We were taken to perinatal testing to see the cardiologist, Dr. Bott, at 3pm. The echo was done just like an abdominal ultrasound, they just used additional features. It took over an hour. Maya's heart looked perfectly normal and sounded just find. Bobby's heart looked structurally normal, which is great news. His heartbeat was still arythmic and the signs of SVT were still there. (In fact, the monitoring from last night and this morning both sucked because the arythmia was so present and the SVT was back). The monitoring was fairly quiet, but at the end, the doctor said that he thinks Bobby will be fine. That the SVT is not severe enough to put him into heart failure at this point. That he has seen babies have the arythmia that Bobby currently has go 10+ weeks with no issues. He cannot tell us why this is happening. There are no external signs as to why. He cant see any internal reasons as to why. So, at this point, they seem to think that it will continue throughout the next 10 weeks and will resolve upon birth. And if it doesnt, fixing a heart issue in a full term baby is much better than in a 26w one. But he was very optimistic.
Dr Bailey just came in and said that he spoke to Dr Bott, who wants to continue my current dosage of medications and have be ultrasounded every few days to check for hydrops (fluid on the heart/lungs). Dr B said that he is still hopeful that we are going home in 12 days but that he wont make that official until we see how Bobby progresses and watch his heart ultrasounds for the hydrops. The problem is that he doesnt want me to have to come to the hospital twice a week and put extra pressure on my cerclage by traveling and sitting. But he said that these are all things to discuss in 10 days or so. That he'd rather see what is going on and have some basis for how to proceed versus dealing in hypotheticals right now.
He also said that he is amazed that I've been here so long and havent complained once. As sad as I am to be here and not home... As much as I want to go home... I cant complain- my babies are still alive and inside of me. I know the alternative. I cant complain about that. I may break down to Peter and I may vent here, but ultimately, I'm just thankful for one more day.
I was talking to Sarah today and we were both commenting that we cant believe tomorrow is September 1st. September... Fall is soon going to be here... The babies are going to be here in a little over 2 months... Wow...
September 1st... 19 months since my first son was born...
September 1st... 41 days in the hospital.
I am tired. Emotionally and physically. My body hurts. My back, hips, and bum ache. My fingers are starting to bruise. My arms are black and blue. My heart is fearful. My mind is struggling to process everything and I just feel so tired. I am so very grateful- please dont get me wrong. Each day is such a blessing. As I lay here, feeling them engaging in a circus in my belly, I feel such joy that they are okay and playing together. I look in awe at my growing belly and the stretchmarks that go on forever. I am so thankful to have them inside and, it seems, safe. But I am so tired. I cant concentrate when people call me on the phone and I dont want to talk. Most folks dont get that. It isnt them; it is me. It is just too hard to focus. There are exceptions, like my mom and Sarah, but is because I dont have to focus. I can be a lump and they are okay with that if that is what I am at the time. My body is starting to feel the lack of movement and my muscles are starting to hurt as they become weaker and weaker. My mind tells me that, even though I am only 68 days from the full term, 36 weeks we are hoping to get and that seems so short, it feels so long. I am trying to keep my eyes on the prizes that I am lucky to carry... To stay positive... But now, adding in the concern of not going home to my bed... I want to cry. This was what I was holding out for and the fear that it wont happen... It is hard. We will do whatever is safe for the babies but this was a rainbow in the distance.
Dr B says to hold out and we will make a decision later on. To try not to worry. We will cross this bridge in 10 days. So, that is what I will hold out for. Not worrying. And Peter says that if the ultrasounding is all we need, perhaps we can go to a local hospital outpatient and have them send the reports over. We will see if that is an option. I will look into it.
Please continue your prayers for our little ones, especially that the arythmia calms itself down and disappears. This is a priority right now. Even if it doesnt disappears but calms down considerably.
All in all, we are relieved that Dr Bott basically confirmed Dr C's diagnosis and didnt find something worse. It seems that this low level SVT can continue for 10w and be okay for his heart, so that is what we are hoping.
