Bad Dream

[JoeyG]

Hey there,
I'm not sure how to pose this question, but I cannot get it off of my mind. Now that our baby's arrival is now less than 3 months away, my fears of her upcoming surgeries are getting worse. I had a dream the other night that I can't shake - I dreamed that we delivered this beautiful, perfect, pink baby girl, and all of sudden, she just started turning blue. At that moment, they ripped her out of my arms and whisked her away and wouldn't let me see her. I woke up sobbing.

My husband told me the dream is probably close to reality. Is that what we can expect? I'm also having a hard time understanding how these delicate little beings can survive such a traumatic surgery. I don't know how my stepdad survived OHS at 60, and I saw what a toll it took on him -- how is a week old baby going to do it?

I don't know if there really are any answers to all this. I partly needed to get it off my chest, and I hope that I'm not the only one who's felt like this. I am trying so hard to stay hopeful and positive, but the dreams and fears sometimes get the best of me.

Thank you for letting me throw this out there!

[tbulkley]

I'm sorry you had such a bad dream! I wish I could tell you it's better than that, but for me it really wasn't. We didn't know about Maddox's heart condition (Hypoplastic Left) until he was about 24 hours old. However, he was instantly taken to the NICU to be monitored for meconium inhalation. I didn't get to see him for several hours, and didn't get to hold him until he was about 5 days old. I hope that with the pre-natal diagnosis, they'll be very prepared for the birth and it won't be so traumatic. I guess the thing that would bring me the most comfort, if I were in your shoes, is knowing as much as possible about the diagnosis and surgery's and also to realize that at Primary Children's your baby will get the very best care possible. Those nurses and dr.'s are angels in my eyes, and if this had to happen, I'm glad we got to be at PCMC.

[Alli and Kyle Hicken]

Wow Joey...those dreams sound pretty frightening. The anxiety in all of this really can be overwhelming. I think that your dream is much harsher than what the actual reality is. Discuss the plan in advance with your doctor, but we found it VERY helpful to go and take a tour of Labor and Delivery at the U hospital and see the rooms where you will likely deliver. That way, you can see the large windows that look directly into the NICU (don't worry...they have closed blinds during the delivery!!). When Grant was born, they were so respectful and it really was a celebration, even though everyone was hurrying to get him stabilized. Before my final pushes, one of the nurses had my camera and she captured photos for us. He was cleaned up on my chest and we got a few minutes to oooh and aah. My husband was able to cut his cord and then he was the one who got to carry our son to the window and pass him through. In reality we did not have much immediate time, but everyone was cheering and excited and it was wonderful. My husband watched our son through the window while the NICU team placed IV's and other lines to deliver stabilizing medication and when he could, he got to go over and spend time with our son in the NICU. Once I could get out of bed, he wheeled me over and we spent some time holding his hand through the incubator. One of the NICU nurses even took photos for us and printed them into a "happy birthday" sign so that when I was in my recovery room without him, I had a great picture of him tube free to admire.

I would also ask at your next cardiology visit to arrange a meeting with one of the hospital social workers. She will take you on a visit to the PICU and you will be able to see a baby who has just had heart surgery. This was hard to see at first, but we got to learn a lot before it was our turn and that made me feel really prepared and a lot less fearful. You will be astounded at how quickly babies can bounce back from surgeries. You need to expect recovery time, but their bodies are miracles and they recover so much faster than adults. Their bodies regenerate cells at such a rapid pace. Our son went through 4 surgeries in the space of one week and within a few days, he was making miraculous gains. Hold onto hope and just get a very real picture of what will happen...that way your dreams can't hold power over you when you know what to expect! Please feel free to browse our blog archives. Grant was born in march 2009, so the posts before that will show some of my emotions before he arrived and you will be able to see what to expect. Now at 8 months old, he is home, growing, thriving, and making us laugh every day!

Alli Hicken
mom to Grant

grantmeaheart.blogspot.com

[HANGZ]

Oh Joey...I am so sorry. I remember being filled with more fear each day Noah's delivery came closer. These little heart babies thrive in their Mommy's tummy...so the best you can, try to enjoy each kick, hiccup and movement your baby girl is giving you, and know that as long as she is in there, all is well.

Like Allie said, take a tour of the hospital, get familiar to the surroundings you will have after she is born. Noah was born pink, and he lost color over time, but he never went blue, just dusky. I do not believe that what us heart parents go through is anything less than a nightmare. No one can imagine having to do it. The waiting, the wondering, the worrying....however....right now you have nothing to do but dwell on the what 'if's'. When she is born, it will all be about 'what is next'. She could not possibly be in better care than PCMC. They will do everything possible to get her back in your loving arms. I can still remember the wait before Noah was born, and in some ways, it was so much worse than when he was finally here.

You are surrounded by so many people who have gone through this...so hold onto that. Hold onto the fact that we didn't like any of it, but we survived it and we are here to give comfort and advice to you. I am sending so much love your way, and call me or e-mail me if you need anything. I think you have the info., but if not...they are- beepersneeper@yahoo.com and
801-699-1190.

Heather Griffith
Mom to Noah (Tricuspid Atresia, ASD, VSD)

[Dummers]

Our little baby was born with a similar heart defect (minus PA). We had her at home for 2 weeks before they found the defect. The cardiologists even sent her home with us for 2 days before having us report back for surgery. I agree with the others who commented about touring the PICU. That was so helpful in preparing for what was to come. Ellie's been through 2 surgeries now. As I watch her play, I can hardly believe all that she has overcome and how much better our family is for having a heart baby. She is happy and active--you can barely even see her scar. Hope for the best! We'll be hoping too.

Good Luck!
Shannon
Mom to Noelle or "Ellie" as we like to call her
blog: www.dummanddummer.blogspot.com

[JoeyG]

Once again, I can't thank you guys enough. You really have made me feel much better ...as hard as that is to do these days!

