Last night in the NICU

The end of the NICU  77 day Marathon

 

 

The night of November 7th I went to the hospital to stay the night in hopes of bringing Kate home the next day (Friday).  It was a bit of a crazy day- I took Josh to a doctor in Springville to get a vasectomy that we had already scheduled a month earlier.  After the procedure was done I took him home and left him on the couch loopy on drugs so I could go be with Kate. 

 

When I had arrived at the hospital they told me Kate had been moved to the B unit.  This is where babies usually go and stay for a few weeks while they learn how to eat.  I thought it was kind of funny that she was moved from the critical care A unit on her last day of staying in the NICU- she didn't even get to sleep in her new B room.  I spent several hours in the B unit going over discharge papers and procedures, getting set up with all the oxygen and monitor supplies, and learning all that I needed to be aware of to take her home.  Around 8 pm Kate and I moved over to the sleep room.  I had to stay one night in the hospital to make sure all was well with knowing how to take care of her.  The room was pretty decent, but a little too quiet and box like.  It was a very long night by myself- I didn't get much sleep.  The next morning we woke early and prepared to leave.  The nurse practitioner, Jenny Smoot, came and did Kate's assessment to discharge her.  She has taken care of Kate a lot and has done such a great job with her!  Jenny and Brenda Smith(Nurse Practitioner) were probably the two over Kate's care that I got to know the most- I loved both of them and still consider them great friends.  I thought it was pretty neat also that I had Karly as her nurse.  Karly was the first nurse Kate had on the day she was born and also the last nurse she had at the NICU.  I loved all the nurses that Kate had, but there were three that I was able to get to know really well.  I will never forget them- I consider them 2nd mothers to my daughter.  They did such an amazing job taking care of Kate and also me- I'm sure I wasn't easy to be around at times as I road the emotional rollercoaster!  As I prepared to go home, I had such an overwhelming feeling of gratitude for the NICU, the people, the journey, and the ending of it!  I felt like a new breathe, a new road, a new chapter was about to open.  I felt like the 77 day journey was finally over- that I had finally finished running the NICU marathon!  Such a peaceful day, such a relief!!  

 

Kennadi had to try out the car seat one last time while I was cleaning it  before it officially became Kates. 

 Nurse- Cami, Occupational Therapist- Annie, and Lactation consultant

 Two of my best friends from high school, Mindy and April, came to visit during the last week of Kate's stay. 

3 of my favorite nurses!!  Kate's Primary Nurses- Cami, Karly, and Becca.

 

The sleep room

 

 

 Kate's new best friends- the oxygen tank and apnea monitor

 The fabulous hospital pump

 

 

Jenny Smoot

Preemie vs. Normal Baby

Although Kate is now close to the age of a typical normal newborn baby, she is still different in many ways.  We took a class in the NICU so that we would know the differences and how best to take care of her.  Preemies still have a lot of developing to do with their bodies that they missed out on in the womb.  She can't be assessed for developmental skills according to her age.  She is just over three months old, but is nowhere near what a three month is.  She is assessed according to what is called her "adjusted age".  Right now she is considered a newborn.  The first week of January she will be 1 month old adjusted age instead of 4 months old and so on.  She will hit milestones like rolling over, sitting, crawling and eating when she's the appropriate adjusted age. 

Preemies brains aren't developed like they need to be.  They are still smooth and not like the typical curved and wrinkled brains.  Because of the lack of development they can not handle multi sensory input such as talking, touching, and looking at you until their brain develops further.

Preemies are very sensitive to touch!  Their neurological system is not quiet developed.  Usually the womb provides firm boundaries for a baby.  Swaddling and bumpers help provide boundaries similar to the womb.  Instead of stroking a preemie, containment touch should be used.  This is a firm pressure touch like placing a hand on their head or stomach.  Light stroking is very irritating to preemies. 

A preemies skull is very moldable, so their head needs to be positioned in different ways to help it grow into a round appealing shape. 