I'm glad to hear Bobby's prognosis is good, acc. to the specialist. 68 days isn't much longer than you've already been in the hospital. You have to know you are incredibly strong. You can do this.
Sorry to hear that the SVT is back. I am hoping and praying for you and that in 10 weeks time this will all be just a memory. Hang in there...you are doing such a great job! ((HUGs))
I know it must be hard, but you are doing an awesome job baking those two. I am continually praying for your two and that the arythmia calms down or completly disappears altogether. Just keep your eye on the prize. Soon you will look back and say that it was all truly worth it!
actually there are home nursing companys that come to you, (even) with a portable ultrasound. so they can come out 3 times a weekish, or whenever you have concerns & physically check in when needed. look into local companys.
very glad that bobby is looking ok for now
i know it must be very painful, boring, and frustrating to be in the hospital for so long. you are doing so well and i know i trust that wonderful dr of yours to make the right decision, whichever it will be, for both you and the babies.
i've lost 2 babies. 1 m/c, 1 stillborn due to trauma (my ex tried to kill me by throwing me down the steps. i just wanted to thank you for being so brave to document your journey. we are only going to try again, because we know it is possible to have our happily ever after. your in my prayers.
Thinking of you Michele... hang in there, not too long to go xx
"...[H]e thinks bobby will be fine." What beautiful words those must be to hear after everything you've endured.
I can only imagine that this is incredibly frustrating, this "hurry up and wait" mode that you have to keep doing. Yes, you know that you're blessed to have them with you still, and each day is a blessing - but that doesn't make it less hard. That doesn't mean you've gone through less with your other three angels. You're so strong - you've persevered through so much, but it's okay to be weary every once in a while.
God bless you all.
You are being so brave, so strong, through all this. And you're allowed to just want to be home. Having said that, I'm so very glad you're all doing so well. You are all in my thoughts every day, but especially these days when the waiting-and-seeing seems so very hard.
I'm glad to hear the doctor thinks Bobby will be okay.
*hugs* your feelings about bed rest are heart wrenching. Its a mix of emotions. Ofcourse you're grateful for each day, but at the end of the day, you are a human being and this is a difficult thing to deal with. It's okay to complain and feel tired of the constant monitoring, and prodding, and poking, and having to rethink even the simplest of acts such as walking from one end of a room to another. There is so much on your plate, don't let guilt over your frustration be one of the emotions you are dealing with.
And you are in my prayers Michele, each and every night.
So glad that Dr. B sees good things for Bobby.
Wow, 40 is a lot of days! You are doing such an amazing job. Don't underestimate the cumulative effect of everything -- it's really not you, it's the situation. My medication totally knocks me out for many hours a day, and being horizontal all the time is not what the body is designed to do.
Is there anything available at the hospital that could make it easier for you? They put egg crate foam over my bed because it was hard on my hips to be sideways all the time (these beds are really made for people to be on their backs). One of the perinatologists always puts in a consult for an osteopathic manipulation, so they're seeing me at least twice a week. I arranged for a massage tomorrow (I am paying for it since insurance doesn't cover it). PT is also a possibility, esp. if I'm here longer. I didn't even know about most of these things until I started digging, so take advantage of anything you can! Even a fully mobile woman at this stage of twin pregnancy is having a hard time physically, so after 40 days on bedrest your body is really paying the price. I know that you, like I, will do anything for your babies, but hopefully there are things that can make it better (for you and therefore for them),
It's really great that the peri didn't find anything new. Just having things stay the same is a pretty great outcome for now and there's so much hope for Bobby and Maya to stay inside as long as they need to! I'm sorry you're having to go through the months of bedrest. It must be so rough on your poor body- even knowing it is for a good reason- it is still difficult I'm sure and now that it is getting more uncomfortable, well, I'm wishing for you to feel well and for the kids to keep on kicking and rolling for a while longer until it is time to come out & play!
try to find in home care if they send you home, some insurence will even pay for it. my mom is an in home cna and she works with in home nurses...im sure you could find a nurse or nurse practionioner that would be able to do that stuff in home? not sure about a doctor although i have heard of a few
glad to hear bobby is having a good diagnoses
Just reading and getting caught up. I truly admire you and your courage. Keep hanging in there! I'm still here cheering you on ;)
Are you getting any in bed physical therapy? It must be so hard on your joints to be in bed all of the time!!! Are you allowed a heating pad for your back? Or ice?
