The birth of my two preemies

If this is your first time here, please read McKenzie's and Avery's birth stories!

McKenzie's birth story

Avery's birth story

Friday, December 31, 2010

my last blog of 2010

This year has been a crazy rides of higher than highs and lower than lows. When I started the year 2010 I said I said i wanted it to be better than 2009, and it was by far.  I experienced every emotion under the sun and my amazing husband was by my side through it all.
- Chloe turning 2
- McKenzie turning 1/march of dimes walk
- finding out i was pregnant
- buying a new (well used) car
- Avery being born breathing
- celebrating my 3rd wedding anniversary
- celebrating my nephews 2nd birthday
- being in the NICU (i have met some AMAZING people)

- Avery being born premature
- unexpected car repairs
- over $400 spent in gas to and from the hospital (thus far)
- hospital bed rest (even though it was just a short stay)
- being in the NICU, it is an exhausting experience
- splitting the holidays
- a friend passed away

My sister and I are closer than we have ever been, and I am truly thankful for her. When i went into the hospital in labor with Avery my sister was there in every way she could be. When I sent her the text that said "preping for c-section" with my hands shaking she was there. She made calls to friends that had experiences with VERY premature babies and even was able to get some preemie clothes for my little bit. 2010 has been pretty good to me, so i can't wait to see what 2011 has in store!

Wednesday, December 29, 2010

rough night

tonight was rough for me so i will post my update tomorrow, but i am so thankful that I have Bernie to text and talk to.

Tuesday, December 28, 2010

recipes for a cookbook

Today I received a message from a friend of mine who is also another baby loss mommy. She is making a cookbook of recipes sent in by baby loss moms and/or dads, the sale of these cookbooks will benefit the missing grace foundation. So if you are a baby loss mom and/or dad and have one you would like to send in, you can send it to me and i will pass it along.

Here is the original message:

I am making a cookbook featuring recipes from parents that have lost a baby due to miscarriage, molar pregnancy, ectopic pregnancy, stillbirth, neonatal death or infant death up to one year of age. The cookbooks will sell for $10 a piece and all proceeds will go to the Missing GRACE Foundation. This foundation offers support to parents that have lost a baby. Would you be willing to send me a recipe (or a couple) to put in the cookbook? Also, if your husbands have their own recipes, please sent those too. Include your recipe, your name, your baby's name (if you named them), and how far along (or how old the baby was) when you lost the baby. Please pass this along to anyone that you know of who have lost a baby. Thank you so much

NICU, day 65

I know I have been a slacker in the NICU updates on here but there really hasn't been many changes and we were without internet for a week so I wasn't able to update. Anyway, I really need to do better in writing my blog and not just NICU updates but updates and just regular blogs about Chloe, Phillip and myself too. I find blogging to be a really good way to release stress and help me deal with all the emotions of life. While we were without internet Phillip took me to starbucks one night on the way to the hospital and we were playing around waiting in line in the car after we ordered. Phillip jokingly told me that he wasn't going to pay for it and I couldn't have my starbucks, and i cried. Thats right, I cried over starbucks. LOL this is exactly why i need my blog, to help me deal with life so i don't get overwhelmed and cry over starbucks! I am really curious how many people actually read these things too. I mean really, anyone could read it and i would never even know since it is public.
anyway here is tonights update....
the good:
Avery is 5lbs 15.3oz as of last night. They are talking about going down on her calories in her milk (they fortify it) because of several reasons. She is taking full feeds and not de-sating so they may try bottle feeding at every feed in the next couple of days. Since being in cloth diapers (for like 36hrs now) her butt is no longer bloody and is healing nice. We still have a chance at bringing her home this weekend, we will see.

the bad:
her blood pressure is really elevated. They are taking it more often right now because of it being elevated. Today they did an ultrasound on her kidneys and they are doing a urine catch to run a urine analysis so they can test her kidney function. We are waiting on results now.

