Day 32 3.0 pounds--Sick little girl

This day was a tough, long, physically painful, emotionally exhausting journey for Gracie and me. She was showing many signs for a condition know in the NICU as Necrotizing Enterocolitis or NEC. Here is a great site for more information. http://preemies.about.com/od/preemiehealthproblems/f/nec.htm

Sick little Gracie...white stuff by her eye is an antibiotic for
her eye infection

When you have a micro-preemie in the NICU, every healthy day is all you live for. It is very difficult to plan any future as each day is so uncertain. Any little infection is very serious for these little ones because of lacking an immune system. A little cold or cough to us can send them into a serious battle for their lives. I'm so thankful for the team of doctors and nurses at Kadlec Hospital. They, with their expertise, were able to see early, yet very distinguishable signs of this horrible disease. Heavenly Fathers' hand has been seen in every area of Gracie's life. 


When I called in to see how Gracie's night went, instead of talking to her nurse, they said Doctor Z needed to talk to me. That was unsettling in and of itself. I've never talked to a doctor on the phone regarding Grace in the NICU. She said she had been sitting by Grace for a while and had ordered a slew of things to help her. Her belly was distended more than normal (she is my little frog belly baby) so I new if it was more than normal she must have been pretty big. She had visual belly loops meaning you could see her intestines bulging on her belly. The blood veins are also much more visual. 

The red light is her oxygen sensor and her little white blood
pressure cuff 

She was having quite a few Apnea and Brady events and Desatting more than normal (she is also known as a Desat baby but not the A's and B's). She was quite a bit more lethargic and not awake nearly as much as she has been. When I changed her diaper she just had floppy legs. That is not little Grace...she usually stretches.

Nasal Cannula for her air pressure to her lungs and oxygen.
Repogle tube in mouth for sucking out anything in her
stomach.

 She was more pale than normal. She had a positive result on a Guiac stool test. She was retaining fluid. She had green residuals when they pulled the milk out of her tummy to check for air and digestion. Doctor Z ordered 2 x-rays in the morning, one in the evening and one for Saturday morning. One came back suspicious. The next looked better but it was at a different angle. This isn't what you like to hear from a doctor "it looks suspicious or questionable". She ordered two anti-biotics for her intestines called Vancomycin and Claforan. They are continuing checking her stools for blood as that can mean there might be an early perforation of the bowel. She started Lasix which is a diuretic medication to keep her insides "dry" because she was retaining fluids. Her feeding tube was taken out of her nose, because her feeds were stopped, and now she has a new IV in her hand to administer her TPN (Total Parenteral Nutrition) and Lipids (fats).

Her IV in her tiny hand

 Another larger tube called a Repogle, replaced the feeding one, going into her mouth and down to her stomach which was hooked up to a low intermittent suction machine. This is done to keep all secretions out of her stomach and keep it dry. She will have hunger pangs. 

The Repogle tube in Grace's mouth for suctioning out her
stomach

She then received her second IV in her foot (after 2 attempts were made in her hand) for the antibiotics, Lasix, then later they flushed it and gave her a blood transfusion. This time she had a new donor as her blood from her first donor was left in Seattle at Swedish. They didn't have enough time and something else was wrong, so they just used new blood here. They had to draw my blood and hers to cross match for getting the right donor for her. She had to have a stiff "board" (even though it is soft, that is what they called it) put on her leg and foot area to keep the ankle from moving as that would kink off the IV tubing in her vein.

One foot has bandages from many blood tests and other foot
had the IV for her blood transfusion and anit-biotics

 This did happen and so her dear nurse detached the tubing and blood went all over that part of the bed, her leg, foot and diaper areas. It turned out that it was the machine having the problem, not the IV. Then Nurse Susan, after cleaning it up, was changing Grace's diaper because it also had blood on it and Grace decided to poop all over. Poor nurse, she had such a time with her. After new bedding, diaper and blood transfusion going, Grace was able to rest as did Nurse Susan. I think I'll have to get her a chocolate bar. :) Chocolate fixes all sorts of things...including blood and poop, right? We both love Nurse Susan.


Nurse Mary was her night nurse. 

