In Kaitlin's Name

There are many sites that have been created at this point that go along with my memorial for my little girl:

In Kaitlin's Name
All the things that are done in memory of our sweet baby girl is here.

Miscarriage Blankets
The site I made to describe the blankets and how to order them from me.

Their Garden in the Sky
Other people's little angels.

Angel Poems
A place for my poetry along with others.

Kaitlin's Memorial CD
Why I chose these songs and their lyrics

Looming for Angels
A place for my patterns

Walking for Kaitlin

I've created a March for Babies team in Kaitlin's name. We will walk at our local park to help support all those who have preemies who are in need of care. Without the March of Babies all the research that has been done to keep these little ones alive wouldn't have been done (or so quickly done). If you are interested in joining or donating check out our site:

http://www.marchforbabies.org/514962

Kaitlin's Cards

At the bottom of this page you will find a map to show where all of the cards came from to support us through all of this. Thank you everyone :)

Or here is the link: Map

In her memory...

I've moved all the links previously posted on the memorial site to this blog. You can see them by clicking on the candle. Or the comments to this blog.

:`(

Kaitlin came home today...

1 week

It's been one week since we said good bye to our little angel. It's not easy realizing that I will never hold her again or see her little face, but it is comforting to know that she isn't in pain anymore or having to endure transfusion after transfusion.

I don't think I ever really gave the explicit details as to why we choose to let her go, so just to clear any gray area here it is:

She got the infection on a Monday, which grew incredibly fast during the culture. The fact that it grew so fast was a horrible sign that it was a strong end fierce infection. They immediately put her on antibiotics and tried everything they could to help her fight it. They elevated her so she was laying at a slant to help keep fluids from accumulating in her lungs. Kaitlin also from the beginning had a platelet problem. She couldn't keep her levels at a normal rate so they were constantly giving her platelets, which platelets are important since they are the part of your blood that clots when you get a cut...she had many openings in her body that weren't natural from her surgeries and other various things that they needed to do to her (like her g-tube and the tube they put in her tummy on that Sunday to vent out the excess air, etc). When a preemie receives so many fluids it raises the risk of their tiny vessels rupturing, so they keep a close eye on their brain since that is the most vulnerable. They did a scan of Kaitlin's brain on Wednesday and our doctor called in the expert to relook at it on Thursday. What they found was Grade 3 bleeding (pretty serious) and because our little one had the platelet problem they anticipated that it would only get worse and worse, which would cause lots of brain damage (pressure on your brain is never a good thing and the blood had no where to go). We could have opted at that point in time to wait out the infection (that is IF she ever would have gotten over the infection) and hoped for the best, which would be that she might have some sort of consciousness without probably ever being able to walk, etc. That would have been the tiniest, itsy bitsy chance of the best case scenario...really we were looking at her organs failing (which her liver had already started) and she would have instead had a slow painful death. The fact that she also started having seizures that Wednesday night was just another sign that things were sliding downhill and wouldn't come back up (since it's another sign of things failing her).

So we grimly made the decision to let her pass peacefully in our arms that Thursday, in the NICU surrounded by all the beeps and whirs that she was accustomed to. It wasn't easy and it will never be easy to remember, but it was the best choice to make for our little one...and beside isn't that what all parents try to do? make the best decisions for their children? So even though I don't have a baby girl to cuddle with, I'm still a mommy...and some will say that I always have been :)

Comforting Words from a friend

There are no words to properly express the depth of love and loss that you have experienced. The journey you have traveled and shared with all of us has made Kaitlin a print on all of our hearts. You can be certain that her brief time with you will live on in the lives of all of us who know her story. May you find strength in each other, your families and the joy that Kaitlin is at peace without pain.

--------------------------------

Not to say that others haven't sent their own special messages and I do appreciate all of them but, this one is exactly what I am hoping for...that she will be remembered by all that knows her story and shared in her brief life :) Thank you Denise!

One Final Update

Kaitlin passed away in mommy's and daddy's arms at 10:07pm last night. She lasted 1 hour without the ventilator and even stuck around long enough for Daddy to hold her too. She said her goodbyes and passed peacefully in no pain. Thank you all for your support through this situation. Kaitlin will help future preemies with similar problems by now teaching to doctors about what went wrong. Later she will be cremated and will stay with us until Jason and I find a family plot where she will be buried. Even though we are sad, we are also grateful for the time we had with her and know that this was the best choice for her. She will always be the special child in all of our hearts.

-Tiffanie and Jason

In Loving Memory of Kaitlin Terra Herne

More of an Update

Kailtin has an infection, which is compromising everything in her little system. They need to get the infection out of her before they can even figure out how it go there to begin with. They think she is leaking bile into her blood somewhere. Its a pretty tough infection she has. ALso her liver is failing and they think other organs are to follow....She also can't keep platelets in her system. They transfuse her and she eats them up, they don't know exactly why...they think it might be the infection. Right now it's a waiting game. We need the infection to clear before they can think about doing anything else to her. The question is IF the infection clears. Because she has so many problems all at once that is why she has only a 20% chance.

