Yesterday we got to see the plastics Dr regarding vanessa breaking the suture. Good news, no major harm done. Bad news, it did not stay in long enough to complete its job. It did however cause the palate to collase a tiny bit. Just enough that Dr feels ok doing a total lip repair in 6 weeks.
Dr says there is still swelling, thats why 6 weeks. She doesnt look swollen to me but... whatever. That puts her next procedure right around my birthday sometime. That is, if we are even still here. Freakin job market here in cali sucks, and Our unemployment income is exhausted, Tom is on weekly extensions. And SSI's idea of support for Vanessa is less than 400 a month, IE not enough. Suckage most foul. If funds dont improve we may be in Tennessee by july. How does that fix things you ask? no rent, less bills, new area to job hunt. How do we get there? drive. What about Vanessa? theres a craniofacial team in Tn too.
Really, people say things like:
"God won't throw at you what you cannot handle."
or,
"what doesnt kill you makes you stronger."
or,
" It could be worse."
I say.... ENOUGH. Yeah someone out there has it worse, it could be worse, we can handle it. But enough with the major stress factors ok? This mess is giving me more anxiety, I just want ONE stress factor to abate please? Make one problem go away???? Just one?
Thursday, May 31, 2012
Tuesday, May 22, 2012
Not all Daisies and Puppies
So, about a week after her first lip repair, she managed to break the suture that was supposed to stay in there. The cleft of course, opened back up to almost as wide as before. We call the Dr....
Dr. is in Guatemala until May 30th. Well F*&% me, what do we do now? Nothing, the nurse says nothing to do. We could see their backup at UCI, but they won't fix it, just make sure she is o.k. She has an apt with Dr on the 30th. I wonder what he will do, since most of his work will be ruined and she will be mostly healed.
Cuss words. Loads of cuss words. In multiple languages even.
Dr. is in Guatemala until May 30th. Well F*&% me, what do we do now? Nothing, the nurse says nothing to do. We could see their backup at UCI, but they won't fix it, just make sure she is o.k. She has an apt with Dr on the 30th. I wonder what he will do, since most of his work will be ruined and she will be mostly healed.
Cuss words. Loads of cuss words. In multiple languages even.
Wednesday, May 9, 2012
Ear tubes
Well, it went smooth as well! Hooray! Yesterday morning, bright and early, I had to be at CHOC/St Josephs 5am for check in and pre-op procedures. At 5:55am she was taken to the OR and by 6:20am she was awake in recovery. Talk about fast! super fast, lightening fast, Dr might be a robot fast. lol
She has ear drops, the name sounds like an antibiotic to me. But the after care specifically says "a fever would not be related to this procedure." Um... if you give an Rx for antibiotics, that means theres a chance of infection right? and infections cause fever. duh. But whatever, she wont get one because she was also on antibiotics orally for the lip repair from Saturday.
She is pulling through all this like a champ. Eats good, crys good, smiles good and wriggles herself out of the "no no" arm bands constantly. I finally just duct taped them to her sleeves last night. Yes, Duct tape... must be a hold over from my SCA days.
I suppose I could have made this some long drawn out post, but really, no need to when things go smooth right?
She has ear drops, the name sounds like an antibiotic to me. But the after care specifically says "a fever would not be related to this procedure." Um... if you give an Rx for antibiotics, that means theres a chance of infection right? and infections cause fever. duh. But whatever, she wont get one because she was also on antibiotics orally for the lip repair from Saturday.
She is pulling through all this like a champ. Eats good, crys good, smiles good and wriggles herself out of the "no no" arm bands constantly. I finally just duct taped them to her sleeves last night. Yes, Duct tape... must be a hold over from my SCA days.
I suppose I could have made this some long drawn out post, but really, no need to when things go smooth right?
Sunday, May 6, 2012
Her First Surgical procedure
Before.....
I have to say, before I even go into detail, that things went much smoother and she looks better than I ever expected. This is a nice drama free post. Horay! Our older daughter stayed home with Grandma for the day.
We got to CHOC at 5:45am, got signed in by security and only had to wait for staff to show up before immidiatly being taken to the SSU (short stay unit). At the SSU, everyone exclaimed about how happy our little girl was, how adorable her smile was... Very kind people, who obviously enjoyed their job and cared about the kids in their ward.
We got the pre-op checks done, and a very nice man, (the anethisiologist actually) carried her into the O.R. since we couldn't go in there. He talked about his 2 year old, and his almost due baby a couple times during pre-op discussion. He made us feel comfortable and safe letting our baby go with him. The Plastic surgeon was also very understanding and friendly, Dr Jaffurs has always been friendly and kind at every visit or meeting we have attended with him. I very much like our Plastics Dr, he is wonderful and I highly recomend him as a good guy.
I napped for the hour and a half (or so) in the waiting room of the SSU while they did the procedure. I was soooooo tired, I couldn't stay awake even if I wanted to. No nightmare about her not waking up this time either. For the first time in a week, I slept without bad dreams, in a mostly comfortable padded chair.