Saturday, December 25, 2010

merry christmas

Today is Christmas/9weeks/63days in the NICU. Tonight I walked around the NICU singing Merry Christmas to me because we walked in and the first thing Phillip noticed was that Avery is off of oxygen again. She is also now the size of a newborn at 5lbs 13oz. She is still in preemie size clothes and newborn clothes are HUGE on her. Tonight when we were in the NICU we dressed Avery up in her Christmas dress and took some pictures of her beautiful little self. After we took some pictures we put her in her Christmas jammies, took some pictures, fed her and then put her back in her bed.

Chloe had a pretty good Christmas too. We spent Christmas Eve at my sister's house so that Chloe, Ethan and Owen could all open their Christmas jammies on Christmas Eve and wear them to bed. We got up early on Christmas morning, Chloe was up at 6am and I was up at 5:30am. My sister made some homemade Cinnamon rolls and coffee for us (hot cocoa for the kids). Then we came to open presents with Chloe's grandma and all her other cousins. She had a great morning and loved everything.

Avery's primary nurse Bernie has really become more than a nurse to us. I told Phillip that she is one of those people that I can see myself having a lifelong friendship with. She is an amazingly caring and kind person with a heart of gold and she always knows how to make me feel better and makes sure i understand exactly what is going on. I know that when Avery is with her that she is getting the kind of care that I as her mommy would give her. I thank my lucky stars everyday that we met her.

I am a big believer in that everything happens for a reason. Through McKenzie's passing we have made some of the most amazing friends ever (thank-you HAND ladies and Susan if you read this). Now through Avery's premature birth I have gotten to make another amazing friend, and even reconnect with someone from the past (if you are reading this, thanks for also being a great nurse Jessica).

I was pretty sad today at having to split another holiday and Phillip really put it all into perspective for me. He looked at me today and told me "Better late than never honey, better late than never. We have already been through never once and if spending Christmas in the hospital means that someday we get to take her home then I will take it". He is right, so honey thank you for keeping me grounded and always knowing and loving my crazy self!

Friday, December 24, 2010

long time, no blog?

Avery is 5lbs 9oz and is down to 1L of oxygen at 23%. She is taking 50mL every feed (60mL is 2oz). She is being offered every other feed by mouth still and is starting to take more and more. She is 2months old today! Holy moly, the last 2months have flown by. She wont be home for christmas but i am doing OK with that. She is almost full term (my c/s would have been this coming tuesday at 37w) and she is starting to be more newborn like. She is WAY more alert and is even starting to get that newborn baby acne! She has so many rolls on her thighs that one is hidden and you can't see it until you take her diaper off!

i am sure that there is more that i am forgetting that i will remember and post over the next few days of getting back into the swing of things.

Thursday, December 16, 2010

NICU, day 53

Nothing really new to report today. Avery is still on oxygen and still doing pretty good at taking feeds. She had her first follow up eye exam today and that looked good. She is 4lbs 13oz now and getting bigger everyday. Luckily Bernie was her nurse today. After my mini breakdown yesterday about her taking some steps backwards it was really comforting to have Bernie there, she always knows how to make me feel better. Oh and the bigger Avery gets the lighter and more red her hair gets. Her hair is going to be nowhere near the red that Chloe's is but it is going to have red in it.

Tuesday, December 14, 2010

NICU, day 52

Tonight was a down night. I sat in the NICU and cried because i thought we were over this part but then i was slapped back to reality. Tonight when we walked in the first thing i noticed was tat Avery is back on oxygen. That in and of itself is not a big deal but she had a TON of de-sats today, that was really the straw that broke the camels back. I think i know why she had so many today though. The new order for Avery's feeds is 42mL with a bottle offered every OTHER feed. Well the day shift nurse today gave her a bottle for 2 feeds in a row and she basically let her eat until she was "full" so Avery took 45mL and then 50mL the next feed. Normally i would think that was great except for the fact that she let a baby that just came of off oxygen eat WAY more than she ever has. Avery has never even eaten that much by gavage, so i think she was just way too full because she has never had that much so then she was having trouble breathing.
My dream of having her home for Christmas is no longer even in sight. I knew that there would be ups and downs that come with the NICU journey and I know that in the grand scheme of things we have had and still have it pretty easy. On the other hand I can only get knocked down so many times before i can no longer get back up and I honestly don't know how many more times I will be able to get back up.
I hate that I am always stuck at home and when I do leave I have to be VERY aware of the time and getting back home to pump. I know Avery needs it and I know i want her to have it but I feel so trapped and stuck. I wish I could just get out, get a hair cut and and pedicure or something. I feel so down but man I have really gotten good at faking a smile.

