Many Kids!

Too Long!

I believe the last post I wrote was shortly after Jordyn had her NG tube placed and I was talking about how 'ordinary' it seemed to have it there.  

Well, only a few weeks after Jordyn had the tube, I decided that I wanted a second opinion.  Here her Dr was, talking about Jordyn needing the tube until she was 18-36 months old.  This just didn't sit with me very well.  So, on September 2nd I took her to a new Pediatrician - actually, it is an OLD pediatrician that I used to take my older kids to when they were younger, but for a number of reasons, I ended up switching.  Anyways, I took Jordyn to see him and guess what?  The tube came out that day!  

His reasoning was that YES, Jordyn is severely under-weight, BUT she is also SEVERELY short!  So, here we were, pumping food in her to get her to gain weight, when really, even if she was 20 pounds, she would still only be 24 inches.  When the Ped plotted her height vs weight on the chart, and then went back every month since birth, she has been consistently on the 25th - 50th percentile.  He said that she doesn't have issues with weight, but with height.  He wanted to test her for a few diseases by testing her DNA, but since I had an amniocentesis when I was pregnant with her, all of those diseases are ruled out.  In other words, Jordyn is a "perfectly healthy SHORT kid!!"

And I couldn't be happier!!

When we got homw after that appointment I made a big deal of taking her NG out just ONE last time!  I can not put into words how happy it made me - I had TEARS running down my face.  But without the tube, Jordyn had to learn how to eat.  

The first week was hell.  She was awake 4 or 5 times a night because she was having hunger pains.  But because she had the tube in for so long (and she wasn't a big eater before the tube) she had forgotten that hunger pain + food + full belly.  So she would wake up screaming, nurse for 3 or 4 minutes and then fall asleep.  Only to wake up 45 minutes later still hungry.  It was a tough week for everyone, but slowly she learned that food made the pain go away.  So she started to eat and eat.  She would have predictable hunger times.  ANd she started to smile more.  Laugh.  She started to demand food when hungry.  SHe became a new baby.  She gained early a pound in just 2 weeks!  And that was more than she has ever gained in that short of a period of time!  So YAY!  Jordyn!

As of this past Tuesday she FINALLY hit the 13 pound mark!

Jordyn truly amazes me, all of my children do, but Jordyn is the fighter that I always knew that she would be.  I mean, here she is, a tiny baby who is the size of an average 3 month old, and she is crawling everywhere.  She pulls herself to standing.  She blows kisses, waves and is starting to use sign language (we are pushing the ASL since I think she may have a speech delay since she doesn't babble yet).  Jordyn can ANYTHING she wants!  And I can't wait to see her grow up and use her determination to become whoever she wants to be!

I will update about my other kids later in the week - but right now, it's all about my little Jordyn!

 

These pictures were taken yesterday at a corn maze an hour and a half from our house.  And yes, that IS dirt on her face!  All babies should eat dirt now and then! 

21 days...

It has only been 21 days since Jordyn was prescribed her NG tube.  It feels like a frigin' life time though.

We have a system; she gets 5oz at 9am, 12pm, 3pm, 6pm and then again at 9pm.  Between those feeding times, she has an hour to play.  And then an hour to eat.  She is incredibly exhausted.  

But the tube is NOT as bad as I though it was going to be.  Sure, it sucks.  But putting it in, taking it out.  Taping it down, and maintaining the sterility of the tube/ports is hard.  But it is becoming easier.  And second nature.

Putting a tube into your kids nose all the way to her bely SHOULD NOT be second nature.

Since July 7 her weight has increased slightly.  She now weighs 11 pounds 6 ounces.  So her weight is up.  But not UP enough according to her Drs.  They increased her feeds from 12oz per day to 25 oz per day.  Plus I am nursing her.  And getting 4 meals per day.  Her little body just doesn't want to grow!  She likes to be little!

Anywasyts, it is coming up to her 9 month birthday!  

This baby makes my heart melt every single day.  She is so incredibly perfect, and it amazes me how often I forget about her NG tube!  ANd then some idiot in the community says "what is WRONG with your bay!!??"

And then I go all "Mama Bear" on them!!

And we will pump...

No.  Unfortunately I am not talking about a breast pump.  I am talking about a NG pump.  Jordyn is EIGHT months old tomorrow and is still losing weight.  After weeks of pushing the food into her.  Watching her puke it up, breast-feeding to try and replace the calories, only for her to puke THAT up.  Wait 30 minutes and repeat.  5 times a day.  She is still losing.  

She is now 10lbs 13oz.  

