Strange emotion

[jgmklmhem]

Just a little background.... Our second daughter was born with multiple birth defects (cleft palate...and craniosynostosis (fused skull plates)). She is now 15months old and has had her cleft repaired and has had 3 open skull surgeries because her skull keeps sealing and not allowing for her brain to grow. That leads me to ask this question about the emotions I have had regarding some of her surgeries. I guess it is the old boy scout in me or something...but everytime she has surgery I feel the need to plan and prepare myself for the worst especially due to the nature of her surgeries right near her brain..and each subsequent surgery being more risky. The worst obviously being death or some vegitative state. That is probably somewhat normal...but what makes me feel somewhat creepy is that every time she has had surgery everything has been ok and she has recovered quite well..other than the problem coming back..but even though I am relieved and extremely happy she is ok...a very small part of me feels as though I was almost wanting the alternative to happen I guess because I try and be prepared for it. Don't get me wrong I love my daughter and want her to have a long and prosperous life, but a small small part of me after all the mental preparation is let down when everything is ok. Maybe I am over prepared for the worst...but if it were to ever happen...please GOD don't let it...no amount of mental prep work would be suffcient. Maybe its just the stress of the situation and all. I don't know...just looking for insight...guidence...something. It has also happened when I was tested for cancer myself (which was negative)...but again the mental prep made a small part of me unhappy at the result.

 

[chell]

I'm sure it is part of the process of going through so much stress. You start to second guess what you are really feeling and why. Just keep loving her and always be there for her. I bet she knows just how much you love her!

 

[binny]

(((hugs)))


I cant immagine having to go through that stress. I think youre doing the best you can and thats all anyone can ask

 

[Disney Doll]

I'd agree that it's the stress of the situation overall. I can't imagine what it must be like to go through that once, let alone numerous times!

Best of luck for future good health for your daughter.

 

[LuvN~Travel]

It's just part of the normal process of the stress on your emotions. Our daughter was born with Crouzon's Syndrome and one of the things is craniosynostosis as well. She had to have two surgeries for that alone. You go through so much worrying about your child having these surgeries. It is so easy to second guess yourself and the docs. Who wants to put their child through that? But, the alternatives always make the decision for you.
Our daughter has been through so much as well, somewhere over 30 surgeries so far, and at least one or two planned ones in the future. (However, she also has hydrocephalus, so that can always mess up the schedule)
The best thing I can recommend is to become part of a support group, even online. With cleft palate there are many more support groups out there than we had access to. It is a bit more known and common. When we were finally able to get online and finally find a group for Crouzon's it was wonderful. You feel so alone before becoming part of a support group, and can feel so much relief afterwards. Only someone who is going through this like you can know how you feel.
We also have a few families on our group list who also belong to the Cleft palate groups, so i know there are some really nice people out there.
Good luck with your daughter. It seems so hectic and nerve wracking now, but with time the memories will be buried in the day to day living.
If you ever feel the need to talk just pm me.
Kim

 

[HugsForEeyore]

Just want to give some moral support! My nephew (he appears in the link in my signature with Esmeralda and Alice in Wonderland), has craniosynotosis. He was born with a syndrome called (something like) Acrocephalosyndactyly. He had two major skull surgeries as a baby, since like your DD his sutures in his skull kept reclosing. Does your DD have fusion of any fingers or toes? He has some webbing but not fusion, as fusion is often linked to craniosynotosis.

The surgeries were pretty hard on him, but he is 9 now and quite fine! He has some mild learning disabilities, like 2nd grade math is hard for him, but nothing too major. He reads and goes to school and runs and plays, and hates homework!

Having a child with birth defects is an emotional rollercoaster, that's for sure! Just wanted to send some from someone who's been there.

 

[ADisneygirl]

You are under a tremendous amount of stress every day living with a child so ill, and when these surgeries come up, the stress level rises even more. It's a wonder you are sane enough to carry the burden through another day.

Don't worry about second guessing your mixed emotions. Your emotions are all over the page every day, and having to try to prepare your mind for losing a child so often, I believe it is not unusual to have these mood swings about the surgery results. Part of your subconscious wants it all to be over with so that your mind can begin to heal, and I think that is why you are feeling the letdown feeling when the surgery goes relatively well. Your mind knows it is not over -- there are more surgeries ahead, each one riskier. When we are on stress overload our minds try to protect us -- self preservation kicks in, and you think those thoughts for a moment.

