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! 

Kate is Home

Kate is Home

 

  
 

Kate came home on November 8th.  I stayed in the hospital Thursday night with her.  She passed all that was required of her and was able to be discharged Friday morning at 11:00 am. 

She is 4.13 lbs. and 16.5".  77 days in the hospital. 11 weeks old or 36 weeks gestational age.

We are beyond excited at our house to have her here.  Her brothers and sisters can't get enough of her- they sneak in my bedroom (her new bubble) and peek at her every chance they get.  Kate came home only needing support from a trace of oxygen.  She's amazing!  I can't believe we finally made it through that part of the journey!! 

Last night of sleep!

No time to write tonight- I'm headed off  to bed to get my last full night of sleep!! (for awhile) 

 Tomorrow night Kate will be sleeping in the same room as me at the hospital and I will bring her home on Friday morning:)  Yippee!!!!

Kate's Coming Home

Kate's Coming Home

 

By the time Sunday finally came I was SO ready to go up and see Kate.  I left Josh home with three sick kids and I drove through a snow storm to get up there.  I had talked to the nurse that morning and she said that Kate was doing good, but that I needed to bring up some clean clothes and fingernail clippers because her nails were getting long.  I thought to myself, "Well, I can handle that- seems like a pretty simple day with not much going on for Kate."  I NEVER would have thought that when I arrived the nurse and doctor would tell me Kate would be coming home sometime this week!  I couldn't believe the news- I couldn't think straight I was so excited (although, thinking straight doesn't happen very often for me anyways).  If I could do a back-flip, I would've done at least 100 of them!   When I told Josh his  first reaction was to say- she can't come home.  He didn't want her coming to our house of infestation.  The doctor told me it would probably be on Wednesday because she was doing so well with her feedings. 

That night after some of my excitement settled, my fear of bringing her home crept in.  With Kam I was begging for him to come home.  He seemed ready to leave the NICU at well over 6 lbs and at 36 weeks.  Kate has taken me by surprise because I've had the mindset that she should be in there for 7 more weeks.  It just seemed like last week I was freaking out about the monitors haunting me!  How am I supposed to take this tiny 4.8 lb. baby home and keep her from crashing??  I almost feel like I might have jinxed her by sending the date that Kam came home (Nov. 9th) out to the universe.  I have to keep telling myself the doctors wouldn't send her home, if they didn't feel like she would do ok.  The thought of taking care of her scares me- I don't feel like I know her well enough.  I need to spend a lot of time with her this week so I can get everything figured out and feel comfortable.  I made it up to be with her for two of her feedings yesterday and she did great.  On Sunday, she was moved from eating on cues to a 12 hr. eating on request.  Eating on cue means that if she wakes up and shows hunger cues within a certain time period they can feed her whatever she will eat from a bottle, and gavage anything she doesn't take.  Moving her to request means she can wake up and eat however much she wants whenever she wants (but there are still volume requirements that if she doesn't meet those for two of her feedings they would gavage her).  She was on a 12 hr. trial of this the first day(Sunday).  Monday she moved to a 24 hr. request feeding.  She had all day again to eat whatever and whenever- but the trick is at the end of the day she has to remain the same weight or gain.  She had a great day with requesting and eating, but she lost 2 grams last night(very minimal).  She was given her vaccinations last night.  She seemed to be more tired from receiving them and didn't eat as well this morning.  But the last 2 feedings today she ate massive amounts- 50 to 60 mils. (around 2 ounces).  When I called to see how she was doing tonight, the nurse had Kate in the bath.  Annie was with her and told me to talk to Kate and they were going to hold the phone to her.  She told me when Kate heard my voice she opened her eyes.  My heart melted because I wasn't able to go see her again today.  Last night was rough.  All three of my boys had the stomach bug- puking and pooping.  I went to bed with a soar throat and a little congestion.  Josh had a terrible sinus infection and Kennadi was miserable from an infection and her flu shot + vaccinations. Kinnli was the only one today without a problem.  So we all stayed home and called it a sick day.  It actually turned out to be a great thing though- because all of us seemed to be on the tail end of being sick.  We worked our sick kids and we all cleaned and sanitized the house to get it ready for Kate.  Although Josh and the kids have done great at keeping the house surface clean, you can only imagine how neglected this poor house has been for 11 weeks!(Socks were even folded, showers were washed, and the garage was cleaned out:)  I feel much better about bringing her home now!  Seems a bit ironic we are all so sick the week she's supposed to come home, but it's probably a good thing because it's better before then after she's here.  We have to wait until at least Thursday to take her home because she still has to get one more set of vaccinations, but I told the nurse practitioner I would be more comfortable if we could bring her home Friday just to give the germs in our house time to die off (and hopefully Kinnli won't get the bug at all)!  Brenda, the nurse practitioner, told me they will keep her until they know she's safe to come home and she's doing great on her feedings.  One of the worries they have are that she's not absorbing or getting enough protein- she's very low.  The protein is a huge factor in her growth.  They had their "Meeting of the Minds" and discussed how to send her home and with what extras to help her grow.  It looks like we will be doing half my milk and half a protein formula.  This will help stretch out my milk for a little longer through the rsv season since I only can pump about 1 ounce per time. 