Nurse Mary with Gracie in the evening, all of her tubes and
wires are wrapped up with her

We also had the privilege of having several visitors come by and make my day brighter. Hannah took the day off of work and stuck by my side, sometimes even with laughter. Even Brandon, her husband, came for dinner and stayed long into the night...like midnight. Katie, Hannah's friend, came to bless us with her presence too. And yes, yet another friend came, dear Missy S., and sat by my side with conversation and love. Cassandra came from our church but it was during a stressful, emotional time with IV's not working and holding Grace's leg while she received an IV in her leg. That was painful for Grace. I don't hear her cry barely at all...she is such a trooper...but this time, it was more than she could bear. So sorry, Cassandra, to have to turn away a visitor.
I let Grace rest all day until evening then I just had to hold her. She had gone through so much, she needed to feel "loving touches" instead of poking and prodding. It wasn't very long before she started gagging on the Repogle tube going down her throat. Poor baby.

I think I got everything...believe me it was a lot to handle all in a 15 hour period. Time will tell if everything works for Gracie. We should know over the next couple of days. 

Here are some pictures of poor Gracie...most people don't get to see things like this. She is fighting hard and is yes, still my hero. Fight Gracie, fight...life's worth it! Hang in there sweet little angel of mine!

Good night little Gracie...snuggle with bunny

Please pray for Gracie!!

Please pray for Gracie. This is one of those scary days they warned me of. The doctor is suspicious of a part of her right side of her intestine which appears to have air in the intestinal wall. Otherwise known as NEC. They watch that because it can perforate her bowel. She might need a blood transfusion today, has had 2 x-rays, stopped all feeds, back on an IV, and will be put on antibiotics. She is pale but the doctor said she has always looked a little pale to her since her arrival last Friday. Please pray it isn't NEC. That can be deadly.
The good things are that she is alert, great sucking on her pacifier, not lethargic, coloring could be better but that may be related to being anemic and needing a blood transfusion, no perforated bowel.

I'm heading back to the hospital for the remainder of the day. Please pray!

Day 31 2.15 pounds

Blood cell shots, Human Milk Fortifier (HMF), Iron, fluid retention and Yeast Infection


Big day, huh? Poor baby she has had a lot of things going into her today, and they want to add to that....drum roll please...immunizations!! I passed on those right now. If something doesn't go well, I want to know it wasn't the immunizations. 
She'll probably be put on a diuretic medication for her fluids. She gained 3 ounces in one day...not possible with only good weight gain.
This is her first day with the Human Milk Fortifier which was overnighted to the NICU. Like I posted yesterday, it is real human breast milk with all the extra nutrients, vitamins and sugars micro-preemies and early preemies need to grow and not have problems with bones, growth and brain development in the future. (Whew, that is a long sentence)  Usually this HMF's first ingredient is cow's milk but not this one. They think Gracie may have a reaction to the cow's milk so we are going the safe route. She is doing well on it, so far. 
Yeast infection in her diaper area...bum, bum, bummer. This is her second infection in the past 6 days. I sure hope this Nystatin cream works. Maybe I should have bought some of that Boudreaux's Butt Paste. Hmmm...anyone ever use that funny name diaper cream? My thought...How does a little tiny bum get an infection? I mean, it is literally 1 1/2 inches wide! Crazy. No I didn't measure...LOL.

She didn't seem to mind the shot to kick her body into making it's own blood cells. She has to have those every Monday, Wednesday and Friday.

She started Iron drops as she is anemic. Funny, this morning, the other nurse voiced how she wanted to take care of Gracie and Gracie's nurse said, "you snooze, you lose." At this NICU whoever gets here early gets their choice of babies to take care of. It was funny to hear this conversation between two nurses who have both had Gracie in the past 48 hours. They say she is one of the easiest babies in that side of the NICU. She doesn't really ever cry. She smiles a lot though. But when she does cry it is for one breath worth and you can't really hear it. I think the nerve from her vocal cords is still stretched from heart surgery. They said that happens and she will be hoarse. I think it is a very cute sound. She is just one content baby girl.