When she was finished, the Dr talked to us, and a little bit later we went to recovery to see her. She did NOT wake up a happy camper let me tell you! Do you blame her??? After she got mostly "functional" we were taken to a room. Not a private one, but the other baby in there was sleeping alot and the parents were very nice. The nurse was polite, friendly and easy to speak to, the rest of the staff was friendly though busy. Once she was eating o.k, they told us she could go home. We did not have to stay overnight because she didnt show signs of major problems and didn't vomit her food back up at all. We got home around 8pm.
She is sleeping well, thanks to the tylenol with codine most likely. She looks almost normal! They turned a completed large cleft lip into a partcial, incomplete. AND fixed her little nose quite a bit too.She wants to smile, but I think it hurts a bit. She looks alot like me now.
Her next procedure is for the ear tubes on Tuesday. Not a big deal, but I still dislike that ENT, although Dr Jaffurs assures me he is the best ENT and she is in good hands with that Dr as well. It should be an in and out procedure.
After:
not the best pic, but she was sleeping when we pulled out the camera again
and didn't want to wake her up.
I will post better pics in another post.
Friday, May 4, 2012
At the Starting Gate
Lets cut right to the chase. Tomorrow, Saturday, Vanessa get her first lip surgery. A Saturday surgery? Yup, even better, it's cinco De Mayo. How do I feel about that? Obviously I must be terrified because all week it's been nightmare central in my brain. Reoccurring dreams that she does not wake up from the anesthetic. Every. Single. night. Sometimes 2 times.
Our baby is of course, blissfully unaware that she is getting a major operation done. Although she has been pounding down the formula all week. One day she ate close to twice as much as usual! Growing baby. :) I cannot figure out how to explain to Aileen that her sister will look different, or that the "ouchie" she comes home with is a good thing. Ug...
My mom is coming over tonight and staying until we get back from the hospital tomorrow evening. She will take care of Ailee, so we can both be at the hospital.However next week, on Tuesday, Vanessa goes in for her ear tubes. They couldn't schedule them at the same time.There's a story there, so lets discuss.
The ENT did nothing to re-assure me that it is a simple procedure. In fact when I did ask questions, he behaved like it was an imposition. Not like it mattered to him that a mother was worried about her child getting 2 surgeries in 1 week. He is the one who asked if I had questions without explaining anything to me before hand.
BLARG GRRRRR BLAK SCREAM.
At least the Plastics Dr is nice.
Our baby is of course, blissfully unaware that she is getting a major operation done. Although she has been pounding down the formula all week. One day she ate close to twice as much as usual! Growing baby. :) I cannot figure out how to explain to Aileen that her sister will look different, or that the "ouchie" she comes home with is a good thing. Ug...
My mom is coming over tonight and staying until we get back from the hospital tomorrow evening. She will take care of Ailee, so we can both be at the hospital.However next week, on Tuesday, Vanessa goes in for her ear tubes. They couldn't schedule them at the same time.There's a story there, so lets discuss.
- The ENT specialist is supposedly on call this Saturday so couldn't come in for the 1/2 hour it would take him to do her ears while she is under at 7:30am.
- Regardless of the above stated reason #1, I think he just doesn't want to come in. Part of me understands that, everyone needs a day off but seriously...
- All this means that she will be under anesthetic 2x in less that 5 days. Full anesthetic for the lip,(breathing tube and everything) and a mask/lighter anesthetic for the ears.
- The ENT Dr was unconcerned (about anything frankly). The Plastic surgeon was not thrilled about such a small child being "under" 2x. The plastics Dr also indicated that the ENT has NEVER worked with him on scheduling before., not once. EVER.
- The ENT specialist seems like an ass with no bedside manners or people skills. My pre-op apt yesterday for him was at 11am. At 11:15am a nurse showed me into a room. At 12:15pm the Dr finally came strolling in, and what is the first thing he says to me??? "Any questions?" That's how you END a conversation jackass, not how you start one. I was rather pissed off but managed to keep my cool. Why did I keep my cool? Because he's the only friggin ENT available to do her ears.
The ENT did nothing to re-assure me that it is a simple procedure. In fact when I did ask questions, he behaved like it was an imposition. Not like it mattered to him that a mother was worried about her child getting 2 surgeries in 1 week. He is the one who asked if I had questions without explaining anything to me before hand.
BLARG GRRRRR BLAK SCREAM.
At least the Plastics Dr is nice.
Friday, March 30, 2012
Frustrations and Futures
So, last week was the first "big" Dr visit. We saw the 8 primary Dr's and nurses who will be involved in Vanessa's surgery's and therapy. Didn't really change much, they told us much the same things we have already been told.
1~ she will have several surgeries.
2~She will likely need speech therapy.
3~ She will likely be getting a surgery again in her teens.
What we did NOT know...
1~ At this point, being over 2 months old, she is no longer a candidate for NAM. Frustrating? yes, but only because the NAM could have reduced the number of surgeries and improved results.
2~ Sometimes, reconstructive surgery messes up growth rates of the facial structure. As a result sometimes once a CLCP child reaches their teens, they need to have their jaw broken.... Really?
3~ YES she is getting ear tubes. Apparently she already has fluid retention in her ears.
Lets discuss those new things in more depth shall we?
