Kate is 4 months old and officially off Oxygen

Kate is 4 months old- 7.5 lbs and 19"- and officially off oxygen.

 

 

 

 

 A little bit of the Wilde side at my house

 

 

 A good friend of mine gave Kate this darling outfit-love the wild print.

 

These two babies take most of our time.  Usually it's Kennadi in Josh's arms and Kate in mine. Can't complain though, because there isn't anything better than holding a baby.

 

 

Last week we did the Oximeter Test on Kate.  She wore an Oximeter on her foot for 12 hrs. over night while we took her oxygen off.  We had to watch it constantly to make sure she didn't drop too low in case we needed to put the oxygen back on (I'll admit I did dose off a bit).  She was supposed to stay between 84-100 on her saturation level and she stayed consistent at 90 or higher.  She did great and we were able to take her oxygen off for good over the weekend!  It's so nice to not have the extra tubing hooked up to her, the tanks to haul around the house with her, and her face is now free from tubes and stickies- she almost looks naked without it on- like she's missing her glasses.  It will be nice to have all the oxygen tanks and equipment taken out of our room next week! 

 

We also switched her formula over to a new kind called Neosure.  She hates it and refuses to eat it.  We will have to use my frozen milk supply (which isn't much) and introduce very small amounts of the Neosure in it for the next couple weeks until she is accustomed to it.  Just over a week ago Kate started having a hard time eating and it's continued to get worse.  She drinks a little and then screams like it hurts to drink, then she drinks a little more and chokes on it.  When she chokes on it she takes 10-20 seconds to recover and start breathing again.  She tries drinking a bit more, but continues to have these problems.  So she gives up and goes to sleep without eating as much as she should.  Dr. Grandpa checked her to see if she was sick, but she looks good and healthy.  We bought some banana baby food yesterday and started putting it in her formula again to thicken it and she is eating better now.  It just baffles me why she has done so well without bananas for several weeks and now she is struggling again. 

In the NICU I became close with some of the other mothers in there.  One of them was Camille, Rosie's mom.  She was so good to us!  During the first couple weeks we were there she crocheted Kate a beautiful blanket and gave us quite a few preemie clothes for Kate to wear.  We checked on each other often and shared stories and triumphs with our babies.  She touched my heart that she was so giving and had reached out to us during a time when she was going through such a hard trial herself.  She opened my eyes that it was healing to serve and reach out to others.  I found that talking to other parents lifted and strengthened me.  When Kam was in the NICU I kept to myself and felt like I was in my own little closed world.  It felt like such a dark, heavy, and lonely experience in comparison to Kates.  I'm still so grateful for all the parents that I met and will forever hold them and their babies near and dear to my heart! 

 Camille sent Kate this cute hat as a Christmas present:)

 

 My sister, Jackie, made this super soft chevron blanket for Kate.

 

 

 We used the blanket Camille gave us to cover Kate's incubator.

 

Camille and I

Numbers

I might, sometimes, be a little bit obsessed with numbers:)  Kam was my third boy, and Kate was my third girl-the only preemies in the family-weird.  I still am amazed that Kam and Kate were almost identical in due dates and also the date they were released from the hospital.  Kam's due date was Dec. 2nd and Kate's was Dec. 4th. They were both released from the hospital at 36 weeks gestational age.  Kam was released on Nov. 9th and Kate on Nov. 8th.  That's the part that I am in awe of because Kate should have never came home that early for a 25 weeker.  Typical 25 week preemies stay in the hospital usually until at least their due dates, if not 2 to 5 weeks longer.  I don't think it was just a coincidence that Kate came home so close to when Kam did- I think it was one of God's tender mercies to tell me he was listening to me (and I'm sure also to relieve me of my crazy/stressful lifestyle).  Back on October 29th in the post "Feeding Time" I decided to throw out Kam's release date (Nov. 9th) to the universe. I never, never would have thought Kate would come home that early!  And she did- but one day earlier- I tried to get them to keep Kate until the 9th(I was scared to take her home), but they said that they kept her as long as possible and couldn't justify with my insurance to keep her one more day. I had to laugh and think that Kate was just trying to one up Kam- the competition begins.  So, Kate was released from the NICU 3 weeks and 5 days before her due date and Kam was released 3 weeks and 2 days before his.  Kam was in the hospital 61 days, Kate was in for 77 days.  I spent a total of 138 days or 19 weeks and 5 days at the NICU at Utah Valley Regional Hospital.  

