"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 11, 2011

Ups and Downs

The NICU is divided into 4 pods.... A, B, C & D.  D is the most critical pod, the one with the youngest and sickest kids.  Baby Katea has been in pod D since she was born.  The nurses told us that the goal was for her to be stable enough to move out of pod D into one of the other pods....with pod B being the preferred one because they are private rooms with a window.  They said the day that happens is a day for celebrating because it's like they're graduating from school.  They told us that it probably would be a couple weeks before Tea would be able to move pods....so we just look forward to the positive updates and count our many blessings for how well she is doing.

I got a call this morning 10/9/11 from the nurse practicioner saying that baby's hematocryt dropped and so she needed a blood transfusion.  This will be the second one since she's been born.  The first time I heard about it, I freaked out and thought something was wrong, but after the nurses explained things to us...my nerves were calmed.  They said that it's normal for these tiny ones to have to go through blood transfusions.  She told us that their little bodies are so small that they don't make blood as quickly as adults, and with all the blood they have to draw from them, sometimes they need to help them replenish it.  They told us that our baby Katea only has about 2oz. of blood in her whole entire body.  So if you can imagine them taking blood daily for testing....it makes sense.  They are all actually really surprised that in the two weeks since she's been born, she's only had to have 1 transfusion.  That's a really good sign.  Today she is getting her second one. 

We got here to the NICU today 10/9/11 and she was laying on her right side with a big IV running blood into a little vein in her foot.  They gave her a little bit of sedation to help her relax during the poking and stuff and she looked so peaceful and so comfortable.  Us, as parents, have free rein to touch her whenever we want.  We can't rub or stroke her skin (the natural thing you want to do with infants) because their nerves aren't completely formed yet and so it's painful for them instead of soothing.  We are just supposed to put our hand on her body, on her head....we can let her little hand hold our fingers...or push on the souls of her feet.  Those types of touches are comforting to her because it's warm and tight like in the uterus.... and it lets her get to know our smell, which comforts her.  I came straight here and pulled the chair up to her incubator and covered her little body with my one hand and put my other hand on the top of her little head.  She was so comfortable.  Then, the nurse walked in to let us know what was going on today.  She let us know about the blood transfusion and her breathing.  They said her goal this week will be to get her to start breathing on her own.  They're going to turn down the ventilator and hope that her lungs will be forced to develop and that she'll start breathing on her own.  They tried that once before when she was only a couple days old because she was doing so well.....but she wasn't ready for that at all, so they put her on another ventilator that breaths for her, but allows her to take her own breaths as well.  Hopefully this time will work and they'll be able to take her off the ventilator and put her on just oxygen.  That's our next goal.  She's simply amazing though and has done incredibly well since she's been born!  The nurse also told us the awesome news that she gets to move pods today!!  She's going to be getting her own room in pod B where she'll be able to grow for the next couple months until she gets to come home.  A room in B came open and she is the most stable baby right now in pod D, so they're moving her.  That was such awesome news for us to get!  We are so excited and we can definitely see the blessings of the priesthood coming to reality through this little girl.  She's amazing!

~~ New Day ~~
Wow, how things have changed.  Today is 10/11/11 and yesterday and today have been BAD DAYS :(  I've been crying a lot....that emotional rollercoaster they told us about is taking me on a downward motion right now, and it's so hard!  It's bad because she's been doing awesome!  She really hasn't had any major problems since she's been born....almost to the point where I thought we were different than anyone else...we were invincible.  We had to be here because she was born so early, but she was going to fly right through it and do fine.  The past two days has been a slap in the face and a eye-opener for me....and has definitely made me humble myself and realize that we are not invincible or different than anyone else...we're on that same rollercoaster as all the other parents in the NICU.  I got a call yesterday morning from the nurse practicioner with not very good news.  My heart drops every time my phone rings and it's the NICU number.  They told us at the beginning that if we don't hear from them, that's good.....it means there are no problems.  When they call us, it's to let us know of changes or things that are happening.  When the phone rang, I jumped up to answer it...the nurse practicioner called to tell us that baby's blood platelet count was extremely low and they found some bacteria in her x-ray. They took some cultures...put it in a peatry dish and they have to watch it to see if anything grows.  The low blood platelet count was a sign of infection in the blood so they started her on antibiotics.  They said that the antibiotics would hopefully stop the infection in her blood and the bacteria they found in her x-ray.  When we visited her yesterday, she was different.  She was not her usual calm self, she was irritated...moving around a lot...her heart-rate was way higher than normal, like in the 175 range (when normally she's in the 140-150 range)  and her oxygen saturation was really low.  I could tell right when I walked in that something was wrong.  My heart broke.  I hate seeing her like that.  They had her on pain medication and sedation to help calm her, but it didn't seem to be working.  She kept making a crying face, but no sounds can come out because of the tubes that are in her throat.  Hardest thing for a mother to have to go through...to sit there and watch their little baby be going through so much...and there's absolutely nothing I could do.  Since it was her 2 week birthday yesterday, they had to change her bed.  That meant I got to hold her again.  They call it skin to skin or kangaroo care....it's where they put her chest directly against my chest and let me hold her for an hour.  I was amazed to see how much me holding her affected her.  She immediately calmed down....her heart rate went back to normal and she was actually highsat'ing which means they had to turn her oxygen down.  I could feel her little body twitching and I just put my hand over her body and she fell asleep.  I fell asleep with her.  I wish that moment didn't have to end.  After the nurse changed out her bed and the hour was up, she came to take her from me.  I wanted to cry so hard when I saw that instantly after they laid her back in her incubator, her heart rate skyrocketed and they had to turn her oxygen back up.  I wish I could just hold her all night, since that makes her feel better.....and me too!!  It was Monday night so we didn't stay at the NICU very long yesterday...we had to come home and have FHE with our other kids, but that honestly was the hardest thing for me yesterday...leaving my poor little baby girl, especially when she's having a bad day.  I must have cried all night last night.  Thankful for Ova for letting me cry when I need to, but always being there to hug or hold me when I need it.