When bathing a preemie it is best to wrap them in a fleece blanket to keep them contained and also help keep their body temperature.  One section of the blanket is removed at a time to clean that area and then the blanket is returned to cover and keep the baby warm. 

Preemies are at a greater risk for infections.  RSV is a huge concern during the winter months.  Preemies should not be taken in public and should be isolated as much as possible. Kate will be receiving a shot each month starting in December called Synergist (sp?).  It is around $1000, but will help protect her from getting RSV. 

Sleep is critically important to preemies.  It is so important because during the REM cycle the growth hormone is released that helps the baby gain weight and brain growth.  They need to get as much uninterrupted sleep as possible.  Imagine trying to keep a house quiet with 5 kids (3 of them being very loud, rambunctious boys and the 2 others are whiny, crying girls!)

Preemies are very sensitive to smells.  Strong perfumes, lotions, laundry detergents, candles, and cooking smells (like onions) can be distressing.  Babies can smell their breastfeeding mom up to 50 feet away.   This has been hard for me to avoid because one of my favorite parts of the holidays is all the Scentsy and candle smells. We also cook a lot of onions- Josh believes all meat should be cooked with onions. 

Preemies sight is very underdeveloped.  This can cause problems, if there nerves don't develop appropriately.  Kate's eyes have been passed off as being completely developed at this point. Sometimes when a preemie is overstimulated their eyes become locked open in a stare.  This is a cue to get rid of all the extra stimulants around.

Feeding a preemie is also different.  Usually a baby has practice time in the womb to drink and swallow amniotic fluid.  Preemies miss out on this, so eating comes as a real feat for them to figure out.  Breathing, sucking, and swallowing are things they have to figure out and coordinate to eat.  It is best to lay the baby on it's side on a pillow and tilt the bottle so the nipple is only half filled with milk.  There are several feeding cues that the baby will show if it is too much for them to handle. 


It is important to understand the stress cues that a preemie may show when they are over stimulated.  Some cues are abnormal heart or respiratory rate, change in skin color, yawning, sneezing, hiccupping, crying, spreading out fingers (splay), straightening arms or legs, or hyper alert- eyes big and arms and legs are frozen.    Kate still shows a lot of these signs.  She most often gets the hiccups.  Almost every feeding time she gets the hiccups either before or after she eats.  If I un-swaddle her to quickly, when I change her diaper, change her clothes, if I move her too much, if the kids are around and it's too noisy or they are moving too much, swaying or rocking, or if I leave her un-swaddled too long- she starts hiccupping.  If she hiccups before I feed her- I have to wait until she stops to get her to eat.  Often times it only takes a minute to shut off the stimulation enough to get her to stop.  If I hold her head up underneath my chin, swaddle her, and hold her tight, she stops the quickest.  She also shows other signs frequently like yawning, tremors, and finger splays or straightening her arms and legs.  Just yesterday I gave Kate the hiccups just by starting to hum a song while holding her.  The best way to stop stress cues is to get rid of all stimulation and do containment touch.  

At first Kate needed to be swaddled when she ate, but now she is more relaxed and can handle having her arms or legs out.   

My Kids

I love my KIDS!

 

 

 My oldest and youngest

(with Grandpa Rasmussen)

13 weeks old

Kate is 38 weeks gestational age and 13 weeks old. I took her into see Dr. Grandpa yesterday and she's doing great.  She now weighs 6.2 lbs. and is 18" long.  She is finally the size of a small newborn:)  Both of my other two girls were born at 38 weeks and were close to 6 1/2 lbs.  So I feel like Kate is right where she should be now. 

Kate still needs oxygen, I've tried her off it a couple times and she does ok except for when she's eating.  She still has a few random apneas about every other day- I'm grateful for the monitors.  She likes to eat every 3 hrs. during the day and still goes longer shifts at night. She is still mostly a  eater/sleeper baby.  BUT she is starting to get spoiled!!  Around 2pm she starts to fuss and wants to be held for the remainder of the evening.  I can't hardly resist holding her either!! I feel like she deserves it after what she's been through and also knowing she's my last baby I want to enjoy every minute of her!