As for why Kam and Kate were both preemies- we have no idea!  They think with Kam I had too much amniotic fluid and my uterus was measuring full term.  My body just couldn't handle it.  With Kate my doctor said he thinks I probably had an infection that put me into labor.  Chances are pretty high though when you have one preemie that you will most likely have another. My dad and OB discouraged me from having kids after having Kam.  All I can say is- I'm grateful that Kate came as my last child.  If Kinnli or Kennadi had been a preemie we would have been done having babies and I would have missed out on two of my greatest joys!  Another one of God's miracles!! 

Other random facts- 1 out of 8 babies are preemies.  One of the nurses told me that a study recently showed the statistics that in one year at the Utah Valley NICU they only had 9 out of the 900 babies they cared for that passed away at the hospital.  She said that most preemies leave the hospital with minimal problems.

A Way to Support and Give Back

It's been 5 weeks since I brought Kate home.   It has only felt like 2 at the most!  Funny how time seems to differ in lengths according to the circumstance-11 weeks at the hospital felt like an eternity and 5 weeks at home feels like a blink of an eye. 

Last night Josh and I had a Christmas work party in Orem which consisted of a very nice dinner and  a hotel room.   I Love, Love Josh's job with Azomite!  Such great people he works for and with.  This was the first date Josh and I have been on since at least the beginning of August- it was absolutely wonderful too.  We truly valued the alone time together and our relationship is so much stronger with love and appreciation from what we have been through.  The last 4 months we have been in survival mode and all our focus has been keeping our head above water by providing the basics for the kids.  Last night was a finally a time we could put all our focus on just each other.  I'm an advocate of frequent and consistent date nights, but it seems I'm also a hypocrite when it comes to pulling it off.  There is never enough time or money!  When you have more than 3 kids- the babysitter costs more than the date does:) 

Anyways- back to my point....
The hotel we stayed at was real close to the hospital where Kate was in the NICU. I didn't think driving past it would have such an affect on me.  As grateful as I am for the NICU, it was really hard to see it!  A place that I love with all my heart because it saved the life of two of my babies, a place that I love all the doctors, nurses, and staff, a place that I love because I know God and angels are with all those precious babies,  a place that I think is pretty close to heaven because the veil is so thin,  a place of miracles- including that of modern technology and medicine!

 

At first sight of the hospital, my stomach sank and I thought how grateful I was that experience was over.  But within seconds my heart broke for all those helpless, sick babies that are in there right now and all those disheartened moms and dads that were somewhere else without their babies. I couldn't stop the tears from streaming down my face (what a fun date I am). 

With my heart torn I thought back to my NICU experience.  During that time I had ideas of things I wanted to do to help make life there just a little bit better for parents going through such terrifying times.  I had ideas of things I wanted to do  to give back to the NICU.  I also had an idea of celebrating those little lives that were blessed by it.  Of course, my time was much too limited to do anything at that point.  But after my heart strings were pulled on last night for babies and families I don't even know-I now know I want to help- I know my heart will forever be attached to the NICU!

So, I just have to write the things down now that I want to eventually try to accomplish (it just might take years).   A goal is merely a wish unless it's written down.

First of all- I want to make a website called Passionate about Preemies. I want this to be a place that is for parents to share what their experience in the NICU was like, the ups and downs that their babies went through, the things that helped strengthen them to get through it, a few pictures of the baby as it developed and of course a picture of the baby as it graduates from the hospital. I want this to be a place where parents just starting on the NICU journey can go to find strength from other's experiences.  I want this to be a place of strength for all- a place with a vast array of experiences for many to fall upon.  I want this to be a place for the soul, where parents can find peace by drawing upon the strength of those that have already walked the path before them.  There are so many different stories out there that can be shared to help others.  I want them to be stories from the heart with  a few details of, but not just limited to the specifics of the medical journey.   

