Friday, July 17, 2015

Lorelai is THREE months old

Ok Seriously where has the time gone? How is She THREE months old!!??? I just can't believe it. It feels like just yesterday that they were rushing me back to take my precious little miracles.

First Cinco De Mayo?
But here we are...3 months...and of course the BIGgest, i mean HUGEst, BESTest news this month is that our beautiful little girl is HOME...H.O.M.E.!!!!!! saying the words out loud bring me so much emotion. I'm sitting here writing this and am fighting back tears. Every little milestone I took for granted with the boys means so much when you have a preemie and bringing your baby home when they are term is a huge thing...bringing your preterm baby home is MONUMENTAL!

So lets start from the beginning. Lorelai had a huge month. She started off the month in the NCC. I also went back to work. Being in the NCC with me working meant that I got to sneak in to see her a few times a night. It also meant that I left and hour early and stayed an hour or so after work to spend time with her. --so this mama was even more exhausted than normal but I'd do it again for my girl.

Lorelei's biggest and really only hurdle this month was feedings. She needed to take a minimum amount of oral feeds to take her NG tube out. Then she needed to continue to take a certain amount to come home.

I'm not sure if what we experienced with her oral feedings is normal, but it was FRUSTRATING! She took her first several bottles great and then it was like she realized this was hard work and didn't want to do it anymore. It felt like a huge struggle. But we eventually got there.

We spent my first mother's Day as a mom of 4 separated. It was really hard to not have my 3 surviving kiddos together. So I decided that we weren't going to celebrate until Lorelai came home. The day was so emotional for me. One of the hardest things for me is that all 4 of my children were never together. All 6 of us will never be together on this earth. And yes we know Laynie is in heaven and all that but hopefully it will be a long time until all of us are together in Heaven and mother's day was just a reminder to me of what I'm missing. Missing having my girl home, and will always be missing Laynie
Mothers Day
Mothers Day
One of my Favorite nurses made this priceless card for me
I cried when I opened this. It was so incredibly thoughtful

Enjoying some snuggle time
The Dr. that released her also happened to be the Dr. that will always hold a special place in my heart.  He was the one who tried so darn hard to save our Laynie. It really felt fitting that he was the one to discharge her. He had told me on a wednesday that he was going to trial her without her NG tube. and if all went well then she would be coming home saturday. Well then he tells me Thursday that since it had been 48 hours without any tube feedings (she was taking her bottles so well before they dc'd the NG) that she could actually come home the next day (FRIDAY).

car seat study time! one step closer to home!
Let me just say this...HOLY COW...IT JUST GOT REAL! When you have a baby in the NICU, especially one that is born 12.5 weeks early you know that NICU time is essential. You develop this routine to get you through the most challenging time of your life balancing your home, work and new baby life. Then those 5 little words are spoken...She gets to come home...and let me tell you the emotion that comes with those words. Holy COW! She is finally all ours, finally ours 24/7. then reality hits...Crap I had so much to get together and get before she came home. Diapers, bottles, bottle brushes, formula, sheets cleaned, clothes cleaned, the house cleaned, swing together, rock n play cleaned. It felt so good yet so overwhelming. We'd waited so long for this and it felt like it was just sprung on us, but in a good way.

We had oodles of teaching done, mainly on how to feed her. She requires to be fed by a bottle due to her bones needing preemie formula and her just being a preemie means she needs extra calories to grow, so we fortify my breastmilk with formula to give her what she needs. We follow a recipe to do this. She also had some testing done to ensure she was ready to go home. A hearing screen which she passed, and Oxygen test that checks to make sure her heart is pumping blood throughout her body and a car seat study to make sure she can be strapped into a carseat and not brady or desat. of which she passed :) once she passed all this we were just waiting on her NG to come out!! :)

I decided to do a little something for all those nurses who helped us along the way. I baked 8 dozen cupcakes. I gave 4 to the NICU nurses, 2 to the High Risk nurses and 2 to my unit. All of these nurses touched us and helped us get to this point so we felt we needed to celebrate with them. I also wanted to get some small gifts of appreciation for her primary nurses. I felt like I was running around at mach 2 with my hair on fire. And then it occurred to me to surprise my parents, sister and Adams family that she was home...let the scheming begin.