Don't feel bad. I believe you are doing the best in an impossible situation. God bless you and your family.

 

[AmazingGrace]

It's that post crisis let down. Every time benji comes close to his MRI time, I get all geared up, bracing for the worst, then when it's all clear, it's like i don't know where to put the crisis mode feeling. It IS like a let down. But then I'm so relieved about the results, it basically cancels every other emotion out.
Some times I get really frustrated that he has to have all these MRI's. I know their important, but every time we get good results, I find myself wondering why he keeps needing these when they keep showing up nothing.

 

[jgmklmhem]

Thank you guys for the support and the understanding. I has just been a rough 15 months. Sometimes I wonder if it harder on her mother and I than on her. Shoot 2 or 3 days after each surgery she is back to her old self playing and having a grand old time and I am still a stressed out nervous wreck as is my wife. At least for the time being she at least won't remember any of these hardships. Hopefully it all stops before she starts.

 

[liznboys]

Wow, what a tough thing this must be for you. All I know is that we parents worry so much about our kids, whether there is an actual reason to or not. And your situation is so much more intense than most parents... I have not been in your shoes, but IMO it sounds like what you're feeling is perfectly normal and understandable. Best wishes to all of you.

 

[piglet too]

I really think it is all part of the normal process of your mind dealing with the stress. Have you found a support group to talk to, that might help some, or just talking to a counselor, to help you work through all the emotions your family is dealing with.

 

[laurajetter]

Here's a possible idea:

I wonder if you feel let down because now that everything ended up being okay, you subconsciously fear the problem will once again happen, and you will have to go through the mental preparation process all over again.

You don't want to have to go through that arduous process again if the problem comes back, and even though you are elated that everything came out okay, you are resistant to the notion of having to go through this arduous emotional process again, and perhaps it would've been easier if the worst had happened. (not that you wanted the worst to happen, I understand that; maybe it was more your mind pleading with you to please not go through this again; you were all set to accept the worst, now the situation is fine, and you can't take this emotional roller coaster if it were to happen again.)

Don't know if that made sense, but it was just a thought.

Best wishes to you in dealing with this; I'm sure it must be hard.

-Laura

 

[dcentity2000]

From what I've learnt, it sounds like a negative placaebo. You've prepared so much for it your mind has reacted physically, making you expect the outcome, even though you dread it.

Although there is no magic solution to this and no-one could possibly say "I know what you're going through" or anything similar, there are some minor things that can help

Hot baths before bed affect the base of the spinal column (heat), relaxing you and aiding your sleep, in turn repairing your psyche better.

Chocolate acts as an mood elevator, so nibble on it a bit whenever you start to feel overwhemed - but don't go over the top or I swear you'll be sick!

You can get through this and your daughter has been through so much she probably already has

If you doubt this, remember: at least 70% of language is unspoken. Phantom pregnancies can be triggered simply by longing after the child that was never conceived. Cancers have been cured (albeit not regularly) simply through thereputic positive thinking and very gentle mood enhancing medication. There is a lot of power in your mind; care for it in little ways and it will care for you



Rich::

 

[jeleebeene]

Really, I think those feelings are normal in stressful situations. I have been there and have had similar feelings before. You try to prepare yourself so much, you are kind of let down that you were preparing for "nothing". Try this: next time, prepare yourself, but also try to be a little more positive. You can never prepare youself enough if something went wrong, but trying to think of a good outcome will make you feel a bit better.

Don't consume yourself with what if's - focus on the good and just know of the risks. And glad your DD has been doing ok so far!!

 

[kasar]

The human brain is truly amazing in how it deals with stress and trauma. It's kind of like you're in "fight or flight" mode and when neither of these situations are needed your brain gets all confused about how it's supposed to react. In other words, you're all geared up to react but then you don't need to.

Don't worry about what a "normal" reaction is. Your situation is anything but normal and you're entitled to react any way that gets you through this. Feel free to come and vent here anytime. And, yes, do get involved with other people that are going through the same thing if you can.