This afternoon I fell asleep with Gracie during kangaroo care and John snapped a picture of us sleeping...great...he better not post it. LOL

Did my first day of school for Emily and Lauren. Joseph was actually a part of it too. He had
 fun. Big sister Katie was taking pictures...guess I need to give her more book work? Maybe I'll just call it photography class time.
Big sister, Lauren, is getting glasses since she sort of flunked her eye exam. She'll be a cute one in glasses. She is so excited to pick out pink ones. 
Anyway, I spent all evening with little Gracie and got her dressed for just a regular holding time, not kangaroo care. She didn't desat at all when I held her upright. Hmm...I wonder if she has tummy problems. That can cause desats. As soon as I tucked her back into bed before heading home, she started desating again. I'll ask the doctor tomorrow. No Brady's or Apnea today though. This is cause for celebration!

Day 30 2.12 pounds HAPPY 1 MONTH BIRTHDAY GRACE

    Happy, Happy One Month Birthday, Gracie!!
              MY, HAVE YOU GROWN!

2.12 pounds

Today has been a big day for little Gracie. You hit one month old today. Wow, the time has flown in one sense and in another it seems like you have always been here. My emotions are high today as I think about everything that has happened in the past month plus. At just 25.5 weeks gestation, I remember laying in the hospital for just under two weeks being uncertain each day if that would be the day they would take you. Many days, the contractions got as close at half a minute apart and I became "toxic" to the high levels of Magnesium Sulfate. It was difficult to stop them. Unfortunately, medication couldn't stop them on the 14th of August, even after many high level boluses of Mag. The fight was over. Worry overcame me as I was wheeled to the operating room for an urgent C-Section. Thirteen weeks early was just too early for a comfort level in me. The doctors didn't know what would happen, both with me and you. Accreta was a huge concern of theirs for me and prematurity and lung issues were the concerns for you. Gracie, you let the whole room, which was filled with about 14 people, know you were worth fighting for. Crying immediately filled the room just half an hour after they told me you would needed to be born, at 27.4 weeks gestation, for our safety. You started life out so tiny...just 2 pounds 4 ounces. This started the new journey of smiles and tears, love and God's tender mercies. 


                        First Day

2.4 pounds

                        One week

1.14 pounds

                        Two weeks

2.0 pounds

                        Three weeks

2.8 pounds after heart surgery

                       Four weeks

2.14 pounds

                      One month birthday

After her bath with no leads or tubes...her first
"big girl" picture. 2.12 pounds

Today, the doctors decided to try a human milk fortifier (which is usually milk based and adds 4 calories along with all the vitamins, minerals, sugars, etc. to breastmilk) but the kind they want to try is actually human milk, not cow's milk, and has added vitamins, minerals, glucose, calcium and lots of other yummy things. At first, I was thinking, gross...someone else's milk is going to be in my baby? But then I thought, well...I guess a cow's milk isn't very good for Gracie, seeing she isn't a calf. LOL Gracie is the first baby in this NICU to actually be on this additive to my milk. The reason?? To be more comfortable with avoiding possible problems related to milk allergies like Daddy had. Grace doesn't need any added problems, so we are going to avoid them all together. Sounds great to me. This additive will be shipped overnight so she will start getting it tomorrow, Wednesday. The nurses had a little meeting on how it is to be thawed and added to my milk. So, in a way, Gracie is their guinea pig only in the sense of a new product for this hospital. It has been widely used in other hospitals. They say it doesn't have any problems being digested and thus prevents possible problems with her GI track. Yay! 
Gracie is anemic today and instead of doing yet another blood transfusion, they are giving her shots to help her start making her own blood cells. Three times a week she'll get those until she isn't anemic anymore. Her levels are at a 23 but they don't want her to go down any more. At surgery, she was at a 32 and they wanted her to be at a 40, even with a transfusion she didn't make that.

Day 27, 28 & 29 (weekend) all at 2.14 pounds HUGE changes

                      Protocol vs. Proactive

I've combined these three days together because as it was going, well, let's just say I was getting further and further behind in blogging. I need to catch up so you can have information more up to date, not to mention that these three days were pretty much the same. Perfect opportunity. 

Amazing things happened starting less than 12 hours after Grace arrived at Kadlec. They tested Gracie on many things all at once. She arrived being on oxygen because of coming over the Cascade Mountain Range, so they discontinued that along with many other things. Go Gracie Go! Prove what you can do! You are a very strong little girl with a lot of spunk! Show everyone how incredible you truly are!

                                          Gracie with NO CPAP

Grace loved not having anything on her face so much she
snuggled into her bed roll. Her heart surgery bandage is
gone but the steri-strips are still there.