 My head cold never really turned into much, so I'm looking forward to tomorrow to go up and stay the day with Kate.  I'm slowly starting to get over the fear part and I am getting super excited to bring her home.   I had my mom, sister, and Josh come up for a class that the OT, Annie, teaches.  It helped a lot to know how to handle preemies.  Annie just bragged up Kate and how she was amazing.  My mom asked Annie how often 25 week old preemies go home this soon (at 35-36 weeks).  Annie said she has only seen two other babies that have done as well as Kate in her 22 years working there.  She said Kate is one super smart little girl!  So many prayers have been answered and miracles have been sent our way!

Happy Halloween

Happy Halloween

Kam 2005 in the NICU on Halloween 7  weeks old and 35  weeks gestational age.



 

 

Kate 2013 in the NICU at 10 weeks old and 35 weeks gestational age.

I looked many places to find a Halloween costume for Kate and there weren't many options available.  I even looked online and looked through dog costumes that might work.  Finally, I decided to go look through Kam's memorabilia box and see if I could find what he had worn.  I was so excited to find this little pumpkin outfit.  I thought it was fitting that they both wore it for Halloween in the NICU. 

Kate weighs 4.8 lbs. today.  She has done amazing with her feedings this week!  When I called the NICU on Friday morning to find out how she had done throughout the night- the nurse told me how awesome Kate was and said I had better start preparing for her to come home.  She would be on her way before we knew it!  She said we need to bring the car-seat up to make sure it will work for Kate and it follows the regulations, we also have to sign up for and take the CPR class.  I was so excited we were even having this discussion- I wanted to jump up and down on my bed:)  She should be home by or even before Thanksgiving!!  Yesterday, when the nurse practitioner called she said that she doesn't think Kate has realized she's a preemie- she thinks she can do all that a normal baby does.  She is doing so good on her feedings it's crazy!  Yesterday, Kate woke up and cued for 6 of the 8 feedings and she ate 4 full feedings and 2 half feedings.  Today though- Kate has been pretty tired.  I think she worked so hard yesterday she wore herself out. 

 

(She is required to eat 8 times a day of 38 mils per feeding.)

 

Monday, Oct. 28th: 1pm- 20 mil bottle (1st day) 7% of feedings

Tuesday: 1pm- 20 mil, 7pm-11 mil  10% of feedings

Wednesday: 7am-20 mil, 4pm-40 mil, 10pm-20 mil  26% of feedings 

Thursday: 1am-26 mil, 10am-20 mil, 1pm-27 mil, 7pm-32 mil, 10pm-20 mil  41% of feedings

Friday: 4am-20 mil, 7am-44 mil, 10am-40 mil, 1pm-38 mil, 4pm-34 mil, 7pm-17 mil  63% of feedings 

 

----I'm may or may not be a little obsessed with numbers.----

 

On Kate's first feeding on last Monday, one of the OTs-Annie, recommended putting 1 mil bananas for every 10 mil of milk to thicken the milk.  This slows down the flow so that Kate has time to process the suck, swallow, and breathe.  It really made a difference to do that.  Tonight Annie recommended to change it to 2 mil/10 mil of milk.  This is what they did for the 7pm feeding that she took 22 mils for.  The earlier feedings she only took small amounts before she started showing signs of stress.  She was drooling a lot and her respiratory rate jumped to the 80/90s.  When she shows stopping cues they stop the feeding and gavage feed her.  The nurse felt like thickening the milk with the banana just a bit more helped her to pace better and slow the work load down. 
 

Kennadi came down with the tummy flu and woke up puking on Halloween (Thursday).  We spent the day together.  I didn't dare go see Kate on Friday, because I didn't know if I was contagious and would pass it on to Kate.  I'm glad I didn't though because I woke up sick this morning with it.  Today was Kam's baptism so all the family came.  It was a great day- and I felt good after the morning hours, but still couldn't go see Kate.  My mom, and sister- in-laws went to visit her.  3 days- too long, I can't wait to go see her tomorrow as long as I'm feeling good!  crossing my fingers and toes.....