I was scheduled to work that friday so I of course had to call in... but i pretended to go to work like always so my dad wouldn't suspect anything. Then after I brought her home adam and I headed to my parents to pick up the boys (adam had worked late and my dad took boys back to his house) and surpised them all when I walked in the door not only just me, but with our girl in tow. It was glorious and I'm so happy I decided to surprise them.

Her NCC Home

Her NCC Home
I will not miss this monitor!!

Just had to take a picture of her Chart

Getting all cute to go HOME!
In her Car Seat Ready to GOOOOO

In the Car Ready to go!

after Loading her up in the car, we headed to my parents house to go pick up the boys and finally have all of us together!! What a beautiful day!! She came home on 5/15!!

Proud Biggest Brother!!

The fact that Lincoln's Face is blurry tells you how excited he was

Finally a picture of the 5 of us!!

Ive waited 10.5 weeks for this!
Having her brothers finally get to love on her was one of the greatest gifts I've ever received. Lincoln just adores her, and Landon is well a little in different and I think a little unsure about her. But i'm sure he will come around.
Morning after she came home. Lincoln was in Awe of her

Landon's face says it all. Not too sure yet. 

5/18/15 First pediatrician vist
Once she was home the real fun began. We have to set timers to feed her. Once again (THANK YOU LORD) we were blessed with an excellent sleeper. So good in fact that she doesn't wake up to eat. I have alarms set to wake up to feed her. Sometimes this is easy but most of the time it can really be a challenge to get her to take the volume she needs. But all the frustrations are worth it to have her home.

This month she has also started to have a little bit of reflux, which means she has PROJECTILE vomit a few times a day. But nothing we can't handle and it doesn't seem to affect her weight gain just yet. but if it does then we will be putting her on reflux medication.

So far Lorelai also has to go weekly to her pediatrician. He wants to make sure she is gaining the appropriate amount of weight.

Lorelai also had her first few outings outside the NICU and the house. Being that she had her normal two month vaccines already I was and am more comfortable taking her out into the world because she is luckily pretty healthy. My sister came down to surprise me and stayed with me for a few days and we took the kids to the childrens museum and to the monon center to swim. The boys really enjoyed themselves and I even dipped Lorelai's feet in the pool!!
First Outing to Lowes! 
at the Monon Center
Relaxing in her Carseat. It was hot so I took her sleeper off, I didn't want her to overheat
I just Had to

We also made it to her due date which was one of the hardest days for me. It was so full of what ifs. What if we would have made it to our due date, what if we could have gotten Laynie to the weight she needed for surgery. It was so emotional. But I spent the day snuggling all 3 of my surviving kiddos and trying to count my blessings, instead of what I didn't have.

On her Due Date
This month had just truly been a huge blessing to finally get her home. I'm so happy she's here and couldn't be more proud of my strong girl
First holiday at day
We also were able to do her "newborn" pictures with our photographer! Here are just a few of my favorites! 

And the 3 month Photos....

she was less than thrilled to be doing these, so I tried a pacifier

Lorelai I just love you more than you will ever know. I'm so proud of your fighting nature and how hard you worked to get home. You're a beautiful little spirit that I cherish ever second with. You have made me the happiest mommy in the world and I'd be lost without you.

Lorelai is TWO months old

I know I'm quite late in writing this, but what else is new? SO here it goes.

Though she be but little
she is FIERCE
I know I say this every month with every child, but I can't believe another month has gone by. So much has changed, Lorelai has made so many strides in the direction of coming home. It truly feels like we are in the home stretch! and should have her home in NO TIME! 

A few days before the Oxygen came off
Such a sweet face
First and foremost she has come off her oxygen!!! This was such a wonderful day for her! When you have a baby so prematurely you understand that oxygen supplementation is necessary. So the day that she was able to come off of it was glorious!!! She was on 0.5L of flow for several days. They tried her off her oxygen for about 10 minutes when she was 1 month old but she didn't tolerate it well and kept dropping her saturation level in the 80s, so they put her back on it. She just wasn't ready. -- I honestly didn't understand why the MD wanted her off it when she was requiring additional oxygen for the few days prior. Even though she hadn't required additional oxygen for 24 hours. --sometimes things just don't make sense to me.
My Little Joey

Lincoln got to meet her for the first time. Our wonderful photographer {who has practically become family!} had agreed to come take a few pictures of Lorelai while she was in the NICU, and I decided to for her to come when Lincoln could get his 1 visit. The NICU's policy is that children under 2 cannot visit, but children between 2-4 are allowed one visit. It was one of the best days I had had since giving birth to her. To have 2 of my 4 children together brought so much joy to my heart. He loved her, and loved getting to see her. He talked about it for days after! I also think it really helped him understand where I was going when I would leave him.

