"Begin today and write in it your goings and comings, your deepest thoughts, your achievements and your failures, your associations and your triumphs, your impressions and your testimonies. I promise you that if you will keep your journals and records, they will indeed be a source of great inspiration to you, each other, your children, your grand-children and others throughout the generations. Remember, the Savior chastised those who failed to record important events." --President Spencer W. Kimball

October 15, 2011

Focusing on the positive!

I had thought for a minute about starting another blog...just to have one be strictly on our baby Katea and her progress and development....but I decided not to do that.  This blog is our family blog, it's what's going on with us in our little family....this is our life.  What is going on with Baby Katea is what's going on in our life right now....so I continue to blog.

Baby Katea finally weighs 2lbs.  Tonight we got to take our boys to visit her (Lautala is not allowed in the NICU because she's too young) we just sat around her isolette staring at her.  My boys are mesmorized by her.  They ask a million questions about what all the beeping and alarms are, and on her stat monitor they want to know what all the numbers mean, and if they were good or not.  They always ask to hold or touch her, but they are not allowed, so they just pull their stools up to her incubator and stare at her.  She's so tiny, but she's actually grown since she's been in there.  I don't really notice the growth because I'm there every single day....but when I look back at pictures from her first week...the measurements show it.  Her head circumfrance has grown 1/2 centimeter, she's grown 1/2 an inch in length...and she now weighs 920 grams, which equals 2lb 1/2oz.  Growing is a very good sign and we were clapping and celebrating during her weigh-in when we saw she gained!  Yay Katea!  She also started sucking....I was changing her diaper and the nurse was holding her head and she started sucking on the nurse's pinky finger.  We were so excited about that, so the nurse went and got a little binki (it was really little, but still almost as big as her little head) and stuck it in her mouth and she immediatly began sucking....so cute!  They don't get the suck, swallow, breathe coordination down until about 34 weeks, but that she started sucking is awesome!

We had a really good talk with the respiratory specialist about life as a NICU parent, and he gave us a lot of good information and helped us put things into perspective.  He told us that we needed to focus on the long term, and not on each specific day.  He said if we focused on each day, we would go crazy.  I can totally agree with him....sometimes I feel like I'm going a little crazy.  This week has been a very trying week for our little girl.  I explained some of the things she's had to go through in my last post...but it has continued from there.  Just today when they did her labs, her platelet count was low again.  This is like 4 days that it's been low, so they decided to give her a platelet transfusion.  They gave her 13ml of platelets.  Whenever they do a transfusion, they stop her feedings because sometimes it can be rough on their little stomachs and so to prevent further problems, they don't feed them that day.  They figured that since they were already stopping her feedings, and her hematocryt was a little low again...they might as well do another blood transfusion, so they also gave her 13ml of blood.  This makes her 4th blood transfusion since she's been born.  When we got there to visit her today she was comfortable and sleeping, and the nurse told us that she had had a good day and despite everything, she was calm.  That's what we liked to hear.  The antibiotics they have been pumping into her little body have been working.  They took a blood culture from her PICC line and thankfully it hasn't grown anything for the past 2 days, so they don't have to take it out!  There is still a little bacteria in her throat, but her chest x-ray looked good and they were confident that the antibiotics they were giving her would clear anything that was still there that shouldn't be.

Yesterday was an extremely scary day.......CODE BLUE (Respiratory failure) NICU room B20.....Kina leka and Tina called us that morning because they wanted to take us out to lunch.  We met them for lunch....it was really the first time we've taken a break since baby was born, and it was nice to take a break.  When we were done eating, we all headed to the hospital...Kina and Tina wanted to see baby Katea....since there can only be 3 people in the room at a time, and 1 has to be a parent...Ova stayed outside while I took Kina and Tina in to see her.  She was sleeping on her left hand side and she had her stylish glasses on because she was under the bili-light.  Her nurse came in and gave me the updates for that day....she told us that baby Katea was having a really good day and it looked like finally everything was calming down.  I asked her if she could take off the glasses for just a minute so Kina and Tina could see her little face and she said yes....she took the glasses off and we all stared at her for a little bit.  A couple minutes later she started squirming around and looked a little uncomfortable....the nurse looked at her diaper and sure enough she had pooped.  It wasn't quite time for her cares yet, but since she needed her diaper changed, we went ahead and did the cares.  Me and Ova get to do the cares when we're there....I love that they let us be as involved as we can!  I got the diaper out and warmed the wipes and changed her diaper.  She just had a small amount of meconium....but any stool is great and means her bowels are working properly...I finished changing her diaper just in time for the respiratory therapist to come in and help reposition her.  Every time they do cares they reposition the way she is laying....they do that to help her little head, so it can be round and not flatter on one side than the other.  They were just rolling her from her left side to her back....all the sudden her respiratory rate plumeted and then her heart rate dropped significantly....then the nurse said, "that's not a good color".....I looked at my baby girl and she was purple, I thought she was dead.  That was probably the scariest moment of my life.  I immediatly started saying a prayer in my head.  I didn't know what to do, I ran to the corner of the room, just watched what was going on and silently started freaking out.  The nurse pushed the emergency button and you could hear over the entire hospital CODE BLUE, NICU room B20...over and over again.  Not even a minute later there were 20 people in the room.  Doctors, nurses, respiratory therapists, pharmacists (with medication that would boost her heart rate if she needed it, which thankfully she didn't)...so many people trying to help my little baby girl.  I was freaking out watching them and I couldn't take it anymore.  I ran out of the room to find Ova.  He was scrubbing in and I ran straight to him and told him to hurry.  I could tell he was worried because he heard the CODE BLUE call and knew B20 was where our daughter was.  He finished scrubbing in and we ran to the room.  We got stopped several times in the hall by really nice nurses who were trying to calm us down and comfort us, and told us that it was ok that we are in the room during everything that was going on.  We got to her room and just stood in the back of the room watching everyone work vigorously to help our little baby.  I couldn't stop crying, Ova was just rubbing my back.  They took out her old respiratory tube and put in a new one.  Immediately after they did that, she stabilized.  I was happy to see on the monitors that her stats were back to normal, but I was still so scared.  They said that when they were repositioning her the tube in her throat must have slipped a little and immediately Katea went into survival mode.  She wanted to protect her little heart, so she stopped breathing, which made her heart rate drop.  Very scary.  Every single person in that room who rushed in to help, stopped and hugged or rubbed my arm or back just trying to comfort me....they sympathized with me and told me they know how scary it is, but that she's in really good hands.  Everyone was extremely kind and sweet.  After things had settled down and baby Katea was ok and sleeping from the pain medication and sedation they gave her....everyone left the room except me and Ova.  I just broke down again.  I really wish I didn't have to see that, but then again I'm glad I did because I was able to see again how quickly everyone responded and get the reassurance that she really is in good hands.  Thankful also that it happened right after Kina and Tina left so they didn't have to witness that.