                            

                  Gracie with NO oxygen

Size comparison picture plus she loves to have a hand over her

 Gracie with NO Nasal Cannula

Gracie all snuggled in a cloth diaper as her "blankie"

                     Gracie at full feeds

Tummy time...aahhhh

                   Gracie with no PIC line

Gracie's arm is finally free of an IV PIC line...after 4 weeks!

Saturday, the nurse was so excited and said, "Come look at Gracie and tell me what is different". So I headed over and immediately I saw the CPAP gone off of her face and the machine was also gone. She graduated!! She had nothing on her face at all. We were told at Swedish, since she had just graduated from the ventilator, she would be on CPAP for quite a while. Wow, that was fast! New hospital, new rules. It is an adjustment. No oxygen, no velcro or stickers at all. No breathing apparatuses. She was also freshly bathed and the nurse even took pictures and printed them out. (I will post those later, the card is at the hospital) How awesome is that? She has wonderful nurses here...just like at Swedish. This alone has made the transfer easier. I think when people go to nursing school, they test their hearts for love...if they score low, they go somewhere else, because all these nurses have huge hearts and celebrate each milestone with Gracie & me.

At the rate she was dropping things, I was waiting for the "1 step back" that all micro-preemie parents are warned of. So far, she hasn't stepped too far back. Later on Saturday, after nearly 14 hours off everything, she was put back on the nasal cannula with only 1.5%-2% air flow to keep her lungs just a little inflated. She only needs oxygen when lying on her back or sides, not when she lies on her tummy, which is her favorite position. 

Another tummy time with her favorite pillow given to her
at Swedish (good thing we brought it, they don't have
them at Kadlec...but now they want to order some)
*smiles for all the babies in the future who will recieve them
due to Gracie bringing hers*

She is doing exceptionally well. She stayed at 2 pounds 14 ounces all three days. She was losing fluids at the same rate as she was gaining. Gosh, I wish I could do that...hehe. She had goopy eyes so they took a culture and started eye drop antibiotics. I was concerned about this at Swedish but they said it was normal eye discharge...mommy feeling like it wasn't. We'll see. Sunday it turned out to be Conjunctivitis, a pink eye type virus. They jumped all over that one. She is in isolation, in her isolette...funny huh? I thought she was in a sort of isolation anyway, isn't that what the isolette is? Well, they wear gloves and robes so not to pass it on to another baby. Good thinking.

Grace's isolation isolation LOL

Smiles are all over the place...on me and especially Grace. We are a happy team. Again, she is my hero...she goes through all sorts of painful or uncomfortable treatments and she still smiles...

Gracie got two great surprises over the weekend, outside of immediate family visiting, she had two very special people come to see her. My best friends' mom, Jan F. (she is like a grandma to my kids) & Susan B. (she is someone I look up to because of her encouragement and love she exemplifies to all the women in our church). What a great time we had visiting.

Cute matching outfits and ooohhhh so soft socks...also the
plush doll in Grace's isolette in the following pictures...
Thanks Jan!

Jumpin' Jan (I bestow upon your head jumpin' energy, you are
in our prayers) We
all *heart* Jan

Sweet Spirit Susan B.

Hey, Gracie...Bunny and dolly want to play...can you pleeezzz wake up so we can? 

Gracie was in clothing on Monday for the first time. Aawww, she was so cute...she actually looked more like a baby. So great to see that. The shirt size was so tiny. Tag said 1-3 pounds. 

   Some more fun pictures...from the weekend...

Sweet baby heads...gotta love them!

Showing some of the fluid retention in her cheeks and
snuggled like she used to be at Swedish. They don't do the
same types of things here so I did it for Gracie.

Teeny fingers searching for her mouth

Every time I would come back after going home at night, something would be different. I am always excited to come back, partially to see what has changed. They always surprise me.