I am glad the pedi cardiologist said that Bobby's arrythmia is not associated with any heart defects.
That must be such a huge relief!
You have been so strong through this, you have every right to feel tired. I am continuing to pray for those sweet babies of yours!
I'm so glad they didn't find anything wrong with Bobby's heart! I am also pregnant with boy-girl twins, with the exact same due date as you. Best wishes for continued good news.
So glad the news was good. 10 weeks, that's nothing right? Argh. YOu are being such a trooper, I can't imagine how hard this must be for you, I hope, no matter where they keep you that the time flies by quickly and that those beautiful babes stay put for as long as they need to in order to come out healthy and strong. Just like their mom.
Great Cardio news!!
Bedrest is HARD. Being in the hospital is EXHAUSTING. Fearing for your children's lives is terrifying. You're doing a superb job at keeping it together, setting small, doable goals, and just getting through the days. Eventually this will all be a distant memory and your kids witch be whacking each other with their toys. You can do this!!
You're doing great. Even when you don't feell like you are. It's a hard road now and I am sorry that it has to be like that but keep doing it day at a time.
Go M. GO P. Go B and M
You'll be together as a family in a different way soon.
I'm so glad that Bobby's prognosis is good. I hope that the SVT calms down even further.
And no wonder you are tired. Anyone would be tired. The strain of being in the hospital and the strain of all those days and memories.
I hope that the doctors will decide to let you go home to your own bed. Praying for you and thiinking of you. You are such an inspiration, I know that if I am ever lucky enough to fall pregnany again I will be going back to these posts, to read them again. xo
Wonderful news - His heart is structuraly normal.
I'll keep hoping you get to go home soon and that these babies will stay safe with you!
It must be such a comfort when your physicians can confirm a diagnosis. It feels like it can start to give you some real hope. I am praying for you and your little ones and as hard as everything seems right now...each day is a blessing and with some patience and God's love they will be physically with you. *hugs*
I'm sorry to hear about the worries over Bobby's heart, but it sounds like it's going to be just fine. You may be tired, but you are doing GREAT!!! Just keep taking it one day, and one hour if you need to, at a time, and you'll be there before you know it.
Just wanted to let you know that I continue to pray for your little ones.
I'm glad the echo went well, and I hope that Bobby's heart arrythmia will turn out to be nothing. That would be so wonderful.
Thinking of you.
You should visit www.mycharmingkids.net - Stellan is a "heart baby" with SVT in utero and is doing GREAT despite being told he wouldn't survive. His mother is a great source of inspiration and will answer you if you have any SVT questions or need a Mom's perspective. Hang in there!!
I’m so glad to hear that the Dr. thinks Bobby will be OK. I’m in such awe of your strength and courage and the love you have for your babies. You are an amazing mama. You guys are in my prayers every day.
Bobby will remain firmly in my prayers. As will you--once again, I'm filled with admiration at your strength and positivity.
I've been reading your story for a couple of weeks, and I wanted to say that you are incredibly strong. I was only hospitalized for 10 days with our daughter and it seemed like an eternity.
I'm glad to hear that the doctor feels the SVT will resolve.
All the best for 68 more days of pregnancy!
I have been reading your story for a while now and am truly in awe as to how well you are handling all of this. You and your husband have incredible strength and are inspirations to us all.
I have been waiting to hear what the cardiologist would say with the echo test. I'm so glad everything looks OK and that he feels the SVT will fix itself. You are in my thoughts (VERY positive vibes)and I wish you all the best over the next ten weeks and beyond.
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