They dc'd her caffiene. She was on this to help with her bradicardic events. (drops in heart rate) She did excellent with this, not ever having to go back on it!! :)

One of the biggest things that happened this month was so many people finally got to hold her! My sister, my dad, my grandma, Aunt beth and some friends from work! It was such a wonderful moment having all the people who have loved and supporting me through each bad day be here to hold her.
My dad holding her for the first time
A little TT love

We also finally got to try to breastfeed...non nutritively. which meant I pumped, then I would try to breastfeed while they dropped her feeding in through her NG tube. She did ok with it. She would latch, take a few sucks, but it was such a wonderful experience for me. I love to breastfeed and even though I will never be able to exclusively breastfeed her due to her need of increased calories, just getting to do it a little was good for my soul.

She also moved from her incubator bed to a CRIB!!! BIG GIRL!! They ended up needing to elevate the head of her bed for her reflux because she would desat during her feedings. Once they elevated it, she did much better! :)

She took her first bottle on 4/21. This was a monumental moment for her! She was 7 weeks old and about 35 weeks adjusted. She had come so far and had made so many positive strides. It was wonderful for her to be able to finally take oral feedings. Over the next several weeks she was hit or miss with her bottles. Some days she would take a lot, others she wasn't interested. but all was a day in the life of a preemie.
NICU Home 
Her NICU Home

All settled into her new home in the NCC
Another huge milestone that happened was that she got moved from the NICU to the NCC. This was very emotional for me. In fact when her nurse told me I cried. Yes this was a good thing, and YES this was a step in the right direction, but the NICU was practically like home. It was the only place Laynie ever was, it was the only place that both my girls were ever able to be together. It was hard to say goodbye, but the NCC is nice, its quiet, its quaint and with my return to work, it is on the same floor. which is a huge bonus! I can check on her whenever I want!

Once she was moved, PT decided that she needed a halo pillow to prevent her head from getting too flat, it was basically a small donut that she placed her head in to help keep it round. :)

Adam Finally feeding her!
Adam and I also finally got to feed her this month. What a trivial thing that with the boys we took for granted. But being that both of us only got to be with her for a few hours a day, timing our visits around her feeding schedule could be hard. As well as timing Adam's visits period. Being that we are closer to summer he is working LONG hours again and some nights he was just too tired to travel back to the hospital to see her--which I can't fault him for. Plus the NICU/NCC is closed from 7pm to 8pm as they change shifts and it's very inconvenient.

The last thing that Lorelai accomplished this month was decreasing her feeding times. She gets a majority of her feeds through her NG tube (tube in her nose). She had one really significant event where she dropped her heart rate and oxygen level and struggled to bring both up while she was feeding, so they moved her to getting every other feeding through the bottle. When she takes her bottles they allow her to take as much of her volume as she can and then gives the rest through the NG. however every other feeding they just give it to her directly through her NG. Typically they put this on a pump for her and it goes in over a hour...this is to try and help her reflux. However just a day or so ago they moved it to go in over 30 minutes instead of 60!! This is all good news!!!

So this month Lorelai is 5lbs 13oz that means she has gained 2 lbs 8 oz...thats more than her birth weight!!!
She grew 7 cm and increased her feeds by 20 ml every 3 hours!
She's getting to be such a big girl! I'm really hopeful she will come home this next month!!!
She also moved from preemie clothes to NEWBORN clothes and went from preemie sized diapers to newborn sized diapers...we almost have a normal sized baby on our hands

A little weekly progression...she really has grown!

and of course the obligatory monthly photos...

Lorelai you are quite the little miracle. You have made so many beautiful strides to coming home. Though we always knew this NICU road would be a long hard one, you have made it relatively easy on us and we are so proud of you. I just know in my heart you'll be home with us in no time!!

Love you baby girl...keep growing and keep getting stronger!