Second, I want to learn how to make sock monkeys and size them to fit the actual width and length of the micro-preemies.  I want to give them to the babies so parents can get growth pictures with them.  I looked a lot of places to try and find a stuffed animal to use as a comparison with Kate, and I never found one that I loved.  A lot of times parents use a dollar bill or a pop can, but that's not really something that will be kept as keepsake. Parents can use the sock monkey to show friends and family that can't go into the NICU the size of their baby.  It's so hard to visualize or explain how small they are.  

My last idea for now, is that I want to put together a preemie 5K.  I want all preemies young and old, their families and their friends to support the 5k.  I think it would be neat to unite all these precious souls for a greater cause to give back.  It would be a non-profit 5k and the proceeds will go to the NICU to pay for needed equipment.  I'd also like to see some of the proceeds go to a professional photographer that could work for the NICU to take pictures of all the babies to give to the parents. Babies that are in there anywhere from 48 hrs. to several months. It would have to be someone that had experience with these fragile and sick babies.  It wouldn't be like a normal photo shoot, but a shoot of the basic experience of all the machines and things surrounding the baby.  Pictures of the baby without much contact or movement of the baby.  I loved the pictures that Victoria Harris took of Kate, but I also would have loved some pictures at the beginning of the experience when Kate was so tiny with all the machines and tubes she had surrounding her. 

If anyone out there has a desire to help, ideas to share, or knows how to accomplish any of these things please let me know.

NICU Photo Shoot

The nurses must've had a little photo shoot when I wasn't there:)  They gave me these pictures on a cd when we were discharged. Kate was 35 weeks gestational age or 10 weeks old in these first few pictures.

If you look close enough at the picture above- the nurse even did Kate's hair in  a little Mohawk:)

 

 

The following pictures were taken by professional photographer, Victoria Harris.  She recently had her baby in the NICU.  She volunteers her time and takes pictures of NICU babies for free to help make the journey a little easier for families. I'm grateful she did this for us- these pictures are priceless! 

Kate was 36 weeks in these pictures and weighed close to 4.10 lbs.  Just the day before she had her g-tube taken out of her nose for feedings.  And earlier that day she was tried on room air to see if she could be sent home without oxygen.  She did pretty good except for when she ate she needed the extra help.  When Victoria came to take Kate's pics, the nurse said we could take her oxygen off.  These were the first pictures taken of her tube and monitor free!!  We were also able to handle her a bit more than usual, because we knew she was so close to going home and was pretty stable. 

 

 

 

 

 

I ordered this outfit from a website that was selling clothing for 18" dolls. (American Girl Dolls) 

I thought it would be fun for her someday to dress her doll in these clothes.  

(She was done-had a enough of the photo shoot)

Back to Bed

Kate's Due Date

Kate has finally reached her due date this week- 40 weeks gestational age and 15 weeks old.  I took her in for a Dr. Grandpa appointment and had labs done on her.  Her protein has went up and looks good so we can switch her formula to Neosure now.  She is still low on iron to help produce the blood cells she needs so I will be doubling her dose of iron now.  In the last 2 weeks she has gained another pound and another inch- 7.2 lbs. and 19"!!  She is doing so good!  We will probably be able to take her off oxygen in the next couple weeks.  She also received the $900 dollar synergist shot that she is approved for once a month until May(thank goodness for insurance:).  This will hopefully help protect her against RSV. She still mostly eats and sleeps.  She doesn't hiccup or get startled quite as much anymore.  We have to laugh at her because whenever she is awake she grunts and makes all sorts of funny woodland creature noises- reminds us of E.T. 

I keep meaning to write more posts, and although life is wonderful and the hard crazy has slowed way down- I feel part Zombified. With all my newborns it seems it takes me at least 2 months to adjust and get used to thze sleepless routine.  Instead of staying up until 11ish to write, like I did when she was in the hospital, I'm zonked out in bed trying to catch some ZZZ's before her next feeding.  My time still seems pretty limited to get things done, but I'm sure it will continue to always be that way with 6 kids:)