Any moms of babies with chronic conditions?

[sequins]

PDQ

Baby sequins has hypertension, you guys. We're starting her on medicine today. The doc wants to keep her on it for a year or so and re-evaluate. Apparently many kids grow out of it but some kids don't, so we'll just have to get on with life and deal with it as we go. I'm so upset and heartbroken. The surgery was supposed to be it. I wasn't expecting to deal with a chronic condition like hypertension. Any other moms dealing with similar stuff? Hugs and advice welcome.

And because it's been forever and I would really love to hear how adorable my baby is, here's a picture.

[pierogigirl]

I hope she grows out of it by your next check up. There is a special needs check in on MMM.

[franklin]

No experience here. I'm sorry you're dealing with that, it must be stressful. But she's super adorable, those colors look amazing on her!

[Elsa]

I'm sorry sequins

She is seriously gorgeous. So so beautiful!

[textbookcase]

I have no advice, but just wanted to say she's so gorgeous. I love seeing her pics on ig. I'm sorry you're dealing with health issues with her and hope the meds are able to manage it well.

[sapphireblue]

I am so sorry! You already had that surgery, it seems unfair to also have this now.

She is so adorable! What a cute little girl.

[lilac05]

She is absolutely beautiful!

Big hugs for you, sequins . You are not alone in this, and I hope you find some support from other moms in the same boat. I'm glad the doctors are staying on top of it & that time helps her!

[TrudyCampbell]

She is so beautiful! I hope it's easily managed and that she outgrows it.

My daughter has a rare genetic disorder that has caused developmental delays and a heart condition (which she has thankfully outgrown). It's really tough hearing there's something going on with your child. Hugs!

[illgetthere]

S1 has Wolff Parkinson white syndrome and s2 has chronic breathing issues and asthma. It sucks when symptoms are presenting, but we are very lucky in that we can go day to day with minimal intrusion. I'm sorry you are having to deal with this and hope she grows out of it soon. S2 has been on an inhaler since he was 2, and the Dr has said he might be able to drop it now two years later.

[orangeblossom]

No kids, but I just wanted to say, a) she's adorable b) I hope she responds to the medication and grows out of it and c) hugs to you.

[underwaterrhymes]

She is so cute, sequins.

K has asthma and N has laryngomalacia. N should outgrow his for sure and we are hoping K will, too. (He's been so much better now that he's on maintenance inhaled steroids.)

Just take it day by day. Big hugs.

[Monica Geller]

(( hugs)) she's adorable! I hope that by your next appointment it's corrected itself and she doesn't need meds anymore.

[dd1204]

She's beautiful. I hope she outgrows it.

[blondemoment123]

Just came in to see the adorable baby. ((Hugs))

[cville]

SHE'S ADORABLE

[VeryViolet]

I am so sorry you are dealing with this. It is such a helpless feeling dealing with your kids having a problem. I hope she outgrows it and this is just a small hiccup for her and for you.

Also, she is so so so adorable. She just looks like she should be snuggled all the time!

[mslhb]

My DD has epilepsy. Started having seizures at 2 weeks old and has been on medication since 4 months old. She is now almost 8. Medicine, EEGs, MRIs have always been a part of our existence. Big hugs to you. Can be very scary and difficult knowing your child has something that they could very well struggle with for the rest of their lives. Just take it one day at a time and know that ultimately you are the best advocate for your child.

[thatgirl2478]

Hannah has only one kidney. We monitor it's growth, but for the most part it's just there. The bigger concern will be when she gets bigger and wants to be in activities. She can't do all of them, check even falling off a bike could be a major problem. We just plan to take it one day at a time.

I hope your daughter grows out of it.

[jssymom14]

No advice but what a cutie!!

[Deleted]

What a sweet baby! I hope she grows out of it.

DD has yet to be diagnosed with anything chronic, but she is 13.5 weeks and has had 2 UTIs already. She sees a urologist next month to try to pinpoint the issue. But we have been told not to be surprised if she gets another before her appointment. It sounds like something we will be dealing with for a while.