Like I said before, we had a really good talk with the respiratory specialist.  The conversation started with me asking him how long it took on average for a 25 weeker to be able to get off the vent.  He explained in great detail the difference between adult lungs, infant lungs and preemie lungs....it was a lot of information, but it made perfect sense.  Basically what he told us was that he couldn't give me an answer to that, that all preemies are individuals and they come off the vent when they are ready to come off.  He told me that baby Katea's lungs weren't as strong as he would like them to be, so it could be a while before they're able to extabate (take the breathing tube out), but that we shouldn't worry about it.  He kept saying over and over again that "she's the one driving the bus, we all just have to figure out where she's going and meet her there"..... he told us to focus on the long term, meaning weeks and months, and not on days and hours.  Look at the overall picture.  Then he asked me how she was doing....immediatly I thought about how she almost died, how she's been fighting bacteria and infections in her body for the past couple days....and I wanted to scream BAD, but then he helped me look at the bigger picture and focus on the positives.

1- She's gaining weight
2- Her oxygen is stable
3- Her bowels are working well and she's having plenty wet and dirty diapers
4- She's calm
5- She's growing
6- She's stable
7- She has no brain bleeds
8- The antibiotics are working
9- She started sucking
10- She had 14 good days before these few bad days

He sat there with me and Ova and listed all these good things and helped us to see how well she is doing, despite these little setbacks (which they said are common for preemies born that young)  Then he asked me again...."so how is she doing" and I said "overall she is doing good"  He smiled, said "yes she is" and then left the room.

I really am grateful for the staff in the NICU at the IMC hospital.  Not only do they know their stuff and are excellent at it, but they are caring and compassionate and they take time to help the parent's understand and cope with life in the NICU.  Now we just hope and pray that the bad days are behind us for a while and our sweet baby Katea can go back to having her good days!

Since she's in her own room now, I asked our nurse if we could bring in pictures to hang on her wall.  She said yes and I've brought pictures of our little family to hang on her wall.....the boys have drawn her lots of pictures and written her lots of notes and we've hung them on her wall.  Marie and her kids made a poster for her and that's on her wall as well.  Someday when her vision is good enough to reach the wall, she'll know how much she is loved.  Keep fighting baby girl, we love you so much!

We also finally got her hand and feet prints.  I put them up to a dollar bill just to get perspective on how tiny she is....her hands and feet together measure about a half of a bill.  So cute!

5 comments:

Melissa said...

Wow, I can't imagine what you are going through. Ups and downs for sure. How scary to hear CODE BLUE. I hope that all is better today. yes, looking at things in long term perspective would be better I would think.
Her little room is so cute all decorated. She is soooo loved!

shaunita said...

Wow! I got so tense just reading that post! Be sure to take care of yourself as well so you can be able to give your baby Katea and other kids all they need.

On a lighter note, my husband designed the bili-band Katea's sporting in the picture you posted:)

Fiona and Hoko Tuakoi said...

Your family is continuously in our prayers. We love you guys so much & can't even fathom what you must be going through on a daily basis. You are so strong Monica & I love & admire you so much. Having had to endure Jordan's little stay in the NICU when I had him only gives me a glimpse of what you go through everyday. Our prayers are with you, Ova & the kids.

The Tauaalo Family said...

Monica I truly enjoy reading your updates on babe! Sounds like shes fighting strong. My brother and sister in-law had a baby girl at 26 weeks so everything you have blogged about has brought back those memories. My niece is now 2 years old and going strong, I know your baby girl will do the same! Love you guys and have your sweet family in our prayers.

Tina Tuakoi said...

I catch myself in tears with each of your posts. I can't imagine what you and Ova are going through, but the strength and faith you have is so touching. You two are true examples for us all. Know that we're continually praying for your baby Katea. We love you guys!