Update

I don't have much energy to type everything that is wrong out...but Kaitlin, today, got a 20% chance of living...she's not good and we are facing the reality that she might not pull through. Thank you all for your continued support...

(this is the e-mail I sent out but I know some of you aren't on the list)

KAILTIN!

I'm ready for my close-up...wait maybe not...i'm blowing bubbles...hehehehe

Weekend Visit

We just returned from our weekend with Miss Kaitlin :) This is her bed in the NICU:

She looks very tiny in that big bed :) Grandma D's blankets are now there so the next time they do a bed change they will have some home made soft crocheted blankets :) And it'll be purple!

She was stable this weekend which allowed us to do alittle more with her...so I got to touch her head and hold her hand...daddy held her hand too!

We did this pic with out a flash so thats why it isn't as nice as some of the others. They took her little glasses off so we could see her eyes, which she did open a little here and there :) Not much though since it seemed tough for her to do so.

Daddy's little girl :)
Holding daddy's BIG finger

What a little hand she has eh?


We also went to the mall and bought her a her first book...The Bakers Dozen of Dr. Seuss stories :) The first story we read was The Sneetches (by Daddy's request)


Grandma and Grandpa Dineen also visited!

Mommy took these pictures...and Mommy doesn't know how to use Daddy's camera...

Kailtin Update:
They noticed over the weekend that she was developing a air bubble under her skin...which on Sunday they needed to fix since it began causing issues with her breathing. She now has an extra tube coming from her tummyish area. When it stops leaking fluids and such they will take it out and hope that solves the problem and that she doesn't need more surgery. They think it could be coming from either her tummy or intestines where she had the first surgery, they won't reopen her unless they absolutely need to...we are hoping they don't.

Her incision from the first surgery is practically all healed, they don't even have it covered anymore.

Because her kidneys work fine they are capable of giving her fats and proteins along with IV fluids so it will help up her weight :) Yay!

Tomorrow the surgeon will make the call of whether or not she can be fed
(through her G-tube of course)

Heart murmur is moderate to severe but the surgery to correct that is done at her bedside, it's just a matter of closing off an artery, she will have a scar on her left side from it. Atleast this sounds like one of the least scary surgeries she might have...I really hope the air thing is just as easy...

Kaitlin is ONE week old!

So she's made it a whole week and WHAT a week it has been for our baby :)

We haven't gotten any calls from the doc so that is a good sign. We have called a few times and found that she is stable, she is being taken back off the blood pressure medicine, her ventilator is still a little high but not as high as it could be, her color is coming back but slowly, we still don't know about the infection the first 24 hour blood test came back negative but another one is done at 48 hours and above all she is relatively stable.

On the phone now with the NICU: ventilator has been decreased a little bit, 48 our culture also came back negative so they took her off the antibiotics, still doesn't need any blood pressure medicine, is being blood transfused again (common with preemies), and hardly requiring morphine and sedatives :) :)

Kaitlin Update

This morning we got a call at 6:30 am, we were told that Kaitlin wasn't doing so well.

Over the night Kaitlin developed an infection of sorts, we won't know for another 24+ hours what it is. She is on antibiotics to try and start fighting it. So Jason and I decided we would take a trip up and see her, well so I could see her. Jason is sick so he can't visit her right now. Her coloring was terrible she isn't pretty pink right now, but the nurse told me that she looks better since her shift had started and the doc said her color was coming back from last night.

Her heart murmur is back :( The stress from the infection probably brought it back. However she doesn't see a need to address that issue right now, and that surgery probably won't be needed. They said that there is a chance that the murmur will close again later as she gets better.

Also while I was in visiting her the genetics person was there measuring her head and such to see what could be wrong with her...more so an explanation for everything that is wrong with her.
They made a guess that it is VATER association. Which is a nonrandom association of different birth defects. The different letters of VATER mark the different areas of the body:

• V - Vertebral anomalies (she does have a vertabrea that are messed up but shouldn't effect her walking)
  
• A - Anal atresia (not having a butt hole)
• T - Tracheoesophageal fistula (this is the trachea connected to the esophagus)
  
• E - Esophageal atresia (esophagus not connected)
  
• R - Renal (Kidney) and/or radial anomalies (this she doesn't have)

This isn't genetic, so we shouldn't have any more kids with this problem. Also if she has kids she won't either. But we are waiting for blood works to confirm all of this. More on this when we know more....

In the meantime we get to bring her blankets from home :) Maybe I will bring up this one that Grandma Dineen cross stitched...but I'm afraid the white might be stained...


I do have some other crocheted ones that will probably go ;) I just have to wash them in Dreft.

Wires and Tubs Explained

As promised here is the explanation of what all those things coming out of our daughter are:

(it might be easier to see the numbers if you click on the image to see it bigger)

1. These are her cool shades to wear under the jaundice lights
2. That is the ventilator, it does more than just give o2 it also will force a breathe in if need be and it also suctions out any fluid in her lungs.
3. These monitor her heart beat making sure it stays nice and strong
4. She has two of these suction cup like things, they are to do something while they are taking her vitals, i don't remember exactly what it checks though
5. That is where her incision is from her first surgery
6. That is the g-tube, right now it stops air from accumulating in her tummy, in the future it will be how they start to feed her breast milk.
7. Holds a little gauze over the whole where her colostomy bag will be
8. This had has a central line type thing in it so they can easily draw blood. This is preferred over having to cut her heals each time they need some. There also is an IV line in this arm where they can give her medicine that can't be directly mixed with her other IV line.
   