 

[LuvN~Travel]

He was born with a syndrome called (something like) Acrocephalosyndactyly. He had two major skull surgeries as a baby, since like your DD his sutures in his skull kept reclosing. Does your DD have fusion of any fingers or toes? He has some webbing but not fusion, as fusion is often linked to craniosynotosis.

Our daughter has the same diagnosis. But, I believe there are about 3 or 4 syndromes under that? There is Pffeifers, Crouzon's, Aperts, and I believe Saethre Chotzen. Do you remember if your nephew has one of these? The Apert's children are also affected by digital problems. Usually their fingers and toes aren't fully developed and they have to have surgery to build them. I had forgotten that webbing could occur with synostosis as well, though.
Give him a big hug for us.
Kim

]

 

[jgmklmhem]

She has the repeated fusing of her sutures and the had a cleft palate...but that has been it. We moved from FL to UT in the middle of all this so two seperate sets of doctors have had her under their care and none of the things you mentioned has ever been discussed. She has no webbing or anything but her head and mouth issues. Her cleft has been repaired and is doing well. She has had like I said 3 skull remodlings. It seems just recently that her skull is starting to get a ridge once again which is a sign that her brain is pushing out trying to get some space....so her 4th skull surgery might not be far off. We are going to see her plastic surgeon next Wednesday so we will see what he has to say.

 

[LuvN~Travel]

Uh oh, I think the quote function didn't work well for me. sorry, I was actually responding to someone else on this thread. That's what I get for side chatter.

In your case, in the long run, believe it or not, your daughter will probably have the lesser of two evils type of syndrome. I know that sounds crazy right now... but I've seen some amazing results of surgeries for cleft palate kids. My DH's older stepbrother has a son about six months older than our daughter and he looks amazing. And, it doesn't seem as if any of the surgeries ever held him back any. He acts and looks like any normal teen now.
It's just those first years that are so hard with cleft palate with all of the eating issues and surgeries. Of course having the synostosis issues on top is a pain now, but I think by age four or so it usually becomes a non issue, if I remember about our daughter's prognosis back then.

That ridge line does sound familiar too. Faith's ridge line when she was born was huge to me! I'm just so thankful that we had such good pediatricians when she was born. The hospital doc was such an idiot and couldn't figure out any of what she had. Who could NOT figure that babies don't have huge ridge lines down the middle of the head! Sheesh
Definitely bring any thing new up with your docs. It does help to have a good craniofacial team.
Kim

 

[jgmklmhem]

With her the ridge thing is a little different. She had the "traditional" ridge of the synostosis at birth...but the ridges she has been getting since then have been her brain actually escaping from her skull where she actually does have an opening. Before her last surgery her brain had come out above her skull by a few centimeters and we could feel it and such. It came out the hole that the previous surgery had opened...but since all her other sutures had closed the only way her brain could grow was UP. This past surgery they really didn't give her any soft spots. They removed a great deal of bone and placed dissolvable spacers in the openings to hopefully prevent the bones from fusing at least for awhile...but once again it seems to me that her brain is fighting to escape and she is getting a pretty big ridge starting about 1inch above both ears and crossing the top of her head. She is also getting a smaller ridge going across the head side to side near the rear of her head as well. Of course all the emotional baggage due to this has returned and all. Her last surgery was only 2 months from today!

As far as her cleft went my wife engineered a way she could breastfeed her and her growth wasn't a problem after that. Other than delayed speech and a few other minor delays she is pretty normal...but what can you expect from a kid who has already had 4 major surgeries in her life.

The other issue we have is...is it safe to fly with her. Her doctors say sure it is fine...but I fear do to any sort of intercranial pressure she might have the pressure fluctuations of air travel might be hard on her. It isn't like once we get up there we can stop at a gas station and cool off till the pain decreases. I am going to ask the docs again next week what they think, but it worries me. We have bought tickets to visit my family before Christmas...so I don't know. Does airlines have a refund policy when it comes to medically unable to fly?? Anyone know?

Sorry for the long post.

 

[Serena]

I don't have any advice. But I can tell your daughter has a great daddy.