NICU, day 51

Day 51 (monday) was a pretty amazing day. When i called during the day shift to check on Avery they told me that she had taken 25mL at one of her day shift feeds. This is big, it means that every time a bottle is offered she is taking AT LEAST 1/2 of her feed by mouth. So after Dr. Yao made his rounds he ordered her feeds to be upped to 42mL every 3hrs. When we got there after shift changed Phillip took her temp and i changed her diaper. Then i swaddled her back up and held her until her feed time. She was wide awake the entire time so we offered her a bottle and SHE ATE THE ENTIRE BOTTLE. Yep, she took her entire 42mL feed by mouth! That is the most she has ever taken by mouth, i am so proud of my baby girl. Seems like now she is on the up hill swing to coming home!

Monday, December 13, 2010

NICU, day 50

Nothing really new to report. We got to be there when they stripped her down and weighed her last night, she doesn't care. In fact I think she kind of likes being naked, LOL. Anyway, no new changes on her orders, she just really needs to learn how to eat from a bottle. Yesterday during day shift she took 25mL of her feeding and then when i was feeding her during night shift she took 20mL. She isn't taking whole feedings but we are making good progress, she is taking at least 1/2 of her feeding by mouth when the bottle is offered so i think that is pretty good. She was 4lb 10.3oz and 15in long, so she has officially doubled her birth weight in 7 weeks! I think she is definitely on the up hill slope to 5lbs which seems so crazy to me because of how small she was at birth. I still have so much to do before she comes home and i feel like i don't have the time, energy or money to do them.

Sunday, December 12, 2010

NICU, day 49

*** This is the blog i was going to write last night (on day 49) but was too tired***
49days already. Avery is 7 weeks old, wow I can't believe I have a 7 week old daughter! My beautiful little bit is turning more and more into a newborn and less and less like a preemie.
I can't believe how lucky I am, I have the most amazing daughters anyone could ever ask for. On the days I feel like giving up and quitting (especially pumping) Chloe and Avery both remind me that Avery is fighting in the NICU for me and I need to continue to fight for my girls. I need to keep on chugging along and keep fighting and doing what is best for my girls. Someday this entire experience will no longer be like a fresh wound and just a distant memory, but a memory that I never want to forget. Thank-you Courtnie for reminding me of that! I never realized how trying this would be, and just how many things Avery's premature birth would affect. I never realized what a strain this would put on my friendships and my marriage.

Anyway, Avery had another really good day. She took 20mL from her nipple feed during the day shift and 28mL from her nipple feed while we were there. They took her pulse ox off of her so while feeding her we can't just watch the monitor, we need to watch her face and her color. We need to know the difference in her color when she is breathing and when she is having "suck apnea" because when she comes home, those monitors are not going to come with her. She is doing amazing though and hasn't had any drops, our ONLY hurdles now are taking feeds by mouth and passing the car seat test. If feels so strange to be so close to bringing my baby girl home. I feel like when we leave the NICU for good, i will be losing a part of myself because they have now become a part of me.
Sigh, it is so bittersweet but I am really looking forward to moving on with both my baby girls by my side and their sister watching out for us!

