Small Happy Moments

Baby sleeping on my chest after a full tummy of Mommy's nummies...it is really getting harder and harder to leave her here...

Total Heart Break...

Kaylynn did not pass her sleep study, so she will not be coming home with us today. My heart is just broken in a million pieces, but she needs to stay there to make sure she keeps breathing. We are looking at this week on caffeine, stopping it on Friday, giving her 2 days free of it, then doing the study again on Monday...I was so hoping to have her home...

She stopped breathing once for about 10 seconds, and dropped her sat levels to mid-60's. She has some form of sleep apnea. They gave us the option to take her home, but it wouldn't be until Wednesday, they would give her major high doses of caffeine, and send her with a monitor to wear on her chest. Roger and I both decided that was not really what we wanted to do because if something were to happen to her, she'd be better taken care of if she's still in the hospital.

It was a really hard decision for me, because I want her home more than anything, but if we wouldn't get her until Wednesday, what is another few days and giving her the caffeine over a length of time instead of high doses all at once

Sleep Study

Got a tree, bought a new car seat, set-up the tree, and prepared to bring my sweet little girl home! We are crossing our fingers that she passed her sleep study and is coming home today. My insides feel like they're made of snakes.

Home Soon?

Kaylynn is now tube free! She nipples all of her feedings by bottle, and we're hoping the cogs are turning towards home soon.

"Thanks"giving?

Thanksgiving is going to be another bittersweet time for me...I am extremely thankful that she is doing so well, and so very proud of her. She took 21ml from breast, an entire bottle from me, and then 38ml from breast today. But I want her home with me so bad, and wish she could be a part of her first holiday with us...I want to stay here with her, but Roger put his foot down...

Healthy Eater

She is still off her Oxygen, and the feeding tube going in her nose now helps her to suck better from the nipple. She took 40ml out of her 60ml from breast at her 5pm feeding, and I was super excited! More feedings like that and she might be coming home!

They told me that I can now try 2 feedings a day from breast and see how she tolerates it.

They also did an Echo on her heart this morning, and we are hoping to know the results by tomorrow morning.

Her billys were back up to 11, but because of her size, Dr. Miranda told us that she won't go back under the lights unless it goes up some more.

One Less Tube!

No oxygen tube! YAY!! The nurses slowly weaned her off of 2 liters until she tolerated having it off completely. We'll call a bit later and find out if she is still okay and not needing the extra help. 

Next stop: Full feedings from bottle or breast!

In the Right Direction

Changes to note are the lights are gone for now. We are hoping we won't have to bring them back. Her oxygen was weaned back to 21%, which is what you and I breathe, but she's at 2 liters which means she just needs a little help still.

She took about 13ml from breast today, and I was very excited. She did such a good job, and then wore out very quickly. We probably would have had more, but I was struggling with the nipple shield and keeping it on. Her goal for right now is to take at least half of her feedings from nipple (either bottle or breast), and she's at 60ml.

We were able to talk to the Dr. that is taking care of her today. It's the first time I've met him in the week she's been there. He was very friendly and personable, and helpful in answering any of our questions and concerns. He said as a doctor his opinion is that she is doing great. She isn't feeding like a 36 week baby, but everything else is pretty much right on where she is supposed to be. He put her on a medicine that is hopefully going to help with the bit of fluid in her lungs and the water she is retaining from being on oxygen long term.

She also has a yeast infection from the antibiotics they had to put her on since she came before my Strep B test was done. So she is on a cream 3x/day.

We had a good day today, mostly awake and alert for feedings, no spit-ups or vomits, and taking nipple feedings pretty well. Just literally baby steps and I am so proud of her for every one of them that she takes!

Not Much Change

Having her here (in the NICU) is so stressful, and I just cannot wait to have her home...I'm still trying to deal with this, and some days are not as smooth, but I'm doing the best I know how.

