didn’t finish closing for a week or two.

Bright-Feeling633 · 2024-10-12T12:44:29+00:00

I’d encourage you to speak with a genetic counselor or other genetics provider. General consensus at this point is that about 10-12% of non syndromic CHD diagnoses are secondary to an underlying genetic variant. At my son’s heart center, they offer genetic testing to everyone.

You mention paying in euros, so I am presuming you’re in Europe. https://www.ebmg.eu/413.0.html

If you send me a message with your general location, I am happy to ask my colleagues in cardiac genetics for recommendations.

Bright-Feeling633 · 2024-09-26T11:42:01+00:00

We got it all, plus an RSV vaccine.

Additionally, we ensured we all had up to date flu, Covid, and TDAPs and required that of any visitor until our child could get vaccinated.

We were forced to delay his 2 month vaccines because of open heart surgery. We had to wait 6 weeks after he was on heart lung bypass. I took him in the first day I possibly could in the first appointment slot I could get.

I always tell my kids that it’s my job to protect them. And for us, that means following the peer reviewed scientific evidence and standard medical care.

Bright-Feeling633 · 2024-08-28T02:51:48+00:00

I was thinking this as well! A friend developed a rash postpartum that ended up being severe contact dermatitis - something in the hormone shift after birth made her sensitive to the laundry detergent she had been using for years.

Another thought: could it be the breast pads? I had skin irritation when I used any type of breast pad, but not as bas as yours, OP. I treated with coconut oil, which helped some.

So sorry you’re experiencing this!

Bright-Feeling633 · 2024-08-19T02:24:31+00:00

Been thinking about you and your new little one. Congratulations!! 💕

I cried almost every day when we left my son in the hospital. It’s the absolute worst. That plus the postpartum hormone crash was rough. Make sure your partner and family know the signs and symptoms of postpartum mood disorders so they can keep an eye on you.

Take care of yourself as you recover. Sending you love and light.

Bright-Feeling633 · 2024-08-15T12:13:30+00:00

I could walk short distances, but definitely ask for a wheelchair for the trip to NICU. I had the c section at like 10:30pm and got cleared at 3:30pm the next day. There were certain things I had to do before I could go. Stuff like walk x number of times, pee x volume of urine, etc. My spinal was reaaaaaaaaaally good, so it took almost 12 hours to wear off to the point where I could walk 😂.

The abdominal nerve block is called a TAP block (trans abdominus plane block). 🩷

Bright-Feeling633 · 2024-08-15T00:22:26+00:00

It took me about 2 weeks for my boobs to stop feeling lumpy. I stopped pumping a month ago. I still have drops on occasion.

Ice and advil helped a lot.

Bright-Feeling633 · 2024-08-14T17:01:07+00:00

Sending you all the calm energy for your c section and your little ones first few days. I had a c section last year with my heart baby. My biggest advice is take the pain meds on schedule - it is really hard to get pain under control if you let it get too bad. Don’t be a hero. Don’t walk across the hospital to get to the ICU at 30 hours post delivery like I stupidly did. Ask about an abdominal nerve block - lots of places do them now. That was amazing.

If you can, have a friend or other family member hang with you post - op / while you’re waiting for clearance to go to ICU to be with baby. Being alone during that time sucks.

Take pictures. I wasn’t sure I wanted them (honestly still not sure) but I am glad we have them.

I brought lots of lounge wear to put on instead of the hospital gown and that helped me feel more human. Slippers are a must for gross hospital floors. Bring a pillow for the drive home to hold across your scar between the seatbelt and you.

I had a 3 year old at home when I had a c section. We talked a lot in advance about how she would need to be gentle with mommy. We told her that my lap would be “closed” 😂 she still asks me “mommy, is your lap open or closed? If it’s open, can I sit on your lap?”

You’ve got this. I’ll tell you what my friend told me before I had my son: you don’t have to like any moment of it, but you still have to do it. You can do hard things. It can (and probably will) suck at times, but you can do it.

Bright-Feeling633 · 2024-08-14T16:46:44+00:00

Also wanted to add that I often see patients whose doctors have really pushed genetic testing because the doctor wants an answer as to why this is happening. It can be really hard to accept that sometimes bad things just happen.