Friday, December 10, 2010

NICU, day 48

So I guess we really are in the home stretch of our NICU stay. Avery is on a 4 baby assignment now because she is "on her way out". It is such a bittersweet feeling, I am so happy and thankful that I will *hopefully* soon be taking my healthy baby home but on the other hand we have spent the last almost 2months there and I am really going to miss going there. I have not only gotten to know the nurses but we have also gotten to know the security guards and the other staff too. Hell the castodian that comes in and cleans the NICU knows us by name.
Anyway, today I got to see Avery twice! My sister picked me up this afternoon/early evening so that she could see Avery since it is her (my sister) birthday. Avery is 4lb 4oz and doing amazing. Today during the day shift she took a full 40mL feeding by bottle! That is right, today Avery took her first full feeding by mouth. We tried to bottle feed again tonight but she was tired and only took 10mL, so they will try again later tonight. I am just amazed at my little miracle baby. So if you are reading this THANK-YOU for following Avery's story and her NICU stay and THANK-YOU to everyone who has been think of and praying for her.

Thursday, December 9, 2010

NICU, day 47

Tonight was one of the best nights i have EVER had in the NICU. We got there and the first thing we see is our baby's beautiful face with NO OXYGEN!! She is completely off of oxygen and did not have any de-sats today at all. They are now offering her a bottle for every other feed and she is actually taking feeds that way. Tonight while we were they i was able to bottle feed her and she took 30 of her 40mL feed by mouth. They didn't even gavage (her feeding tube) the last 10mL because they said that she ate until she was full and then fell asleep. She did amazing. That is the most she has ever taken by mouth and I got to be the one to do it! Such an amazing feeling. Avery is now what they call a "feeder/grower", she is only in the NICU now so that she can learn to take all her feeds by mouth. We are now seeing light at the end of the tunnel and it feels so damn good. I cannot wait to have both of my babies together with me at the same time! I am on a complete mommy high right now.

twas the night before christmas, the NICU version

I found this while googling and thought i would share.

Twas the night before Christmas, and in each isolette
Little creatures were squirming and getting all set;
Machinery sat by their bedsides with care,
In hopes that good breathing skills soon would be there.

Day shifters were home all snug in their beds,
As visions of overtime danced in their heads;
While preemies on ventilators, and some on CPAP,
Had just settled down for a long winter's nap...

When out in the hall there arose such a clatter,
The residents woke up to see what was the matter.
Away from the sink I flew like a jet
To make sure all was well at my baby's isolette.

Some bilirubin lights with their powerful glow
Gave the lustre of mid-day to babies below,
When, there before my wondering eyes, it would seem,
Was an oversized stroller and a medical team.
With a handful of needles with which they could stick you,
I knew in a moment it must be St. Nicu.

More rapid than eagles his specialists came,
And he whistled, and shouted, and called them by name:
"Now, Nurses! Now, Residents! Now, Neonatologists!
On, Social Workers! On, Respiratory and Occupational Therapists!
From the front of the unit! To the end of the hall!
Now dash away! Dash away! Dash away all!"

Up to each baby's cribside they flew,
With the stroller full of toys, and St. Nicu too.
And then, in a twinkling, they stopped at each bed
And tucked in the babies and got them all fed.

As I looked at my baby, and was turning around,
Down our aisle St. Nicu came with a bound.
He was dressed in red scrubs, and I could instantly tell
That his clothes had an obvious hospital smell;
A bag of stuffed animals was flung on his back,
And he looked like a peddler just opening his pack.
A little red pen he held tight in his teeth,
And a stethoscope encircled his neck like a wreath.

He was chubby and plump, with a few extra pounds,
And I laughed when I saw him there doing his rounds.
A turn of his clipboard and a twist of his head
Soon gave me to know I had nothing to dread;
He spoke few words, but came straight to my side,
And running down his face was a tear he had cried.

And laying his hand on the back of my head,
He gave me a nod, and slowly he said:
"Each night you come here you're aware of the danger,
But your baby is loved by the One in the manger."

Then the medical team gave a thumbs-up and smiled
And St. Nicu placed an animal next to my child.
But I heard him exclaim, as they rolled out of sight,
"Merry Christmas, tiny baby, and have a wonderful night!"

Wednesday, December 8, 2010

NICU, day 46

I cried at the NICU tonight, but it wasn't bad.