Today I was hoping it would be a better day.  But I woke up crying.  I woke up to my phone ringing....it was the nurse practicioner again.  No good news, only worse news.  She said that the cultures they took from her yesterday grew bacteria, which was not good.  They were going to have to do a spinal tap to take some fluid to test if she has menengitis, which is a brain infection.  I broke down on the phone.  She continued to tell me that they found pneumonia on the x-ray so they were going to continue the antibiotics, and her platelet counts were still low, so they were giving her another blood transfusion today.  Nothing that I wanted to hear.  Her heart rate is still low and her oxygen went way down last night so they had to turn it up a little more than she's needed since she's been born. 

I wish so bad that she was still inside me.  I wish I could have been able to take care of her longer so she doesn't have to fight so hard for her life.  She will barely be 28 weeks this Saturday...only 7 months.  The thing that kills me the most is that she was perfectly fine....she was growing exactly how she was supposed to.....it was my body that was killing her.  Whatever was going on with me, that I had absolutely no control over, was hurting her.  I'm actually amazed at how much I can see the Lord's hands in everything.  As I was talking to the nurse that was bedside by the operating table when I was getting my C-Section....she was telling me that she's amazed that baby Katea is doing so well.  She said once the Dr opened my stomach up it looked like black tar spilled out....just a lot of dark old blood from all the bleeding and clots I had.  She said if baby Tea would have swallowed any of it, or gotten any of it in her lungs, it would have been a whole different story.  But when they did the x-ray, it was completely clear.  That was a huge blessing.  Then she went on to tell me that she couldn't believe how small her umbilical cord was.  She said that it looked like she used every single ounce of it that she could....and that the cord probably would have stopped working within the next coupld days...which meant that if the Dr didn't take her out that day, in a couple more days she wouldn't have made it.  Another huge blessing.  I know that she'll be ok, I know in my heart that she'll be ok....but it's just so hard seeing her little body and watching all the poking and prauding and all the things her little body has to go through.  Even though she's having a couple bad days, I am trying really hard to focus on the fact that she's alive, and she's had 14 good days.  She really is my little miracle, and so much stronger than me.

I know the Lord is mindful of me, my family, and my little baby Katea.  I see the blessings from all the prayers for us.  I see his hand in everything and I am very grateful.  Ova and I pray every night and ask for certain things.  Whatever baby is struggling with, we pray and the Lord makes it happen.  I've noticed that so much more than before.  He's there and he answers our prayers and I'm so grateful for that.  Now I just pray that the antibiotics will kill whatever bacteria or infection she has going on in her little body so she can go back to being herself and having her good days! 


Fred & Shenna Frost said...

Oh Monica, I had tears in my eyes reading the agony in your post. Your family and especially Baby Katea will be in our prayers. Would you please let us know if you need anything? Or if you need someone to watch the olders kids or make your family dinner? I know you have a huge family supporting you guys but know that you have friends here that you can count on as well. All our love to you guys. Ü

Tiff and Kyle said...

Monica, I am so amazed at your strength and courage and faith. You inspire me to be better. I love you so much and you are in my prayers! I know all will be okay. Thank goodness for the gospel and the Comforter at this time.

MARCIA said...

I can't even imagine what you are going through. Your blog makes me love my kids so much more. You, baby Katea and your family are in my thoughts and prayers daily. I agree with Sheena, please let me know if you need anything...anything!


I am here for you Monica whenever you need anything. Remember if you need a break or nap or food, I'm literally down the street from the hospital. I am praying for your family, and especially for your lil miracle!! I have faith in her blessing, and I know everything will be ok. But like you said, it's hard to just sit and watch and feel helpless, I can't even imagine! But I want you to know we are praying for you and we all Love You & Your Family!!

Melissa said...

Wow! She is such a fighter! What a sad thing to see your baby go through so much struggle. I will keep you guys in my prayers. I hope that she will pull through all the infection and that she will bounce back on top again.
I know how you feel. Ups and downs will continue for a very long time but that is when we are most teachable. The Lord knows you and is aware and sees the bigger picture. Hang in there! Love you and we send millions of hugs and kisses!!!!!

shaunita said...

We're still praying for you and your sweet miracle baby. Thank-you for sharing your insights and other things you have gained during this difficult journey.

Lani M. Latu said...

Your blog always makes me soo emotional... your family has such great strength.. and I pray and hope that she will pull through all this. My daughter had to have a spinal tap for meningitis as well when she was born because they thought she had bacteria in her blood. I know she'll pull through STRONG, she already has.. the lord is definitely mindful of you guys right now because you're showing great faith in him. Lots of hugs and kisses to baby katea and your family! :)

The Tauaalo Family said...

Monica you are so strong and have such amazing faith in the Lord! Reading your posts reminds me of what my brother and sister in-law went through when they had their baby girl. She was born at 26 weeks and went through very similar things baby Tea is going through. We were constantly reminded through that experience the the Lord doesn't give us things we cannot handle. I can only imagine the agony you and your entire family goes through daily. Please know your family is in our prayers. Stay strong! Love you guys!!