We had our 1st appt with Dr Byrne on Thurs. During our next appt, she's doing just as you all suggested -- a tour of the labor and delivery room, so we can see the "big window." Meeting with her has also helped to ease my fears; she's a lot more optimistic than our other OB (but to give him a little credit, he doesn't deal with these complications.). And yes, she told be that my dream isn't quite what will happen -- she won't turn the dismal blue of my dream, thank goodness -- but that I probably won't get to hold her, at least, not like we were able to with Cate.

As well, we'll be getting a tour of the PICU during our next Echo. Again, I bet you're right ...it will be helpful to see all of that, though I admit I'm most scared of this part (--kinda bringing this whole ordeal to reality).

You all have such amazing strength; thank you for letting me borrow some! It is so helpful to have you all out there, who understand exactly what we are going through. We are truly thankful for each and every one of you. You are all absolute angels!

[tbulkley]

We will be in the PICU starting this coming Tuesday. I hope our stay isn't long, but look for us if you go in the next week or so. Even though our first tour was when we were actually going down to see our baby, it did help to ease the shock to see other babies after surgery before our own.

[JoeyG]

Hey Traci,

Our Echo is scheduled for 12/16 at 8:30am. I truly hope we'll miss you there, meaning your little sweetie is already home by then. May I ask, what's coming up next for you all? If you don't want to post, no worries.

We'll say some prayers, hoping for a speedy PICU visit for you all. Though I would love to meet you, I do hope you all are home by the time of our appt.

Until then, stay tough and keep us posted!

Oh, and PS-My husband and I couldn't agree more with all of you regarding PCMC; I'm so glad we're near this facility. We have Dr friends spread across the country who've told us that aside from Johns Hopkins, we couldn't do better than Primarys. I'm glad we all have that going for us!

[tbulkley]

Maddox is going for his Glenn surgery, the 2nd in a 3 surgery process. I hear this is physically the easiest of the 3. (He is Hypoplastic Left.) Dr. Pinto told us to plan on being there for 2 weeks, but I am of course hoping for less.

[Heart Mommy]

No matter where you are in the process of having a heart baby sometimes I think our little bodies and hearts can't handle some of the stress we put on it... But, that is what mommies and daddies do... We worry about our perfect little people and wonder why we can't fix the problem, cause isn't that what mommies and daddies do? I had a couple doozy dreams before Gator was born and I am not sure but I think it was my brains way of coping... To see in my nightmares the most terrible things... Now that we have fought past so many things I look back at those dreams and I am pleasently surprised that things didn't go that way. WHew! The fear of me being out of control was the hardest thing. I remember right before the Glenn, I dreamed that my older girl got sooooo upset that she found matches and lit our house on fire... It didn't happen...

We are doing very good right now. We are in waiting for the Fontan, the Last stage surgery for HLHS... We go to Card on the 14th so we will just miss you.. For me; the dreams have started again. I will breathe a whole lot better after our appointment, regardless of how it goes... The anticipation is KILLING me....

Just a fun thing. I did preggers pictures with my heart baby because regardless of if he was in me or not, I still wanted as many pictures as possible.

Another thing... I did a time line to help me remember all those important dates way way back when we were prediagnosed...

Good luck.

Brynn Homer
IHH Sec
Momma to Ryleigh (HH) And Alex (HLHS)- we call him Gator.

[JoeyG]

Ya know, I never thought of the dreams as a coping mechanism! There's only so many ways for this stress to vent ...and I bet my brain is choosing dreams at this time. Thank you so much for the revelation! And, it's beyond comforting to hear your bad ones never came to fruition. (Oddly enough, I also had a house burning dream after the "blue" baby dream!)

I'm glad to hear Gator is doing well! I hope and pray your Card appt goes smoothly. I can't wait for the day that we'll be done with our last OHS (a Fontan as well).

Take care and keep me updated on your appt -- sorry I'll miss you!!

[missvampyr]

Hi Joey,

Wow that must have been some scarry dream for you to have had. I have to tell you that babies today facing OHS are much luckier than those who faced it when I was a baby. My parents didn't find out until I was 6 months old that they had a heart baby. At 5 yrs old in 1968 I had my first cath. and the drs. offered to do surgery back then but the odds were way against me the drs. had no idea really what they were gonna do to correct my heart. In 1974 I had my 2nd cath. and a few months later had OHS. Back then I was basically a human guinea pig, the surgeon knew what he had to do to fix the heart but had never done it before. I was 11 yrs old when I had my surgery and I was one of three kids in the hospital that week to have OHS. Kids are actually quite resilent and do bounce back quickly so your little girl will be fine and because she is only gonna be a newborn when she has her surgery she will not have any memory of it. With todays modern medicine and knowledge that the drs. have today your little girl is gonna be in good hands. Todays drs. are able to know in advance what they will be dealing with so that makes it so much better for then to explain to the parents so that they can better understand whats gonna be going on. Just remember that everyone in the group here has been where you are in one way or another and can offer you all kinds of support. I pray that you can find comfort in knowing you have ppl who really do get what your going thru and can offer support and help. Hugs......Teresa

[JoeyG]

Teresa, it is people like you who give me hope! You all are the real miracles ..the ones who were the guinea pigs for these medical pioneers.

I keep telling myself that we are so very lucky for a number of reasons -- she was diagnosed very early, we live close to Primarys (one of the best pediatric hospitals in the West), we live in a day and age where survival is better than ever, we have good insurance, I have a wonderful husband and family ....we have so much in our favor. But ...I'm still scared to death.

Thank you for your strength, and for being my inspiration. It's the success stories like you that my husband, Bob, and I seem to grasp on to these days. Thank you for sharing with me!