We walked in and I ALWAYS check the board for Avery's last name to make sure she is still where she always is, and tonight was no different. We scrubbed in and headed to room 3 and back to our little corner. Only tonight when we got there i started to panic because i didn't see an isolette where Avery is. Then i looked a little closer and felt relief because AVERY GRADUATED!! She graduated from an isolette to an open air crib and is holding her temp just fine! When i saw her swaddled laying in her big girl crib i couldn't help but cry. I was so happy and proud of Avery, my dreams of her coming home by Christmas could possibly be a reality the way she is going right now.
Avery took 20mL (half of her feeding) by mouth at her 5pm feed, then we were there for her 8pm feed and the night nurse said we could try again to mouth feed but she probably wouldn't take any because she had to work for her last feeding. Well i held her and sure enough she started to suck on the bottle. She took another 20mL for her 8pm feed!!! So 2 feeds in a row she took half of her entire feed by mouth, that is a HUGE step.
Today they weaned her down to 1L of oxygen and then tonight they weaned her down again to 1/2L. The ONLY desat she had was while i was feeding her at 8pm, she had a minor suck apnea desat and it only lasted 30seconds!

NICU, day 45

Unfortunatly we didn't get to go visit Avery last night. We got home from Sacramento around 11pm and the first thing i had to do was pump and poor Chloe was exhauted. By the time everything was said and done it was just too late to try and drive to Modesto, we would have risked Phillip falling asleep while driving at that point and it was smarter to stay home. I miss Avery though :(
I did call and get an update from her nurse though. Avery is doing great, no desats yesterday! They moved her down to just 1L of oxygen at 21% which is amazing, and looking like she will come off of the oxygen sometime soon hopefully. She is starting to be awake during feeds more, so that is a really really good thing for trying to nipple feed her. Other than that there is no other changes in her and no new orders. My baby girl is getting big but we still need to get her to take all her feeds by mouth.

Monday, December 6, 2010

NICU, day 44

OK I was too tired to write a blog last night so i will just put it all in todays update. Yesterday then moved Avery's feeding tube from her mouth to her nose so that she could get better suction when they try to bottle feed her, hopefully making her take more by mouth. Phillip went to visit and I decided to stay home and pump so that I can get my supply back up because it is seriously tanking!
Today we were able to go to see her earlier than usual because Chloe is spending the night at Nana's house. Avery is doing really well, 4lbs 4oz, so she has a full 2lb weight gain since she was born! I got to try to bottle feed her again today. She was VERY sleepy but she did end up drinking 10mL by mouth! The only problem is that when she gets a mouth feed she has "suck apnea" and forgets to breath, but hopefully she will get the hang of it soon. I am so proud of my baby girl, she is really a fighter. She is smiling so much these days, it really amazes me. They weaned her down to 21% oxygen today and she is tolerating well (with the exception of when she was bottle feeding). She got her first round of vaccinations already. Right now we just really need her to start trying and wanting to take her feeds by mouth, so if you are the praying sort please pray that she starts.

Sunday, December 5, 2010

NICU, day 42

Today was a really busy day and I have been up since 6:30am, it is currently 1am!
We didn't really get to spend a lot of time at the nicu today due to having our nephews 2nd birthday party and some other things today. Avery is doing really well. They did a chest x-ray today and he has some extra fluid (which i knew she did) so they are giving her a new diuretic instead of lasix. She should hopefully lose a little weight in the next couple of days. She is currently 4lbs 6oz though. They got the orders today for her first vaccinations and it will be 4 shots. However due to her being preemie they do her shots differently, they are spread over 2days (1 shot per shift per day). 1 hour before her shot is due they will give her a dose of Tylenol and then 30mins before each shot they will put numbing cream on her leg. She will continue to get Tylenol every 6hrs until 24hrs after her last shot was given. The best and most exciting news today is that AVERY TOOK A BOTTLE!!!!! During one of her daytime feeds (nurses are allowed to try a bottle feed one time per shift) Avery was really awake so the nurse decided to try the bottle, Avery drank 14mL out of the bottle. That is almost 1/2ounce, that is such a big deal to me and hopefully this is an upwards trend of her wanting to take a bottle. Avery also only had 1 de-sat today, and they didn't even consider it to be apnea because she was still in the upper 70s when she should be 80 and above.
All in all i would say today was definitely an up day for her, now lets just pray for many many more of these to come very soon!

