Here's the Scoop...Or Some Of It....

Well another long hiatus from blogger land and I'm truly sorry. It's not that I haven't been checking in, I have, I just am up to my eyeballs in crap again and haven't had time to sit and do anything. Not that having 4 kids under the age of 6 helps with this either :p.

The crap is kids! I know they cause all types of problems but really I'm tired of the sick kid thing now.

So we were back in the hospital with Natasha in March for yet another 10 days. Our surgeon panicked and had us admitted for"observation". Now I'm not too worried about the whole "observation" thing as long as they actually do something while we are there. So we had a chest xray and waited 2 entire days for a consult with GI for, of all things, a g-tube insertion!!! I am so not happy about that prospect and have vetoed it until they can come to us with concrete evidence that it is in her best intrest to have one done. Of course that means that she needs to have the fundo as well. It defeats the purpose of having her tube fed if the reflux issue isn't dealt with as well.  We had a swallowing study done with mixed results.  Turns out she has a crappy suck reflex, which I knew about, and wasn't taking in large bolus' of formula at a time. It made it incredibly tough to watch the very small amounts go down and see where it went. We managed to piss her off royally when they changed the thickness of the formula and then the nipple on the bottle. She managed to get a bit in but easily got frustrated with it. They called it off when she got to the nectar thickened and sent us back up. Results in, she is micro aspirating the formula at thin and 1/2 nectar so we are to continue with nectar thick feeds and follow up with her tube feeds if she shows signs of distress. Nothing I wasn't already doing but it means that we can feed her by bottle while in the hosp. They put her NPO or nothing by mouth Thursday morning and by 8pm she was cranky not being able to calm and feed that way. She doesn't mind the soother but isn't too fascinated with it.

I was asked by the GI fellow that came up to assess Natasha what it is we want out of all of this. It struck me a very complicated question. What do we want? healthy kids obviously, but more to the point what is it that we are actually willing to do to get there? We have already done so much of this with Leigha that it seems very deja vu ish. I'm trying to keep them separate in my head since they have the same types of symptoms but they are two different kids. The cyanosis, reflux and feeding issues are the same in both but they both have different reactions to it. I don't think having Natasha get a g-tube is going to solve the issues at hand and from previous experience with Leigha we noted that once that tube went in everyone backed off and we are still fighting to have anything further done. They are both still refluxing up and that is therefore bypassing the cleft and into their lungs, so how is it helping? I talked to the original Speech Language Pathologist (SLP) I saw on the very first visit to the Stollery we had with Leigha all those years ago, she recommended a genetic consult and another opinion in regards to the repair of the cleft. So I managed to get the consult with genetics set up and plan on asking our pediatrician if she thinks our ENT is actually serious about fixing this or if we should look to someone else for the repair. I'm trying to be practical and I know that he may say no but I'd at least like to offer him the option to fix it before we go to someone else. He knows the girls, knows show they react to the surgeries.

Talking to everyone yesterday I discovered that they really have no grasp on where to start. Our ENT and pediatrician are following a possible allergy issue called Eosinophillic Esophagitis but the GI guy came in and said that she's too young to be considered for it. The GI guy is looking at the reflux as the only cause of the grey spells but my gut says, and has been saying, that they are missing something.

I feel like standing in the hallways and just yelling at the top of my voice for them to "JUST DO SOMETHING ALREADY!!" .

So they sent us home and we have been going about our lives here at home pretty much as we were before. I'm not tube feeding Natasha, for the most part I use the Ng tube for her meds (it keeps her from refluxing all day, very odd but it works) and we have finally found a bottle with a nipple shape she likes ( thank you Platex ortodontic!) and we have to swaddle her at bedtime :o Back and forth it seems every second day for appointments, almost like I live there some days, maybe they'll give me a parking pass!!

Got to Heck in a Handbasket

Well after MONTHS of showing up with a tease I am actually making a true effort to keep up with this. Make it my post New Years resolution, or some such.

So it's February now and Miss Natasha is now 3 1/2 months old and growing like a weed.She's weighing in at 15lbs 1oz and is 32ins long!! It's not been without hiccups tho and these past few weeks have tested her patience as well as mine. With all the stress I put on myself on trying the breast feeding thing, that didn't fly (the reason why will come) so I have been pumping daily and taking Motillium and slowly losing what little amounts I was producing as the days go by. I'm not terribly upset about it as she will latch and comfort nurse at night, which is nice in of itself, but very difficult to explain to Leigha who has never seen a baby nurse before :)

Last Monday Natasha was diagnosed with a Type 1 Laryngeal Cleft ( this is an actual surgical photo of the cleft with repair photos too FYI!!) . Yes!!! We have managed to do it again and  produced a baby with the same genetic hiccup as her older sister, odds of that are less than 1 in 20 000. Amazing!!! I seriouslyy thought I was making things up in the past few months, seeing things that weren't there.  But when others began noticing my "Blue baby" I finally said something along the lines of...."well yes I noticed it, she's been doing it all along". We saw our pediatrician in December for Nathaniel and I commented on it, before I knew it we had an appointment to see our lovely ENT January 25 and that same day we landed in the Stollery for 2  for 9 days having tests done. It blew my mind how on top of it they were this time round. I guess they learned from Leigha :p

So Natasha had an MRI done of her head and neck to look for any abnormalities there, EEG, ECG for her heart, chest xray and the visit culminated with the bronchoscopy and laryngoscope last Monday where they diagnosed the cleft. So while she was under the second time for the bronchosocpy and Laryngoscope they did the restalyn injection ( a form of collagen to bulk up the muscle) and brought her back to me, took them about an hour all said and done. Part of me was very relieved and the other was dumb struck.  I was very relieved that I wasn't becoming a manchausen and looking for a problem that didn't exist, and the second, that I was being practical and doing something quickly. We still ended up going home with a feeding pump and Ng tube in her nose :( She pulled it out today which means I get to re-insert it later on, sucks to be us!

I've already asked my MIL to scope out surgeons in Toronto and she has found one who actually does the repair should I need to contact him about the girls. I even have his email :o Neil and I are also considering a genetic consult as well to see who the carrier of this odd little gene is.


The only scary part of this whole thing has been the post surgical reaction Natasha had the next morning. Swelling from the injection or a possible allergic reaction almost saw her intubated and in PICU for observation. She narrowly escaped it when they gave her a bunch of steroids to bring down the swelling and help her to breathe. She sounded like she came down with a horrid case of croup in about 2 hours and turned this nasty shade of grey. It was terrifying since I only had my sister with me for sanity support. She's sounding better now a full week and a bit later but will still sound croupy when she cries and gasps alot especially at night. So I'm back to up very little bit checking on babies :p

So that's the new roller coaster we get to be on for a while. I'm not as upset about it all in a way. I've done all this before and know how it works. Except for the unusual reaction she had she is acting very similar to Leigha post injection and showing the signs of it not taking. I hope that once the swelling goes down we will see more of an improvement and if not then step 2.

The breast feeding thing, well I tried, we sucked, moving on :p I guess it wasn't in the cards breast reduction or not. She will at least get the benefit of EBM, which the others did not, until I dry up. It would be really nice to get rid of the ginormous breasts again :o I mean once you've decided to downsize them once the appearance of them again after almost 10 years is a bit disconcerting. I cannot believe they were ever this big before :o I'm so sorry those of you who saw me pre boob job! (tho Neil is NOT complaining in the least).

I'll be back this weekend with pictures for everyone of my growing brood. They are all so much alike its disgusting!