[fivechickens]

Your daughter is adorable!

My daughter had pulmonary hypertension and chronic lung diease due to being a preemie. We did not get a hypertension diagnoses until she got very very sick. The chronic lung diease was known right away because she was so tiny when born and need a lot of assistance to breathe. She was followed by a cardiologist for 2 years and a pulmonologist for 3 years. She did grow out of the hypertension and is no long followed by the pulmonologist but it keeps you on edge, even now being healthy for 2+ years.

My other daughter has cerebral palsy. She/we are lucky in that it is mild but it was a hard pill to swallow when she was diagnoised even though we knew she had it.

Hugs. It's hard being a parent and seeing your child struggle. Kids are amazing creatures though and can deal like champs with whatever challenges they are dealt.

[CajunShrimp]

Oh my goodness, she is adorable! I hope the meds clear things up quickly.

DS1 has moderately low muscle tone. He goes to OT for it every week and is making good progress.

DS2 has unilateral club foot. If you looked at it now, you could never tell. He had to have a full leg cast for the first 7 weeks, then surgery where they clipped his Achilles Tendon (which he handled like a champ - one dose of Tylenol post op and he was good to go), another 4 weeks of casting, then 6 weeks of 23 hours a day wearing a brace and boots. Now he just needs to wear the brace and boots for 12 hours at night, and will have to do that for another 3 years.

He also has something funky going on with his kidney - mild hydronephrosis. We follow up with that in two weeks. They are hoping it has resolved in the last year.

It is so hard when your kids have health issues that don't go away. Big hugs to you.

[ginandjucie24]

She is so sweet. .

My twin sister was born with a hole in one of her heart valves, she has had two surgeries in her life to replace the valve. She is doing good, she has lived a normal life, she works and has two healthy boys. Point is, your baby is going to be fine.

[sequins]

Thank you, everyone. Giant, big, huge hugs to every single mama who's dealing with their children's health issues.

[Eagles]

Look at that beautiful girl!

[demofea01]

Hugs to you! I hope she grows out of it.

DS has nystagmus. It will probably calm down a bit as he gets older but it'll never go away. I worry about his vision and his acuity. He may not be able to drive. We'll always have appointments with his ophthalmologist to track it and make sure he isn't losing his eyesight. It's scary and it's hard. I would definitely suggest looking for a group online or locally of moms with babies/kids with hypertension.

[katiescarlett]

DS1 has asthma and lots of food allergies. It sucks and as he gets older it's becoming less likely he will outgrow them. I hope your gorgeous little lady outgrows her hypertension! Many hugs.

[jlt19]

I'm so sorry. Any type of medical issue with our kids is like a kick in the heart. I hope in some time you're able to find some peace with this. Major hugs for you and your beautiful girl.

[coribelle26]

She's so beautiful, sequins.

DS has pulmonary valve stenosis and a small hole in his heart. He is also too young for an official asthma diagnosis but our doctors have basically said, yeah he has asthma.

It's gotten easier to manage (mentally) over time. We found out about the heart defects when he was just a week or two old, so we've had a lot of time to deal with it. The asthma has been a long, gradual realization as he's had SO many viruses that have affected his lungs this year. There have been ups and downs and I'd be lying if I said I wasn't kind of a mess before every cardiologist appointment because I don't know what to expect, and at what point they're going to tell us he needs surgery (if ever, we still don't know if it will ever be necessary). I also get sad about how much time he spends doing breathing treatments, and how he's this tiny little guy but he's just gotten used to spending 30 minutes a day with a mask over his face. So yeah, it definitely sucks feeling like you just wish your baby was spared from these uncertainties.

It helps, though, to think about how he was born to a family with the resources and the ability to help him deal with these issues - which ARE manageable in the grand scheme of things. And the older he gets the more I see how capable and strong he really is, and it's much easier to believe that he's going to be okay - and so will baby sequins!

[illgetthere]

coribelle26. How old is he? That sounds a lot like our first year; constant breathing treatments and hospital stays. We were able to get a diagnosis at 2 because of his history, and starting the maintenance meds made a world of difference.