At her last check-up on Tuesday (29th) her pediatrician, the GI Dr and the Home Nutritionalists have all decided that feeding Jordyn by mouth is just not the best option for her at this time.  I didn't cry, but I felt the tummy flips that always happen to me when I WANT to cry.  I just feel like I have failed her.  I love breast-feeding; and I have been able to nurse all of my babies until they self weaned (actually, I FORCED Alix off the breast at the age of 2.5 years old!).  All of my other babies were big and healthy fat chunky 6 month olds!  All right about the 20lb mark!  My body KNOWS how to make milk for my babies.  At least I thought I could.  I have tried everything in my power to increase my supply.  I have been taking medication and herbs.  I know that I am making the milk, but for whatever reason, Jordyn just isn't metabolizing my milk the way that my other babies did.

So, I am taking Jordyn to the hospital on Monday morning to take the NG course so that I can insert the tube, work the pumps and maintain her health while she is at home.  

I am scared to insert the tube; but I am confident that I will do it.

I am scared to stop nursing; but no matter what the Dr says, I am going to offer Jordyn the breast as often as she ants.  Even if I stop making milk and she only suckles.  

I am scared that Jordyn will begin to get food aversions; but I am going to offer her food as often as possible.  Again, no matter what the Dr says.

Her Dr wants to see her 10 days after the tube is inserted.  He is planning on keeping Jordyn on the NG for at least a month, probably closer to three months.  With a weight check every 10 days.  He wants to see her gain about 1-2 pounds a month.  His plan is to have her on continuous feedings for the first 10 days.  

One thing about continuous feeding?  It keeps the baby feeling full.  Jordyns little tummy will shrink - instead of her taking 3oz every 3 hours over a period of 45 minutes, she will be getting 0.5mls of formula dripped into her tummy every minute.  Her tummy will SHRINK to the point where she will have a VERY hard time working up to full bolus feeds (90mls every 3 hours).  Getting to that point could take weeks or even months.  And that is just to get her to take enough calories in as a newborn.  

Which means we will have to give her high calorie (very expensive!) formula.  This will upset her tummy.  Which will make her puke more.  Which will mean increasing her medications for her reflux.  And then we will have to add medication for her eventual constipation.  

Once on this roller coaster, it will be really hard to get off.  

I know that jordyn needs this NG tube right now - but I am scared of what the future will bring for Jordyn :-(

Happy 7 months!!

After 7 days at home, Jordyn has lost 3 ounces (now at 11lbs 9oz).  Which is not good at all, but really, her weight loss was much less than I had thought it was going to be.  Her dietician, is really worried though.  Mainly because, even with all of the weight Jordyn had gained in the hospital, she is really off the charts.

Chartpic.php

I'm not really sure how well you can see this chart, but I hope that you will be able to see her lack of growth for the past few months - it has actually been for about 3 months, but this chart is only showing 2 months.  

Anyways, it sounds as though we will have to get the NG tube put into place.  I'll have to take a few courses, even though I used to be a nurse and know how to do it.  However, I don't think I will be able to do it to Jordyn.  I am assuming that she will be tube-fed high calorie formula, and I will be encouraged to continue to nurse her.  But, eventually, my supply will diminish to nothing and then she will be exclusively formula fed.  Jordyn is still getting a few feedings of rice cereal every day, but my main goal with the cereal is just to get her used to the spoon and the texture of food.  Later this month, when she will be 6 months adjusted, I will start giving her baby foods.

Other Jordyn news:

• She is sleeping awesome!  Usually from about 8pm - 12am, 1-6:30am.  Sometimes she will skip the 12am feeding, but lately I have been waking her up to give her the extra calories.
• Her schedule is fairly predictable; up at 6; sleep at 9; up from 11-12:30; sleep until 3pm, up until 5, sleep from 5-6:30.  
• Jordyn has been able to remain on her hands and knees for about 2 minutes now!  I don't expect her to crawl anytime soon, but she may just surprise me!!
• Jordyn is rolling, not too much, but rolling no matter what.  
• Teething is coming along well, no teeth yet - but she grabs everything that she can get her hands on and shoves it into her mouth!
• She is just starting to really recognize Jason and myself!  When Daddy walks in the house, she goes crazy and she SQUEALS and reaches for him!  She will let him cuddle her for about 5 minutes before she attempts to jump out of his arms and get back to me.  
• Jordyn gives the BEST hugs and kisses!  After I nurse her, I put her on my shoulder so that I can burp her.  During that time, she will bury her face into my shoulder and attack my neck while she wiggles and sighs.  Then she pulls her face away so she can see my eyes, smiles, and then...she pukes.  Bleah.  Oh well.  The hugs and the kisses are awesome!
• We are still cloth diapering both girls, and I love it!  I never have to worry about running out of diapers!  And they have been so easy to keep up with.  Best thing I ever did!
• For the last few days Jordyn has been practicing her sitting!  She can maintain her balance for about 20 seconds before she completely falls over!

Her next appointment is on Tuesday - hopefully we will have a better idea of what Jordyn need to help her grow!

Jordyn is not doing really...