Not much has changed in the last few days. She's still under Phototherapy, still on 25% and 2 liters Oxygen, still not taking much from the bottle and most of the milk going in the tube, and still dealing with erratic heart rate. But...I would rather no change than worse change.

Between trips back and forth, visiting her, pumping, trying to get things ready at home, trying to squeeze in time to get some other stuff done, I barely have time to breathe at the end of the day. Nana has to feed us, or we forget to eat even.

Not So Bad Afterall

It hasn't been as bad as I thought. I've been with her since 12:30 and they've been really lax about how long I hold her when I feed her and putting her back under the lights and such.

Big smiles brought out her adorable dimples, and boy does she have them! She was also awake for a long time after her feeding at 5, super active and looking around. She is going to be a night owl just like her mommy.

Back to No Contact...

Katy's billys went back up, from 3 to 13, so she's back under the lights...can't hold her again except briefly during her feeding times. I kind-of expected it because her color was really yellow when we left last night, but it still upsets me. Back to not being able to really hold her. ::sighs:: one day at a time, ups and downs...

Steps Forward, Steps Back...

Katy's O2 has been decreased to 25, she's taking 50ml of milk now and will until she leaves and is taking some of it from a bottle, and no more IVs! She was looking a bit yellow again when we visited a little bit ago so they're going to test her levels again to make sure the billys didn't increase again. She may need the lights again.

Outstanding!

Great news! Kay is off the CPAP, O2 down to 30%, in a crib, taking a bottle and wearing clothes! I do get to see her and hold her again, but masked for now. Back to cloud 9.

Beyond Words...

Hospital may have made a really stupid mistake that may cost me getting to see Kaylynn for up to 7 days...I am dumbfounded, nervous, and terribly upset. If I can't see her because of something they did, I will be very vocal about it...

Top of Form

Sarah White Oh my word what did they do?

Amanda Fetterhoff  They forced me to get the MMR booster before they would discharge me, even though I told them I didn't want it because I've had the vaccine before. Well...they don't allow people who've had a live virus vaccine within 7 days into the NICU. I'm supposed to find out today hopefully if I can still visit her.

Sarah White Oh man I'd be a bit upset if I couldn't see my child for 7 days

Amanda Fetterhoff Yea...upset doesn't quite cover it... :o\

Morgan Beisner Heads will be rolling...

Jessica Creitz Holy **&(, how do they force you to have a shot? And they shouldn't be able to tell you that you can't see your own child! Heads need to already be rolling.

Jina Boggs We found out they have been doing this to new mothers for 2 years. The NICU had no idea. Heads are rolling and we are filing a complaint to the board. I will see to that. I understand you need to be vaccinated but they know Amanda has a NICU baby and gave her a live virus shot. We want Kay safe and the other babies safe it was about time someone found out what they were doing.

Jina Boggs Good news she gets to see baby, she has to wear a face mask. The virus would be expelled from the breath. That takes a load off. I don't think they will be doing that again to any NICU mothers again.

Jessica Creitz That's absolutely horrible. I'm so sorry for you Amanda. You ladies let me know if there's anything I can do!

Jina Boggs Oh how they made her get the shot, they bullied her. Told her she couldn't leave without it. Amanda told them no and they just was matter of fact you can't leave. Amanda being tired and sleep deprived didn't realize they can't do that to her. I think she learned a lesson, you have the right to say no and refuse service.

Morgan Beisner I think I need to make another emergency trip to OK and strangle me some people. This is absolutely ridiculous. No way they should have been getting away with bullying people. If you can refuse lifesaving surgery, you can refuse a damn vaccination! omg. I'll wander off and vent in someone else's direction now....

Jessica Creitz That's absolutely sick. I have too many choice words for this kind of abuse to put here. Like I said, let me know if there's anything I can do!

Discharge Day...

I really can't wait for her to come home. I'm being discharged today, and the thought of going home without her in my arms or belly just kills me...I honestly feel like a piece of me is missing. I'm conflicted because I feel like this is one of the most trying and also the most amazing experiences of my life.