Saturday, December 4, 2010

NICU, day 41

Today we got to the NICU right at shift change because we needed to bring breastmilk for her. Nicole and Candice met us there so that they could see Avery again and get to hold her.
After Candice and Nicole left we held and loved on Avery and when the time came we were allowed to try and bottle feed her her 8:30pm feeding. Well our nurse (whom we really really like) went on break and a different nurse was taking over for her while she was gone. While our nurse was on break we were attempting to bottle feed and Avery had a small drop (she was in the high 70's and she needs to be above 80) and the nurse came over. The nurse took the bottle from my hand, shoved it in Avery's mouth even though Avery was resisting. Avery choked a little, spit it all up and dropped even more. The nurse looked at me and said "well she is too young for this and not ready" and proceeded to try and take the bottle from me to put in in her tube, i told her "NO, we will wait" and the nurse walked away. ugh.

Anyway, we ended up tube feeding almost the entire feeding but i expected as much since we are just starting to introduce the bottle/breast to her. She is up to 40mL per feeding and doing well with it. Still at 2L of oxygen but down to 22% as of tonight! She had her very first eye exam today, her nerves in her eyes are immature (DUH, they are still developing). They also check for things wrong with the nerves and things like that and she is at a stage zero, meaning other than her nerves being immature there is nothing wrong with her eyes! She will continue to have an eye exam every 2 weeks and will likely continue after she gets home. She also got her first synagis shot today!

While we were in the NICU today they called over the speaker "we need a team to OR window 2" which meant there was a new baby coming in. Then not even 10minutes later there was a call "we need a team to window 1" and shortly after that "we need a team into L&D room 12". So tonight we got 3 new babies into the NICU so i hope their stay is easy and short lived. I really wouldn't wish the journey on anyone, but you make the best of what you are dealt.

Thursday, December 2, 2010

NICU, day 40

We had our hand meeting tonight, which i very much enjoyed (thanks ladies). After our hand meeting i figured i would be a little late to Avery's feed but could still try and breastfeed because her feed is timed over an hour. Nope, today they changed the orders and she is no longer fed over an hour, she i just fed like normal so i missed out on breastfeeding. The nurse told me that the day shift nurse (we all know how i feel about day shift) tried to nipple feed Avery today but said she was too sleepy and had no interest :(.  I am so bummed and feel like it would take a true miracle to have her home by Christmas. They tried to wean her oxygen down to 21% but she did not tolerate it at all so they had to put her back at 25%, I really feel like sh is not going to be able to wean off if it. They increased her feeding to 38mL and she is tolerating it well.

Right now I just feel like we are in a rut and stuck, i know that she isn't taking steps back and that is good but i guess i had my hope up higher than i thought about having her home for Christmas and I feel like crying.

NICU, day 39

Tonight we were pretty much on our own as far as Avery went. We changed her diaper, took her temperature, got her dressed and took her out of her isolette on our own. I have come to the conclusion that the day shift nurses DO NOT read charts. There is a note in Avery's chart that says to call my cell phone (and has the number) when they are starting to get low on breast milk because i have a whole stash in my freezer at home. Well the day shift never bothered to call and tell me they were low, and they never bothered to call and tell me they ran out. Instead they gave her formula, I know it is not the end of the world but i am pissed at the fact that they obviously didn't read her fucking chart. I am pissed that i pump every 2hrs all fucking day to give her what she needs and they fucking gave her formula.
Anyway enough of my rant. She is 4lbs 1oz and really looking good. I got to try breastfeeding again but due to them pushing her feedings back 1/2 hour (thanks to the nurse that fed her late) she was too sleepy to nurse. After i tried for a few minutes and nothing i decided it was just going to be a cuddle type of night. I cuddled her for a little while and then i let Phillip cuddle her. Phillip did kangaroo care with her for the first time tonight and it was so cute. Avery's eye exam was pushed back to Friday and she should be getting her first round of vaccinations this coming week. Other than that there is nothing new.