Jordyn is not doing really great at home.  In fact, about 75% of the time she pukes up most of her feedings.  She goes in tomorrow to get her weight checked - - but she has lost.  And I think a LOT!

I'll update tomorrow

HOME!

Yup, Miss Jordyn is back home!  7 days in the hospital and she seems to be all better now!  After many MANY tests, lots of sleepless nights (since she had to be woken up every 2 or 3 hours to eat), and having to see more Drs than I knew Edmonton had, we are HOME!!  She now weighs 11.5 pounds and is doing pretty good! 

We were able to come home without the NG tube (yay!) and I am to nurse her on demand.  But, and this is going to be a lot of work, I am to give her 5 medications 11 times a day.  I have set my phones alarm to tell me when it is time for her meds, but it is going to be hard to get into the routine of it all.  

She came home yesterday, the 25th.  And since then, her vomitting has been pretty bad.  But only because we weren't able to get her medications from the pharmacy - - they had to order them in for her.  Her puking was so bad this morning that it came up her nose and she was choking on it.  I really hope, now that we have the meds, that all of this will stop again and she will just grow.  

My house is pretty much destroyed.  Seriously.  I have not done laundry in a week.  The floors are filthy.  No one has cleaned anything - including the dishes - while I was with Jordyn.  Today I tried to play catch-up.  But with Jordyn being cranky/in pain, I wasn't able to put her down.  Tomorrow I guess I will have to clean...

Pictures!!

Thank you everyone for the prayers and well wishes - - they worked!  Jordyn is home, tube-free, and she is definitely getting bigger!

Jordyn update...

For anyone following me on facebook, you'd know all of the issues going on with Jordyn, but for those of you not..well, this update is for you 
For a few months now jordyns pediatrician has been concerned about her weight gain. She has been in the 10 pound range for nearly 3 months (she is now 6m and 3w) and she has started to even lose weight. The ped has been following us closely. I have been doing everything possible to get her to gain over the past 4 weeks; I bought a nursing supplemental system (as she nurses, I insert a tiny tube in her mouth to give her high calorie formula in addition to breast milk); I started Jordyn on rice cereal - making the cereal higher in calories by adding high-calorie formula to the cereal instead of water; I have been giving her as much breast milk as I possibly can. But even with all of that, Jordyn continued to vomit and lose weight.
Her dr had ordered lots of tests; EKG, routine bloodwork, abdominal ultrasound and a barium swallow. Still she lost more weight.
This past Tuesday it was decided that it was time to hospitalize her. Even though she is in no distress, we can't let her continue to lose weight. It has begun to affect her development.
So in the hospital she went. Since Tuesday, they have run test after test - everything has come back perfect. There is nothing physically wrong with her - so now they have put her on a ton of meds. She is getting: vitamin D once a day; iron twice a day; Zantac (for reflux) twice a day, prevacid (reflux) three times a day and domperidobe (for her slow GI system) four times a day. She also has an ng (feeding) tube in place.
The first 48 hours she was on continuous feeds. Then they put her on feeds every 2 hours. Now she is being fed 75mls every 3 hours to be run over 30 minutes. She seems to be tolerating it quite well, and the vomitting is almost gone!! Which is amazing!
It looks like she will have to be tube fed for quite some time though. On Tuesday I will receive training in order to learn to insert her ng tube and to work the pumps. I'm hoping to take her home on Wednesday!
I have been spending the days and nights with Jordyn at the hospital and I have been relying on a lot of other people to help me with the older kids. I hate not being at home with them,but Jordyn has started to have stranger anxiety, so I don't want her here without me.
I'll try to update later!

I didn't....

...let Cory eat 2 entire chocolate bunnies before sending him to the hospital.  At 8am.  Hyper much!?

....let Jenna go outside in just a diaper (cloth) at 7 am when it was 0 degrees Celsius

...drop Jordyn, while she and I were sleeping together on the couch

...do a quick painting/decorating in ALixs bedroom, which she now shares with Jenna!

I DO NOT....

....watch for the neighbor across the street to come out of her house with her kids before I send my own out - yes, adult interaction has become THAT important to me that I stalk my neighbors!

...use my 'stolen' hospital burp cloths as diaper inserts.  Nope.  Not me!!  ***but they work awesome!!***

...I also have NOT burned my families' mouths by adding just 'few' extra shakes of hot pepper to our meals - there was one day that the meal was SOOO hot that it took me adding 1lb of bacon + 1lb of hamburger and 3 cups of rice before the 2 cups of the original meal was tamed down enough that we could eat!!  Um.  OPPS!!  

I AM NOT...

...incredibly broke.  