____________________________________________________________________________

Jean Kirkpatrick: Yes, it is…and the most stressful! So, take it easy, recover fully, spend some time with her daily, but limit it, until you get to room in…so you're rested and ready for her to come home! You two will no longer feel complete until she's home!

Update on Progress

Short update on baby Kaylynn. She is responding to the CPAP wonderfully, breathing much easier and keeping her RR and O2 levels more even. We are wondering why they didn't just do that to start with, with as well as she responded. The fluid change helped with her "mud blood" (hahahaha) and her purple feet and hands have drastically changed to a nice pinkie-red. She isn't actually Jaundice yet, but they said she is bruised and would get it, so the Photo Therapy is preventing her from getting it. She is still maintaining her own body temp. even without the swaddling, and seems to be a much more active and content baby today. They also increased her milk intake from 15ml to 25ml and said that when she gets to 50ml they will take away the supplement fluids she's getting.

I'm sorry if anyone got as scared as I was this morning, but after seeing her complete turnaround I am actually thankful they decided to do this.

Oh! and! My milk has come in! So, she has been getting fed only Momma's goodness with no formula to supplement it, and I am actually making more than enough to feed her right now (my last pumping was 106ml and before that 109ml). We are staying in the hospital one more night (I think, we still haven't really gotten a confirmation) and will work diligently tomorrow on getting everything we didn't have ready together (like the breast feeding/pumping stuff we will need now, since I can't actually put her to breast yet).

____________________________________________________________________________

Jean Kirkpatrick: With the bad effects that can happen with all these treatments, you don't do anything with a preemie unless you're absolutely certain you have to…especially with oxygen and such.

Amanda Fetterhoff:  I was scared to tears when that was going on, I'm just glad now that she responded so well, and am hoping she has a big leap forward after this. I know it was necessary...but at the time I was so upset, I didn't want anything else to be done to her. Does that make sense?

Jean Kirkpatrick: Of course! It's some of the worst moments of your life…really…you want them to be ok, you wish it was you and not them, you don't know enough to even know what to ask, and you're almost paralyzed with fear... I worked there for 3 years... Since she responded so well, she probably will just continue upwards. Preemies at that age usually just need a little boost! Especially if she's tolerating the feedings so well already.  I helped start SJ's unit. It's a good one. And your whole being wants to grab her and run!! And get her away from all that crap, and those people that hurt her! You're a good momma…just want to help your baby!!

Amanda Fetterhoff:  It's actually kind-of funny you say that…the first thing I asked Roger when they actually let me hold her was, "do you think they'd notice if I took off with her?" not 5 minutes later the nurse walks in and says something about her "calling" her and pulls out what looks like a cordless phone that "calls" her when something on her monitor goes off. Roger was like, "umm…yea"

Jean Kirkpatrick: I wasn't kidding!! That's the instinct to protect kicking in! I was totally serious about all those things! It's a horrible thing to have your brand new baby in there. It's really one of the worst stresses you'll ever have! Take care of yourself, so you're ready when she comes home!!

Switching to CPAP

Looking at her on the monitor at 1:55am on 11-14-10 after spending about an hour and a half with her, calming her down while they moved her head IV to her hand. We discovered she has her Mommy's lovely veins... That had to happen because the CPAP uses a little hat and it would have blocked the IV in her head. She is also under Photo therapy for jaundice.

Rough Morning...

Just want to let everyone know that Katy took a step back in the respiratory department this morning...They had to change her nasal oxygen to CPAP and administer a chemical to help her breathe better. They put her at a 5 of 10 on the "serious scale." It's been a rough morning for mom and baby, so just keep us in your thoughts today.

Kaylynn's Grand Appearance!

Facebook and corresponding comments:

Whew! It's been a very long 36 hours! I haven't had much time to update, but I promise one will be coming very soon. A short note: I had baby Kaylynn Lee at 1:23am on 11/12/10, she weighs 7lbs 4oz and is 19in. She is confirmed 5 weeks early almost to the day, and is going to spend some time in the NICU at St. John's Tulsa. Pics are coming!

