Thursday, May 31, 2012

Dr visit and life...

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?

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.

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?

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.

  1. 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.
  2.  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...
  3. 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.
  4. 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. 
  5. 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.

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.

Sunday, February 12, 2012

Go Daddy Go!

I am so happy for my husband. When we first brought Vanessa home, I was the only one who could feed her. Even then at first it was a struggle. We planned it that way, after a fashion. while she was in the NICU we only had the nurses work with me to teach her to eat, this way one of us was good to go and could teach the other later.

The plan worked, a bit to well. It was incredibly hard for Tom to watch me struggle through feedings, the screaming baby, and the exhaustion. I wanted so much to play with Aileen, but all my energy had to go into Vanessa. I was beat, battered, tired, and so frustrated I cried.. alot.

But for about the last 4 days, Tom has been able to feed Vanessa, sooth her, cuddle her, and rock her to sleep. Even during her peak fussy times in the evening, he has been able to handle her. It makes me so happy! Not just because it gives me a break, but also because it makes him feel better. He is sooo happy he can help, and that his daughter is responding to him in a good way.

Horay for daddy!!!

Thursday, February 9, 2012

Emotional review and some advice

I am pretty sure I am under control now, so this is more a review.Better living through chemicals and all that... A review of how I really felt in the last month. I mentioned some feelings in a previous post. Lets list the feelings first, then perhaps I can evaluate them and finish letting them go.

  • Resentment: I resented myself for looking at her face and seeing an imperfect child. I resented her for taking away from my time with Aileen and Tom. I resented God for giving me these problems to deal with.
  • Frustration: With Vanessa and myself during feeding times the first 3 weeks. With Dr's for not making things easier. My husband for not being able to feed her or sooth her at first, which was not remotely his fault. With insurance for to much frigging paperwork....
  • Anger: At EVERYTHING. I mean everything... The world, the medical field, the folks who make the anti depressants, myself, my husband, both my daughters, at friends for not having these problems, at the computer for being slow, the TV for not having the program i want to watch. Most especially though, angry because I felt anger.
  • Sadness: Rather self explanatory. I cryed a couple times a day. This is somewhat normal right after giving birth due to serious hormone fluctuations. I cryed because my older daughter wanted to play but I was to busy taking care of Vanessa. I cryed when I did play with Aileen because I felt like a bad mom for not spending more time with her. I cryed because I couldn't take a bubble bath until my belly healed. I was a water fountain someone forgot to turn off.
  • Joy: ah, yes, a positive emotion. I was thrilled that my body was mine again. Even with all the emotions listed above, I felt joy when I looked at my little girl most of the time. Especially when she was asleep, because a sleeping baby is a content baby, a happy baby, a baby with a decent mommy.
Vanessa had a very hard time eating at first. It was intense during feeding times because she would start screaming if she didn't get food right away, or if she got frustrated with the bottle. That seems to be fixed now with the special bottle, thank God. Nothing like an ear piercing scream to make a mommy feel terrible. And she would get so into the scream that she couldn't stop. We also thought she might be a colic baby at some point, but that seems to have stopped as well.

Lack of cuddle time with Husband and older daughter also had a major effect on my emotional state. Now that Vanessa is settling down and kind of getting a routine cuddle times and play times happen more with the rest of the family. It is very hard to adjust to having another child in the home. Aileen definitely gets jealous, but her over all attitude is curiosity and a want to help with "her baby."

Some words of advice: Every day, take time for yourself. Take a shower everyday, a real shower, not a 3 minute speed clean. Every day, cuddle with a family member other than the newborn for at least 10 minutes. Talk to someone about all your feelings, good and bad. Let other people help you, house chores, food, laundry, rocking and soothing baby... You are not wonder woman, nor do you have to try to be wonder woman.

Last but not least, your husband wants to help, Daddies feel rather useless when you first bring home baby. Many women do not think to ask their husbands for help, but the husband should be their primary supporter. Tell him what you need, give him something to do and tell him regularly how much you appreciate him. Daddy's get depressed too when the little one comes home, for many reasons.

Tom handles the cooking, the laundry, and he preps my coffee in the coffee maker every day. He also does most of the care of Aileen. Truely an awesome husband! Now that Vanessa is settling down, he is starting to handle her more and give me more breaks. Which in turn means I will be able to start taking a more active role in the household again.

Wednesday, February 8, 2012

A special bottle for a special baby

As I am sure you can imagine, it can be very tough for a baby to eat when the roof of their mouth is missing. They cannot properly latch on and suck because they need the palate to press their tongue against. Also, with the deformity of the top lip, they cannot close their mouth properly either.

You may ask yourself, "Why is it so important for baby to suck? Why not just squirt milk into their mouth?" Well, sucking is a very important part of their development. A baby who doesn't suck doesn't learn to use their mouth properly. I haven't had a Dr explain it fully to me yet, but I get the impression it has to do with speech development and their ability to eat properly as they grow up.

So, someone created a nipple for them. It is called a "pigeon." This nipple is very firm on top, and very soft on the bottom. The top side of the nipple then becomes a place for baby to press against. It also has a valve inside that helps regulate flow and keep the bottle from creating a vacuum. Somehow, this combination of nipple, and valve makes it possible for our little girl to suck from a bottle like a normal baby.

The bottles are not cheap, running about $20.00 each. But there are other bottles on the market  for "normal" use that cost almost as much. Also, for some reason, the instruction manual for the ones we bought have no English. There is Vietnamese, Chinese and I think Japanese... No English, no Spanish, not even French. That's funny don't you think? 