...hot dog sandwiches are the latest things around here

....Cheeze whiz is a very close second

...PB & J would be a favorite - but jeez - - everywhere I look its "nut free"...I really feel that the 300 children within my kids school should have the PB & J option.  BUT because there is ONE child within the schol who has an allergy, WE all have to suffer.  **Yes, if I was that kids Mom, I would appreciate it.  But geez it's annoying some mornings when I don't know what to do for lunch!!**

...making my own cloth diapers out of my other childrens TOO SMALL clothes'  So far they seem to be working!

I DO NOT....

...have only 3 diapers for Jordyn.  By tomorrow she will be fully cloth diapered.  No matter what.  Because, what other options do I have!?

...want to get a job.  Although, right now in this "down" period with Jason it might be useful.

....feel guilty for staying at home.  

...feel any regrets for spending money on cloth diapers.  Knowing that the 10 that I have can last me nearly one full day.  Yes, I wash my diapers once or twice a day.  Always in non-peak hours!  

As you can see, cloth diapering has become more and more important to me.  At fist I started because I LOVED the cute printed baby butts.  But now, It is just SO easy!  

I honestly don;t do anything different with my diapers than I do with my other clothes.  Jenna poops in them?  I shake the poop out and throw it in my 'diaper-only' laundry basket.  When I am down to a diaper on each kids butt - I throw the diapers into the wash.  I wash them once on hot (heavy cycle - with 1/4 of the recommended laundry soap to prevent build up).  When they are done I throw receiving blankets, burp cloths and bibs into the wash with the diapers.    But I wash them on hot again - with NO soap!  And then I leave the diapers in the washer and throw in whatever else may be ready for a cold wash - sleepers, jeans, t-shirts...They run through the wash and they they all get dried.  Yes, cloth diapering (CD) takes a bit more work, but it IS working for us!!  And I am SO happy to have the time to CD my babies!!

Cory is leaving...

Well, I got the call.  My little man is heading to the hospital tomorrow morning for a few weeks.  Although, hopefully, he should be able to come home on the weekends.  Most children are able to, but I am not sure that he should come home if he is going through withdrawal.  

I am both so incredibly scared.  And I am incredibly excited.  I am scared because I NEVER wanted to send a child of mine away.  I am going to miss him like mad.  And I am feeling very sad just thinking about leaving him at the hospital.  He will have a very strict routine. He will not be able to go outside.  He will be in a locked unit - no glass, knitting needles, electronics, or anything else allowed that can be used as a weapon.  And the staff is trained in dealing with children like Cory - but they won't love him.  He will be their patient; they won't LOVE him!  I am getting Jason to come with me.  I have a babysitter lined up for Jenna.  I am so scared!

But I am also excited.  Its as though he will be beginning a new life.  Hopefully this medication will help him control him impulses.  Maybe it will help him make better decisions.  I am not sure what it will do - I just hope that he will be forgive me for sending him to the hospital.  And I hope that he will come back to me a happier child.

Cory is also getting really nervous.  He won't say it - but when I got the call on Friday to tell me that theyre was a spot available for him, he cried.  Scared tears.  And since then, we have been trying to pour on as much love on him as possible.  He is behaving SOO well since we got the call.  he is doing exactly what we ask.  It's almost as though he wants us to call everything off and keep him with us.  And I would LOVE to do that.  But I HAVE to send him.  It really is for the best.  

So tomorrow morning I will be walking into the hospital with my son and walking out without him.  I will leave him in someone else's care.  This child of mine hasn't been out of my care for years and years.  He hardly goes for sleepovers, so really, unless he is in school, he is always with me.  

My poor little man.  I am going to go crazy without him!  But at the same time, I am looking forward to having more time with my girls.  Time without having to yell and discipline Cory.  How horrible am I!?

So I am still waiting...

So I am still waiting on all of my cloth diapers to arrive.  I'm pretty excited about them!  

I can't say that I am doing it for the "good of the earth", but I think that they are adorable!!  And that is the main reason I want to cloth diaper (cd) my kiddos!  

But because I am still learning, and reading online, about diapering with cloth, I have to tell you something...

It's not as easy as putting a diaper (disposable) on.  You have to research the type of diaper you want; all in one?  Pocket?  Disposable liners?  Covers?  Longies?  Shorties?  Doublers?  Wet bags?  There is alot of stuff to know about cding!  Picking up a pack of Pampers is SO much easier...but I think in the long run it'll be best for my family.  But again, my diapers have yet to arrive.  

Jenna - oh boy!  My little sweetie wants to be a big girl - and I am not ready for this at all!  Yesterday I heard her talking in her crib, no big deal - I never get her out of bed until she whines or cries.  So, there she is talking.  I am in the living room.  All of a sudden the talking gets louder and louder.  And well, there she was!  She must of climbed out of her crib, opened her door (we never latch it) and come to say "hello!".  Jenna is an awesome sleeper - has been since birth, and I am not going to let her climb out of her crib.  She will be the child with a crib tent!