The Amazing Kate the Great

Kate has done wonderful for the last week and a half.  I was so worried about bringing her home- I pretty much was begging the NICU to keep her longer.  I just didn't want her to come home and crash because I don't have the capabilities of taking care of her the way they do.  Overall though- it has been much easier than I thought having her here, but there is always a lingering worry of all the "what ifs". 

The week before I brought her home I spent a lot time at the hospital.  Kate was pretty much a surprise to everyone there that she was going home so early!  They all loved to tell me how she was so amazing because she was an A-typical preemie.  They rarely see preemies born that early that don't have any hiccups (problems or setbacks).  Most preemies have to have surgeries, or have a few different complications, or sicknesses, and even just the rigorous task of eating is a hold up- but Kate seemed to surpass everything.  She is one tough little girl- she is Kate the Great! 

She came home on a trace of oxygen- 1/8th through a nasal cannula.  Her heart echo showed she has a little hole in her heart that is between the two valves. (not the PDA that we were first worried about) It's not much of a concern because it's not causing problems, it's very little and should close on its own.  She'll have to go see a cardiologist for it in about a month.  I took her to a follow-up eye appointment last week at Utah Valley and her eyes have completely developed, so we don't have to worry about ROP anymore.  They did a head ultrasound before she was released and it looked great- no brain bleeds or concerns.  She does have a Hemagioma (sp?) on the top of her head which is not much of a worry either.  It is typical in preemies and from what I understand it is a bunch of red blood cells that have built up and formed a patch.  When she was born-it just looked like a freckle on the top of her head, but now it has grown into a bump that is about the size of a dime.  We just have to watch it for any weird appearances and can take her to a dermatologist if it changes too much.  She might have it for 1 to 2 years and it will most likely get bigger, but then it dissolves on its own.  The kids call it her strawberry.

I think the biggest concerns the NICU had with sending her home was her nutrition.  She wasn't absorbing the protein she needed to grow.  She was consistent at staying on the uphill curve of the 10th percentile in weight and height, but they wanted to keep her on a higher calorie diet.  I was sent home with a months supply of preemie formula because of the protein it would give her and was also given human milk fortifier to increase her calorie intake.  Usually they just send home babies on a formula called Neosure, if they aren't receiving mother's milk.  She will most likely switch over to that in about a month.  Mixing her bottle is still quite the recipe.  We prepare a days worth of milk each evening.  It's a half and half mixture with my milk and the formula. Then we add a packet of fortifier for every 25 mils we make.  When she's ready to eat we dump 2 oz. of that in a bottle and then add one and a half mils of banana for every 10 mils of milk to thicken it and Whalla it's meal time.  She eats 1 oz some of her feedings and other times she'll eat 2 oz.  A lot of it depends on the time span between feedings which is consistently between 3 1/2 to 4 hrs.  At night she's a good girl and will go a stretch of 5 hrs:)  I took her in to see her pediatrician- my dad- a week ago and she had gained weight and length.  She was 5.2 lbs. and 17.5".  I'm anxious to take her in again next week and see what she is- although I really don't want to take her out in public! 

