Recovery

Dear Annie,

It has definitely been a week of recovery for you. You definitely have been pretty sedated for the most part. And with that, you haven't been doing much breathing on your own, which I totally understand. I'm just hoping that once you are fully recovered, and off the meds, you will begin to start breathing again. You haven't been having as frequent of episodes which is great! You have been having around 3-7 each day. But we aren't sure if it's because you are more sedated. Last week after your surgery, you were starting to swell up pretty bad and your poor little head was so so swollen:( They gave you this medicine called "Lasiks" to help and it definitely helped!

Prettiest little girl I ever did see!

Obsessed with your cute little feet! I just want to kiss them all the time!!

Last week when they put the trach in, the doctors told us after that your jaw is so clenched down that they probably wouldn't be able to even put a breathing tube down your throat anymore because they wouldn't be able to get it in your mouth. I started thinking and getting a little worried about that and about when you start teething; how badly that would hurt if you were clenched down so hard that you would start bleeding with your teeth digging in your gums. I shared my concern with the Nurse and Doctors and asked if Botox may be an option. They hadn't thought about that yet. But as the started thinking about it, they thought it would be a good idea to consider.

As you now have your Trach and G-tube for a week, they did the first trach change today. I got a phone call this morning at 7:30 and it was the ENT Doctor telling me that the trach change went well except for one thing... you have super bad skin breakdown on your poor neck. He said it was pretty bad and that they were going to get the wound Doctors to take a look at it to see what they though we should do. We were expecting you to have a little skin break down because your sweet little neck is so small. But when I got to the hospital today, the Doctor began to talk to me about it and actually showed me pictures of it. I began to cry. I honestly didn't expect the skin breakdown to be that bad. You have one on each side of your neck. Both are 1cm deep, and about an inch to an inch and a half wide. Oh Annie, I am so sorry. There have been so many darn things that you have had to bare and as those sores look so painful, I wish that I could take that pain away from you. The doctor assured me that they would give you pain medicine for it and that the wound doctors would be able to heal it, but it would take time.

You know how I told you about the Botox? Yeah, they injected you with it in your sweet little cheeks today. I made SURE that they put numbing creme on you before. I don't want you to think of life as pokes and I.V's. So whenever they can give you numbing creme, I assure them that they HAVE to use it! You did SUPER well with the Botox! Pretty sure you are probably one of the youngest person to have botox injected in you! I sure do hope and pray it helps your little muscles relax! This was more of a trial run this time to see if it helps/works. And if it does, we will get the Ocupational Therapist involved to see what muscles we could put it in to help you relax more.

Countless little pricks on both of your heels to get blood :( Saddest thing..

Annie, I hope that you aren't feeling any pain. I can't handle thinking of you being in pain. It has definitely been a rough journey in life for you so far. With heal pricks countless times each week, shots, I.V.'s, suctioning out your nose and mouth several times an hour, and having episodes of not being able to breathe... you are such a fighter! You are so brave! I honestly don't know anyone who is as brave as you! And you know what? You are SUCH an example to me! You told your Heavenly Father that you would accept this body! You just wanted to come down here to earth to receive a body. And you did! Your example, even though it's different than an example someone could be for going on a mission, making someone cookies, or being the Relief Society President, it is the example that SO many of us need! You're calling in life I know, is to wake people up! I know you are trying to tell people to repent and be the best you can be so we can all live with our family and friends forever. You probably know the plan of salvation better than all of us! And how grateful everyone is for that example you are! So thank you Annie. Thank you for being so amazing. You are such a blessing. You are such a fighter. You are someone everyone remembers in their prayers. From age 2, to age 100... We are all praying for you Sweet Annie! You have brought your dad and I so much happiness and so much closer to our Heavenly Father. And I know many others. You sleep well Annie Lynn. Mommy will see you tomorrow. And I will be telling you the story, "Little Red Riding Hood". I've been telling you stories the past two days and you LOVE IT. I know it because you just stare into my eyes and listen to my voice. I tell you all of the stories that my dad told me when I was little. Yesterday was "Jack and the Beanstalk", today was "Goldie Locks and the Three Bears", and tomorrow will be "Little Red Riding Hood"! So be ready! :) I love you so much Annie-Buds! Sleep tight, don't let the bed bugs bite!