9. This is her main IV, where most of her meds are feed in. She also is now on IV fluid to give her nutrition.
10. This just monitors the level of oxygen in her blood, it's the same as that finger thing they stick on adults (no needles involved)
    

Kailtin's continuing journey

Before birth, sometime early in pregnancy Kaitline had something cause trauma to her brain. We aren't sure how or what caused it, neither are the docs. The abnormal part to all of this is that she is showing signs of this issue now and it usually isn't there until after birth (hers was there before birth) The issue: Leukomalacia which basically means--that there is a spot in her brain that is dead. The spot is in a small frontal portion of her brain. The issues that come along with this can range. The doc to me made it sound like it was small and that we shouldn't expect the worse but Jason got a different feel so we aren't sure what to expect. The minimum will be some developmental concerns that affect motor and/or intellectual abilities. On the other side of the coin we might be looking at cerebral palsy. Which from what I can gather on the internet means she could have spastic diplegia which could cause her some issues with walking, but she would still be able to walk. The worse case with the cerebral palsy could be quadriplegia which would render her arms and legs useless or difficult to use. So we are bracing ourselves for the worst but hoping for the best.

There is another issue with her brain however (poor girl I know) She has grade 2 bleeding on a part of her brain (which is common with preemies), however the location is the concern. It looked to the docs that she might be collecting spinal fluid above the bleed and if that is the case she will need surgery to fix it, however they are giving it time to see if it corrects itself. It's not emergent, the collection is happening slowly and will con't to do so, so they have time to wait. They say the surgery is unlikely. The are going to repeat an ultrasound in 14 days to see how the spot is doing.

SOME good news is that the hole in her heart didn't close after birth like it should have, BUT they caught it in time and corrected it with medicine (indocine)...if the medicine hadn't of worked she would have needed heart surgery, so that is one surgery she won't need to go through.

The doc did warn us that because she has so many surgeries, etc to be prepared that she will probably get an infection at some point which could cause a series of other problems...I do hope that that won't be the case.

She also has been taken off the dopamine, which was being used to stabilize her blood pressure. She also breathes room air most of the time, although she will keep her tube in until she is through all of her surgeries...

They are going to do genetic testing on her to see if all of her problems are related. It's a simple blood draw to do the testing so we gave the okay because some answer to all of this would be nice instead of hearing about how everything is unknown as to why...

Kaitlin will also be helping out future preemies, she is going to be a guinea pig for a new blood pressure cuff. Right now she has an internal monitor for her blood pressure but the company who made the internal thinks they now have an external that has the same accuracy, so they are going to check her both ways and compare. She already is used to having a cuff on twice a day so they are just going to work in the new cuff with her normal daily activities...

phew...enough for now :)

I know some of you mention coming to visit, as far as visiting Kaitlin i'm afraid only parents and grandparents are allowed in the NICU right now to see her. I don't know if that will change but they want to keep her quiet and sleeping as much as possible so she can heal more quickly.

WehadababyitsaGIRL!

So our little princess was born on February 7th at 10:04ish. She weighed 2lbs 10oz. We don't know her official length yet. My water broke around 9:20 so it all happened REALLY fast. She came out squirming, pink and even cried a little which resulted in her breathing on her own :)


I was then taken to surgery where they attempted to repair my torn apart cervix from me ripping through my cerclage. In the end they only gave me one stitch...the rest was too thin to repair, which means I will need a cerclage next pregnancy but really we knew that anyways.

Jason got the bad news first about our little one first since I was still in surgery. She has a few "defects", although you wouldn't know by looking at her :) :) She has:

Esophageal atresia which means that her esophagus stopped growing at one point and isn't connected to her belly. Her trachea however is complete allowing her to breathe on her own. 1 out of 4,000 have this problem.


Duodenal atresia which means that the part that connects her belly to her small intestine was blocked somehow. This means that any air she breathed in just kept staying in her belly, this was the cause of her emergency surgery hours after she was born :( It happens to 1 in 10,00 babies born.

Imperforate Anus means in the simplest terms that she lacks a butt hole. 1 in 5000 births have this issue.

ALL of these problems have NOTHING to do with her being preemie. Also during the emergency surgery they discovered that her intestines weren't in the right place so they rearranged her guts and then gave her an appendectomy since it wasn't in the right place to begin with so she would have needed it out eventually.

HOURS after signing the baby's surgery papers we finally got word that she came through just fine. They fixed her intestines, did the appendectomy, put in the G-tube to vent out air in her tummy and it will later be used to feed her, put in a colostomy bag tube because they will fix the Imperforate Anus way later and opened up the blockage of her small intestine. They were going to put a central line for iv access but they decided the was under way to long to do that. She came through the surgery without loosing much blood so she didn't need a blood transfusion. We got to see her later that night.



More to come later...