She has pretty much been confined to my room in her bassinet.  That is her bubble.  She's been taken out of the house 2x for doctor appointments.  She usually only leaves my room for bath time, but I have taken her downstairs once while we watched a movie.  Right now it is easy to keep her in my sanitary room, because all she does is eat and sleep.  She's probably only awake for an hour the whole day (like 10 minutes of each feeding and little bit afterward sometimes).   It's also such a pain to take her out of my room because of all the supplies she needs with the oxygen tank and monitor.  This is a good thing for now- I just wish it would get her through the RSV season.  I know soon enough she will be more alert and want to be out and about where all the germs are lurking in my house.  My boys held her for the first time at home last night- they loved it.  Kinnli has held her 2x now because she is home more and always by my side when I'm feeding Kate.  She's always begging to hold her and can't keep her hands off Kate.  She tells me repeatedly all day how much she loves baby Kate:)  Kennadi, my other baby, doesn't quite know what to think.  One minute she is so sweet and soft to Kate.  She tries to touch her so carefully on the foot or top of the head and the next minute she's jealous and tries to rip Kate's toes off.  Often times when I'm feeding Kate I have her on one side and Kennadi is on the other side- she loves to rest her head on my shoulder and cuddle with me to look at Kate.  She gets so excited when Kate squeals.  She runs in the room whenever she hears Kate.  I'm excited for those two to grow up together.  HOPEFULLY- they will be best friends and not arch enemies! 

My Grateful Post

Kate has been home for 12 days now.  Time is definitely flying by a lot faster now that she's home in comparison to when she was in the NICU!  We are loving every minute and I feel like life couldn't get any better!  Having that experience has made me so grateful for so many simple things.  That feeling of always wanting for more or looking towards something in the future has disappeared.  I'm so grateful for each moment of every day and all the blessings that come along with it!

Yesterday felt like one of the best days ever- simply because I was able to just be home and do things that used to be normal for me.  I never thought I'd be so grateful to have the time to clean my house, or so grateful to have the time to spend with my kids to work on homework (both of which I considered dreadful, exhausting, and never-ending before). 

I'm grateful to have two wonderful friends that are teaching preschool for me!  I know my sweet, little people are in great hands.  It has helped to alleviate the worries about bringing home germs to Kate and my anxiety about leaving her.  It has also been absolutely wonderful to take a step back and have time to enjoy her and recoup from that exhausting journey. 

Things that are normal for newborns are things that I appreciate so much about her right now.  I love to be able to do diaper changes, I love to get up and hold her in the middle of the night to feed her, I love to take the time to sit and feed her during the day even when there is much I feel that needs to be done.  I love it so much I get a soar/kinked neck from staring at her for too long:) I am grateful that I get to see her whenever I want!  I love that my kids get to see her whenever they want too- I love that they just can't resist that temptation to give her sweet kisses on the top of her head when they are near her. 
I am grateful for her strength and that I feel like she is thriving at home!  I am grateful for her ear shrieking, high pitched squeal when she is hungry-believe it or not, it is cute.  She sounds just like a cat and she only lets out 2 or 3 squeals to let us know she is hungry.  I am grateful for the oxygen that she is on because it means I get to have the apnea and brady monitor to put my mind at ease that she is ok- I can sleep peacefully.  I constantly want to check on her day and night, but have to remind myself that she is doing good or the monitor would tell me otherwise with its blaring alarm. I am grateful for the consistent NICU feeding schedule she is on-every 3 1/2 to 4 hrs.

 I can't even begin to say how grateful I am for all the service that has been given to us! I am grateful for all my extended family and friends that have helped us!  I'm grateful for the new friends I've made in Nephi because of the service they have given me which brought the opportunity to get to know them better.  I'm grateful for all the new friends I have made through the NICU.  All the emotionally, exhausted mommies that I bonded too because we could relate and support each other.  All the miracle workers- the nurses, nurse practitioners, respiratory therapists, and doctors that I will forever be grateful for their skills, knowledge, friendship and love.  And as crazy as it may sound- I am grateful for the journey we just had-many blessings and lessons learned.  I'm grateful for this miracle baby- for the priesthood blessings, prayers, miracles, and all the tender mercies from my Father in Heaven that brought her home to me!  But most of all I am grateful for my 6 amazing children and a wonderful supportive husband- like I said before- life doesn't get any better than this!! 

Kate's Loved Ones

Please leave your name or a message below in the comment section for Kate's Journal.  I want her to someday know about all the people that have already made a huge impact in her life with all their love, support, and prayers!