NAM no go: O.K. to me, it's a case of why cry over spilt milk? It seems to be upsetting Tom more, mostly because he feels like not doing it means we are not doing EVERYTHING possible to help our child. I on the other hand think more along the lines of, "not our fault," it costs to much, is too new a procedure, and CCS doesn't cover it under normal circumstances.
The reason they say she is to old is because of a certain acid or some such that is really high in newborns. It makes it easier to shape the rapidly growing bone, cartilage etc. Once a child passes 6 weeks of age, the acid reduces, making it harder to mold and shape the growing facial structure. For NAM to work effectively, it must be started within 2-6 weeks of birth. That's what the told me, and I looked it up some more online, so I accept this.
Breaking the jaw? Seriously?: Yup, you read it right. IF her growth rate is effected by these surgeries as a child, she will need this procedure in her mid teens. Somehow breaking the jaw and resetting it will adjust things and correct her bite and such... I personally prefer not to think about that right now, in fact picture me as an ostrich shoving my head into the sand here.
Ear tubes: When? likely sooner rather than later. Sometimes they hold off and do it during her first corrective surgery. I got the impression they want do do it sooner. If ears don't drain proper, they can get infected. Infection can cause hearing loss, temporary or permanent. Either way, hearing loss will effect speech development.
This week::
I am still jumping through hoops trying to get approval for SSI that would allow me to stay home and care for her. We cannot afford a loss of income so its this or I go back to work... Not really a good option since we would need a day care for both girls once Tom is working. I would be working to pay the sitter. Besides, many Day cares won't take Vanessa due to her special needs.
Now, this morning I got a call from the nurse to set an appointment. We get to learn how to "tape." As in put tape on her face to start moving the skin and prep for the first surgery. Hooray... I guess. It is like the NAM, but for the skin only...
So, come on every body, here we gooooooo.
1~ she will have several surgeries.
2~She will likely need speech therapy.
3~ She will likely be getting a surgery again in her teens.
What we did NOT know...
1~ At this point, being over 2 months old, she is no longer a candidate for NAM. Frustrating? yes, but only because the NAM could have reduced the number of surgeries and improved results.
2~ Sometimes, reconstructive surgery messes up growth rates of the facial structure. As a result sometimes once a CLCP child reaches their teens, they need to have their jaw broken.... Really?
3~ YES she is getting ear tubes. Apparently she already has fluid retention in her ears.
Lets discuss those new things in more depth shall we?
NAM no go: O.K. to me, it's a case of why cry over spilt milk? It seems to be upsetting Tom more, mostly because he feels like not doing it means we are not doing EVERYTHING possible to help our child. I on the other hand think more along the lines of, "not our fault," it costs to much, is too new a procedure, and CCS doesn't cover it under normal circumstances.
The reason they say she is to old is because of a certain acid or some such that is really high in newborns. It makes it easier to shape the rapidly growing bone, cartilage etc. Once a child passes 6 weeks of age, the acid reduces, making it harder to mold and shape the growing facial structure. For NAM to work effectively, it must be started within 2-6 weeks of birth. That's what the told me, and I looked it up some more online, so I accept this.
Breaking the jaw? Seriously?: Yup, you read it right. IF her growth rate is effected by these surgeries as a child, she will need this procedure in her mid teens. Somehow breaking the jaw and resetting it will adjust things and correct her bite and such... I personally prefer not to think about that right now, in fact picture me as an ostrich shoving my head into the sand here.
Ear tubes: When? likely sooner rather than later. Sometimes they hold off and do it during her first corrective surgery. I got the impression they want do do it sooner. If ears don't drain proper, they can get infected. Infection can cause hearing loss, temporary or permanent. Either way, hearing loss will effect speech development.
This week::
I am still jumping through hoops trying to get approval for SSI that would allow me to stay home and care for her. We cannot afford a loss of income so its this or I go back to work... Not really a good option since we would need a day care for both girls once Tom is working. I would be working to pay the sitter. Besides, many Day cares won't take Vanessa due to her special needs.
Now, this morning I got a call from the nurse to set an appointment. We get to learn how to "tape." As in put tape on her face to start moving the skin and prep for the first surgery. Hooray... I guess. It is like the NAM, but for the skin only...
So, come on every body, here we gooooooo.
Monday, February 13, 2012
Constipation too???
Poor kid, as if she doesn't have enough problems eating. She gets gas badly because she tends to gulp air. She is also on formula Instead of Breast milk. Well, we switched to the formula that is supposed to be better for fussiness and gas. It doesn't seem to be doing her much good. She is quite likely the gassiest baby I have ever heard.
Now, she has not had a bowel movement in 2 and a half days. She is obviously uncomfortable. She is exceedingly gassy. Her tummy is not tight, but she is definitely not a happy camper. So, tomorrow, if she still has not poo'd.... We call the Dr.
Ah, the joys of life.
Now, she has not had a bowel movement in 2 and a half days. She is obviously uncomfortable. She is exceedingly gassy. Her tummy is not tight, but she is definitely not a happy camper. So, tomorrow, if she still has not poo'd.... We call the Dr.
Ah, the joys of life.
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