Top of Form

____________________________________________________________________________

Beth Brad congratulations

Robin Wolfraim-Hunt  Congratulations Amanda, so happy for you and Roger. Give Kaylynn a welcome to the world for me. :)

Karessa Warner James  Congratulation girl…praying for fast recovery for you and baby so you can go home VERY soon!

Amanda Fetterhoff Thank you ladies, she needs all the well wishes she can get so we can bring her home. They said it's all up to her and how fast she can get off the oxygen and regulate her respiration on her own. We are really hoping less than a week, but we're being told 2 to 3, possibly up to her due date (December 18th).

Karessa Warner James oh wow…well we will pray its much shorter time span!! Congrats...

Gabriel Terrell Congratulations to you both! All my best wishes to you all!

Morgan Beisner ♥ Kiss her for me today!

Amanda Fetterhoff I got to hold her today! I am so excited I could burst. I feel like I'm floating on cloud 9, I was so sad about that and I feel much better now. :oD  November 13, 2010 at 4:00pm

Jennifer McQuade So proud of my little sis! You are handling all this so well and what a beautiful baby girl. I can't wait to hold her!

Amanda Blessen Parsons OMGOSH!!! She is SOO PRECIOUS!!! Major congrats guys! you did a great job mom! I'm betting you're glad to see that face now. Hang in there hun. I know she's still got some healing to do, but those little buggers are tough little cookies! The hardest thing in the world is for a parent to see their kids suffer and not be able to do anything about it. Anytime Tristen got really sick, it killed me. So I know it's rough right now. Just hang in there and send her lots of positive energy! *huge hugs*

Dawn M. Allenbach A disadvantage of me not spending any time on FB is that I just found out Kay was born. Congratulations, and I'm glad she's improving.

Amanda Fetterhoff Oh, I'm so sorry honey! I have been so *busy* that I haven't been able to make a blog update. As soon as I get a moment free to myself, I will try to update that. I feel like I can't even breathe on most days.

Update for This Week

Well...We finally got to see Dr. Stewart today. The reason I didn't update this by Week is because he is pretty sure that my due date is wrong. He thinks that I am further along than we previously thought. Her head and bones are measuring bigger (which have nothing to do with the way Gestational Diabetes babies are bigger, that usually affects the stomach region making the abdomen bigger than the head leading to the heavier weight and the chances to get stuck), and there is a calcium deposit that babies don't get until 35 to 36 weeks in their knees, and she has them. He said she weighs 7lbs 7oz. and since she has had a consistent incline with no sudden jumps in weight that she most likely won't have that now. He is pretty sure we won't have to worry about c-sections or inductions because she is going to come on her own, and he thinks before Thanksgiving. She has dropped down and moved into position and is fitting just fine in my pelvis, and he doesn't think she'll be more than 10lbs for me to have her naturally. She turned a bit, no longer face up, and is facing my right hip so there is a good chance she'll turn more into position in a couple more weeks.

My new goal is to try to get her to stay in at least two more weeks, because then according to St. John Owasso I'll be 36 weeks and can have her in Owasso. Dr. Stewart told me to go to Owasso anyways because she is healthy, won't need a NICU and will be fine. He told me to take it easy, and to really listen to my body and what it's telling me. So if I'm up and walking and having contractions, then I need to not walk that much.

So, we are back to the big unknown of when baby is coming! We are pretty sure it won't be in December unfortunately, but she is healthy, ready to come out and will do so all on her own. All good news! This is what we've been waiting 3 weeks for, to have this information from the High Risk Doctor. My next appointment is next Thursday with Dr.S. and we'll be able to discuss what he said with her and what she thinks about it. We will also check my cervix to see how that's looking and do a Strep B test.

We may have a baby in a few weeks!