Tuesday, February 7, 2012

The first month

So, this month can definitely be considered the emotional roller coaster of the year for me. I came to terms easily with the fact that 'Nessa wouldn't be able to Breast feed. I planned to pump and give her breast milk. I could have too. I got my supply going, at least amount wise. However, her first week home she still lost weight. The Dr indicated my milk may be insufficient due to my stress levels. That is not why I chose to discontinue breast milk.

I stopped pumping because of my older daughter. You see, I wanted so badly to make sure she got enough mommy time that it drove me nuts having to sit there and pump instead of play with her while Vanessa was sleeping. I would literally cry while pumping if Aileen asked me to play with her. That is not a healthy situation so I made a choice. I chose to reduce my stress levels, spend more time with my children, and stop pumping.  So pumping only takes 15-30 minutes each time, but that's every 2 hours or so. Do not judge me for not feeding breast milk. I know "breast is best." Mentally healthy mommy is better.

I also started showing symptoms of Post Partum Depression around the beginning of week three. Knowing my history, and understanding that we have a very long difficult road ahead, I chose to go back onto my Zoloft. It has been one week since I started it again, and already I have managed to get through 3 days without a random crying fit. I would call that progress since crying occurred a couple times a day with and without reason. I am also no longer resentful of my newborn anymore either. I also no longer fear that I won't have the strength to survive this.

We saw the plastic surgeon yesterday for the first time. He outlined the process and gave us more information. He says that Vanessa is a good candidate for something called a "NAM." Its like a retainer that she would wear for about 6 months before surgery. It helps the mouth grow a bit more properly and reduces the amount of work the surgeon will have to do. Our main concern with regards to that is money. The specialist who does the NAM procedure doesn't take Medi-cal/Cal Optima or CCS. Which means we have to keep my work health coverage, and the weekly premium to pay for it.  

I think I am coming to grips with this reality. Vanessa is now gaining weight, we know the basics of the road ahead, and a routine is starting to emerge in the home life. We will have our bad days, I know this. The stress of caring for Vanessa, making time for Aileen and still getting any time with each other does wear on Tom and I. But I have faith we can make it work.

Vanessa's birth story

Vanessa was born on January 11, 2012. I wanted to have a natural birth, but that didn't happen. I am o.k. with that, I tried and that was the important part. The attempt at "VBAC" was for me. I didn't have a pleasant experience with my first daughters birth, so I wanted to let my body go through the hormonal and physical changes that occur with a natural birth. My hope was to stave off Post Partum Depression this time if possible.

I won't go into major detail regarding Vanessa's birth, but here are the highlights...

I had major active labor for close to 6 hours with no progress. Meaning I didn't dilate or change in real prep for the push phase. I was 2 minutes apart with intense contractions for a very long time, which usually causes some very good progress. After deciding to get the epidural, they put the fetal monitors back on, only to discover that Vanessa's heart rate was dropping with every contraction.

She was in distress, so the choice was made to stop the contractions. Both to stabilize her and to give me a much needed rest. I knew when they gave me the Terbutaline that I was going to end up having a repeat C-Section. The team at our hospital was exceptional. Professional, genuinely concerned , calm and friendly throughout everything.

After she was born, the Pediatrician suggested she go to the NICU since she was obviously going to have trouble eating. Better to work on this problem now, than to have her loose to much weight and end up there later. We agreed and she spent about 1 week there with the staff teaching us a good angle and monitoring her progress.

Reality check, Vanessa doesn't have a simple CLCP. It is considered severe. She also has a deviated septum, and the angles of the inside of her mouth are rather steep. She is fortunate in that the CLCP is only one side, but it is about 1.5 cm wide and almost centered so it is not easy for her to eat.

A bit about Cleft Lip and Palate

Vanessa was unplanned. There, I said it. Do I regret getting pregnant? No. I will never regret this wonderful little girl. I am frustrated by all of the things we as a family will go through. But before I really start going into detail, I want to explain a little bit about Cleft lips and palates.

CLCP defects do not run in my family. It is a chromosomal abnormality that my immediate family has no history of. CLCP defect occurs in about 1 of every 600 children, even here in the USA. This is a much more common birth defect than I realized. They are still working to figure out exact causes.

Studies have indicated that Folic Acid has to do with CLCP occurrence. I was taking a multi-vitamin, so I "should" have been receiving enough Folic Acid in my diet to prevent CLCP defect. The CLCP birth defect occurs very early in Pregnancy, during the first 3-5 weeks, before most women are aware they are pregnant.  There is also a debate going right now as to weather or not anti-depressants cause CLCP birth defects.

 I am sure everyone has seen the advertisements on TV about the class action law suits. I was taking Zoloft and Abilify for Depression and Anxiety when I found out I was pregnant. The day I found out I was pregnant, I stopped taking Abilify. My Psychiatrist indicated that Zoloft would be safe for the first 2 trimesters but Abilify was not safe. I chose to discontinue Zoloft as well a few weeks later. I weaned myself off that medication over the course of three weeks, taking my last dose at approx. 10 weeks along.

With all that in mind, I asked several different specialist doctors if my anti-depressants could have caused this. The over all response has been, and I quote...

"More likely it was caused by something in the environment."

 I cannot think of a more evasive answer. Wouldn't medications in my system count as "environment?"  I am sure I will be talking more about this in later posts. Many people are telling me to speak with a lawyer, even with doctors all saying, "no, the medication may not be the cause."