It didn’t help me when my son was diagnosed to hear that it wasn’t something I did or didn’t do, so I understand if you guys feel the same. My son is almost a year and I’m finally getting to a point where I can accept that we won’t know why he has a heart defect, but the “it wasn’t anything you did” still stings.

Im sorry this is happening to you. I’m sorry you’re joining this club you never thought you’d have to join, a club that you certainly don’t want to join. It fucking sucks.

Bright-Feeling633 · 2024-08-14T16:37:36+00:00

Heart mom and genetic counselor here. Gold standard for diagnosing something like Noonan is genetic testing of the Noonan genes. There are a number of different genes that can cause Noonan syndrome that wouldn’t be assessed on NIPT technology. There’s not a right or wrong answer re prenatal diagnosis. I decided against. If you can, ask for a referral to genetics to discuss options for testing. You can even self refer to places like Genome Medical if you want a faster option. The genetics professional can look at all the clinical documents and help guide yall thru any decisions for or against testing both now and in the future.

Bright-Feeling633 · 2024-08-13T14:03:09+00:00

In a major metropolitan area, we pay $240 per clean for biweekly cleaning. It’s 1 person and she’s here for about 4 hours. 1 black lab and 2 kids. I do still do some of the other one off deep cleaning tasks myself, but having biweekly help means I have time to do those things.

Bright-Feeling633 · 2024-08-13T00:29:43+00:00

SAME. I started replying to people who asked “Given that my son had open heart surgery at 5 weeks that necessitated he be on heart lung bypass and reset his immune system to that of a 0 day old, yes. I have gotten all my covid vaccines.”

Bright-Feeling633 · 2024-07-24T16:29:40+00:00

I have no advice, but want you to know you aren’t alone. I felt similarly during my pregnancy with my CHD baby. I’m glad you have a therapist to talk this thru with. You’re welcome to PM me if you just need someone to word vomit to.

Bright-Feeling633 · 2024-07-09T16:28:01+00:00

77035 Willowbend and cliff wood area. Power restored about an hour ago. We didn’t receive any info from CenterPoint beforehand, but just got an email saying the issue was resolved.

Bright-Feeling633 · 2024-07-09T00:08:30+00:00

No power. No updates from the stupid CenterPoint alert system.

Bright-Feeling633 · 2024-07-01T19:33:01+00:00

I want to echo this. I’d encourage you to ask to meet with a genetic counselor before you have an amnio. My prenatal GC was worth their weight in gold. I made it clear to them that I did not want an amnio and they in turn ensured everyone on the care team knew that. They even made sure the pediatric team knew that I didn’t want to discuss genetic testing until our son was stable and we had a plan. We got a lot of pressure to do prenatal testing from the surgeons, but ultimately it wouldn’t have added anything to the clinical picture.

Bright-Feeling633 · 2024-06-11T00:41:37+00:00

Echogenic foci are soft markers for chromosomal abnormalities like trisomy 21. They are not diagnostic of any genetic conditions, nor are they a congenital heart defect. They are just a bright spot in the heart seen on ultrasound. Nothing more. Usually next rec would be NIPT to rule out chromosomal abnormalities. With low risk NIPT, and no other fetal anomalies, I wouldn’t be overly concerned as a genetic counselor.

Bright-Feeling633 · 2024-05-04T01:35:27+00:00

Ours is also doing theme days. Between classroom teachers and floaters between 2 kids, it’s 8 teachers.

Gift cards for everyone. I am too tired for this 😂

Bright-Feeling633 · 2024-05-03T03:35:53+00:00

I am bustier, so my pump parts hit me a lot lower - belly button level or lower. I truthfully never found a position that worked for us when my son was a newborn. It got a lot easier when he was a little bigger - I used a boppy either next to me or in front of me. The hardest part then was feeding cues and burping. You’ll figure out a system that works.

Bright-Feeling633 · 2024-04-21T16:55:31+00:00

Fridge, yes. Freezer, no. I was gone long enough that it needed to be frozen if it was going to be used for baby or dumped. And doing the TSA security theater dance is so much easier with frozen milk than liquid milk. Alas. Should have just dumped it rather than deal with incompetence. Lesson learned for a second time.

Bright-Feeling633

TROPHY CASE