Day 26 2.14 pounds MOVING DAY

(This is Friday's posting...still a few days behind in posting...sorry)

The day has come to move to Richland's Kadlec Hospital. I was so amazed at how smooth everything went once the ambulance team arrived. I got to the Swedish hospital at about 8 A.M. to be there when the team arrived. I changed little Gracie's diaper, helped pack her belongings, (yes she had a bit), checked her temperature, snuggled with her a little and waited. And waited. Then the phone rang. Hmmm...should I answer it? It was the ambulance team. They'll be a little late. Like 11 A.M. Ok, that'll work. I can do a few things. Like saying "goodbye" to the nurses, Dr's, the case worker Jackie, many families I got the privilege to meet, and the nurse practitioners I grew so fond of. Many weren't there but for those who were working that morning it was bitter-sweet. What was my problem? I had so looked forward to this day and then that morning it just turned so bitter. I realized I was going alone...none of them were coming with. They were my NICU family. I have grown to love them dearly. They took such good care of my little Gracie and me. They were there on the good days and the bad days. They comforted me through one of the roughest times with Grace's heart surgery. They hugged and cried with me when my friends baby passed away. They were there to answer SO many questions. They LOVED my daughter and showed it. The bitter had come but the ambulance team had to leave so thankfully they pulled me along with them. The strings were severed and we started the trek home. Goodbye Swedish...Thank you for touching my daughter's heart in many ways and mine. You are great!
      
 Moving day countdown
...TEN...
LEAVING SWEDISH HOSPITAL
                                        

Ambulance team arrived with travel
isolette...check out the machines!

This is her home for the next 5 hours

Starting all the machines and setting
levels

The final minutes of being in Swedish's NICU bed

Getting transferred to the travel isolette...it was very tiny

Getting settled 

Gracie getting her "seat belt" snapped on

This was such a massive machine on
wheels. Monitors above, below and on
each end. Grace is surrounded.

Gracie on her new travelling CPAP

Her first sunshine outside

This unit is so heavy they use a lift

I love this license plate

This is one of their largest ambulances,
you can even stand up inside with room
to spare

Leaving Swedish in Seattle

...NINE...
LEAVING THE CITY OF SEATTLE

This is the harbor I've been looking at for the past 4 1/2 weeks

The first sign for the road we need to take to get home

The water in between the highway shows how it is a "floating
bridge"

The floating bridge

Shows the beautiful green trees outside of Seattle

...EIGHT...
GOING OVER THE CASCADES

Heading over the Cascade Mountain range

Gracie needing a little oxygen coming over the Cascade's

...SEVEN...
THE SOUTH EAST SIDE OF WASHINGTON

The vast changes of scenery on the East side of the Cascades

Mount Rainier under all the clouds

Mount Adams in the very center all snow capped

...SIX...74 MILES

Richland...74 miles 

Potty break at McD's...thought this was a cool pic with Grace's
ambulance in the reflection on the window

...FIVE...31 MILES TO RICHLAND

Richland...31 miles

...FOUR...CLOSER YET

Richland...can't see the miles...but is closer...(smiles)

This mountain looked like sand dunes because it was so
smooth and tan colored. Didn't come out well.

...THREE...STARTING TO GET EXCITED

Richland...16 miles...I think

We are getting close...Grape vineyards everywhere

The sky was solid blue, not a cloud anywhere...makes seeing
airplanes an easy task

...TWO...I SEE OUR CITY

First sign for a hospital...could it be, were we getting close??
Oh yeah!!

Kadlec Hospital...finally! What a great sight!

Unloading Grace at Kadlec

The ambulance entrance was completely at the other end of
the hospital as the NICU. We joked that we should leave
a trail of bread crumbs for the ambulance team to find their
ambulance again.

Just arriving at the NICU. Grace is still in her travelling bed.

...ONE...WE'RE HOME...

Kadlec's team getting all her vitals

Grace feeling out her new headgear with another new CPAP
machine. Third one she has been on, each with different
headgear.

After 4 hours, she gets a break from her headgear. Time to
wake up Gracie! What a big yawn.

Look at her huge "frog belly". Full of air from the CPAP and
not pooping. Looks like she ate a huge Thanksgiving meal, huh?

Gracie getting all comfy after they pulled the air out of her
tum tum.

Just waking up during her next break from CPAP...she loves
mommy's voice. Catch that CUTE and very contagious smile.

She loves her pacifier
 (her nose has a covering over it so the
CPAP nasal piece doesn't actually touch her nose. Helps prevent
sores) 

When I came home, this is what I saw...Thanks! What a great
thing to see after 6 weeks away from home. Our long haul in
Seattle is over. Now the other stage of growth begins! Here
at home and at Kadlec for Gracie.