Indigo's Childrens Hosp visit

[5thtymachrm]

Well, we finally had our visit to childrens hosp today. wow did we wait a long time [:0](3 hours after our appt time we were finally seen) one of the specialists she was supposed to see, left and went on to her next clinic in a different office.

other than that, the doc we did meet up with was wonderful and so were the nurses. We found out that Indy has a disease/disorder called hemifacial microtia. She doesn't have hearing in her right ear and we won't know exactly how much hearing she has on her left until more testing is done in the next few months. they said they can't do any type of plastic/recontructive surgery until she is around age 5. she will probably need a speech therapist and several other things over the years to help her out. I guess this could have been much much worse, the doc said most kids he sees with this have severe problems with their cheekbones and jaw and Indy seems fine, there is also some issues that can come up when she is around 3 yrs with her upper cervical spine.

We now know that it was caused by one of my pregnancy complications[:(], the blood clot that I had early on. He said it was a miracle that she made it through that, most all pregnancies would never make it through what I had. She is a fighter, and my little miracle[:I].

The was quite concerned about me ever getting pregnant again because the same thing would probably happen. I will have to have some serious testing and lifestyle changes before I ever think about getting pregnant again. God only knows why I would want to go through all that again..lol. Indigo is more than worth all of that. I do have a five year plan for my next child and to ensure it I got an IUD placed that is good for five years so I can't change my mind. I am a little sad about it all but also relieved that we know what it is now and a plan of action about it all, and we have years till we really have to get serious about surgery and the like.

Does anyone know any other children with this issue? (hemifacial microtia) Thanks![:)]

Elizabeth
11/20/03 Indigo E. (born with no PE @ 37 weeks, 5lbs 13oz) (Pg Issues:hypertension(atenolol),hyperemesis, hypothyroidism, cancer remission, asthma, 8cm blood clot @3wks)
http://www.babiesonline.com/babies/i/indigopage/
11/17/95 m/c @14wks
1/97 m/c @3wks
2/98 m/c @5wks
8/02 m/c @3wks

[catherine]

Hi Elizabeth, I'm sorry that the news about Indigo's hearing wasn't better. Will she be a candidate for cochlear implant or will that depend on whether she has hearing in the other ear?

She is a darling baby, and no less perfect for these problems. Don't you start feeling guilty for what has happened. She wouldn't even be alive if you hadn't managed to hang on to her.

I think that you made a good decision about the IUD. While I am so happy to have Chloe, we had decided not to risk another baby. It's one thing to chose to try again, it's another to be facing something totally unplanned. It is a really hard decision to surrender your fertility earlier than nature intends and this way you will have time to come to terms with whatever decision you and DH come to. Yeah, yeah, I know that not every BC method is perfect but this one is pretty darn good!!!

Hugs to you and Indy,


Catherine (37)
DH, Dave (40)
Finn (6)
Lucy (2)Preeclampsia & HELLP
Chloe (7/2/03)
http://www.babiesonline.com/babies/f/finngoosensprout

[5thtymachrm]

Catherine,
No, the cochlear implant isn't a part of this. she is lacking the bone structure and possibly the nerves that go to the right ear. She will just have to sit in different areas of the classroom when she gets to school and will be seeing a speech therapist by age 2 or so. Things could look up after they do a special hearing test called the BAER(i think). that will be in a few months.

I know I couldn't help the blood clot, and I feel fairly good about it because she wouldn't have made it had I not nagged my old OB incessantly for blood tests and asking if I should be taking aspirin to break it down. she had the aspirin probably wouldn't hurt things so "go ahead". I'm glad I'm so good at reading my body. that is what saved my little angel[:I]

Elizabeth
11/20/03 Indigo E. (born with no PE @ 37 weeks, 5lbs 13oz) (Pg Issues:hypertension(atenolol),hyperemesis, hypothyroidism, cancer remission, asthma, 8cm blood clot @3wks)
http://www.babiesonline.com/babies/i/indigopage/
11/17/95 m/c @14wks
1/97 m/c @3wks
2/98 m/c @5wks
8/02 m/c @3wks

[taras mom]

Elizabeth, your little miracle baby picked the right mom![:)]

Carol (38)
DH Bill (40)
Tara Mairichi
12/7-12/9, 2002
The Mightiest Little Angel

[mada]

Absolutley she picked the right mommy!! I agree. You should be so proud of yourself for listening to your body and doing everthing you were able to do for Indigo. And she is an absolute doll[:)]. Hope the next hearing tests reveal good news for you all. How are you doing these days?

Mada Harpster

Sam 6-29-00 36weeks P.E.
Ben 11-03-01 No P.E.

[bonnie]

I am happy to hear that it sounds treatable, based on your follow up e-mail. ALthough, I don't have a lot of info, I hope this is helpful.

The BEAR hearing test is really non-intrusive. Yoni had it done before he was released from the NICU (I think it's pretty standard). They attach electrodes to their head and check to see if sound waves are being transmitted.

One of our closest family friends has two kids both born with a similar issue as Indi. However, they're cochlear is also misshappen. The son had the implant done when he was nearly 3 years old and the daughter had hers done at 10 months (the kids are only 13 months apart [:)]). THey are both doing wonderfully now. The son, who turns 7 next month, had a prostetic created and placed last spring. He's so proud of them (both ears are affected for both kids). The daughter won't have hers done until she is older. The mom was told that their case was genetic. I am happy to hear that they know what caused indi's!!

Yoni's ima

Yonatan 7/10/2002 (35 weeks PE)

[5thtymachrm]

Mada,
I am getting around to normal, still very sore and dificult to do much exercise. I am going back to work very part-time as a temp only starting on jan.26th. Indy will go with daddy to work [:D] or I will drop her off and pick her up from him.

I am having some issues with PPD/PTSD but I am not inclined to take meds when my thyroid is still out of whack. Not to mention I'm sick of seeing docs. I miss the dh very much, he is working 6 days a week, from 5am-10pm at work. He was supposed to telecommute half time but that won't work now that our house doesn't have a cable modem (not avail. in our area)[:(]

Elizabeth
11/20/03 Indigo E. (born with no PE @ 37 weeks, 5lbs 13oz) (Pg Issues:hypertension(atenolol),hyperemesis, hypothyroidism, cancer remission, asthma, 8cm blood clot @3wks)
http://www.babiesonline.com/babies/i/indigopage/
11/17/95 m/c @14wks
1/97 m/c @3wks
2/98 m/c @5wks
8/02 m/c @3wks

[paljane8]

I am so sorry about Indigo's ear. She really is a little trooper! And frankly, so are you. Keep us updated, ok? I am sorry you are going through ppd and ptsd. It makes things so bleak. I know someone in the Bellevue area who is fabulous and specializes in ppd. E-mail me if you want her name.

Hang in there, Elizabeth. You and Indigo are strong.

Nancy-35
dh-34
ds-8yrs
dd-7yrs
Scott-born 05-14-99 @38 weeks-PE
Janie-born 05-12-03 @37 weeks-PIH, small for gestational age (oligo and low blood flow)
http://www.babiesonline.com/babies/4/4lbs/