Love,

Mommy

Sleeping Beauty!

Holding Daddys's hand :)

Surgery - Tracheostomy & G-Tube

Dear Annie Girl-

Well... You have a Trach and G-tube now! Oh how emotional and nervous I was yesterday! Your dad and I got up to the hospital at 7:30 yesterday morning and got you all situated before they took you down to the operating room at 8:30. When it was time to take you down, I broke down. I was so nervous thinking thinking the worst possible things that could happen-not a good idea. Your dad reassured me that we knew this was the right thing. We had prayed to our Heavenly Father and knew/felt it was right. I got a feeling of comfort and agreed with your dad.

When we got down to the outside of the operating room, I had to sign wavers and giving the doctors permission to put you under using Endotracheal Anesthesia, and operating on you. As we said bye to you I whispered in your ear and told you how much I loved you and I knew this was the right thing. I told you to FIGHT as hard as you could! I sobbed and sobbed when they rolled you away. It was as if I'd never see you again. But I knew the next time I'd see you, I'd get to see your beautiful face fully for the first time. 

As your dad and I waited in the waiting room, I kept looking at the clock. They said the surgery would only take 45 minutes to an hour and it was past an hour. Finally, the Doctor that did your trach came in and sat down. He said the trach was finished but that it was the hardest Tracheostomy he'd ever done. He said that because your neck is so small, your sound box and wind pipe weren't where they technically were supposed to be so he had to pull up your sound box to get the trach placed in the right spot. As he told me this I about pooped my pants! Okay, not really... But that made me scared! I sure was glad that it worked! They usually wait three days post surgery to change out the trach, but they are going to wait one week because they don't want anything moving or anything because it was such a hard tracheostomy. They then put in your G-tube and that took another 45 minutes. The doctor came in and said it went extremely well and he didn't have any trouble doing it.

Your dad and I then headed back up to the NICU to meet you in your room. We had to wait fifteen minutes before we could see you because they had to get you situated back in your room. I was DYING to see you! When they told us we could see you, your dad and I quickly washed our hands and hurried into your room. Holy cow Annie... you were GORGEOUS! How beautiful of a daughter I have! It was so crazy to FINALLY see your sweet little face! You looked absolutely stunning. You still were under anesthesia so you weren't very responsive but I sure could feel your sweet little spirit! Your body was quite swollen because of all of the I.V. fluid and you usually swell post surgery. But how emotional I was. It was almost as if I was seeing you for the first time. Your dad and I kept saying how much more mature you looked with out all of the tape over your face! Goodness... you just look so sweet, cute, and beautiful! You sure do look a heck of a lot like your dad! You have my nose and my big fat lips but everything else, your all your dad! You are just the gosh darn cutest thing!

My Gorgeous Annie Girl:)

Your Face!!! :) :) <3 I'm in love!

You know that Mother's Day giveaway I won off Small Fry Blog? Well... We decided to use it last night so we could be down the street from you at the Grand America Hotel and it was so nice! I loved that I got to see you three times yesterday! It was so nice and I was so happy to be with you so much yesterday and today! I wish we lived closer to you! But I'm so thankful that we still live close. Annie, I hope you know that you are in one of the best children's hospitals in the country. I am so blessed to live in Utah where I know that you're in some of the best Doctors in the world. I don't know how parents live in a different state than their babies. There is no way I'd be able to do that. I was so happy I got to spend the night ten minutes away from you last night. It was such a treat!

When we went back up to the hospital last night, your heart rate was up to 170 when it should be at around 140. I knew that you were in pain. They were a little behind on giving you your pain medicine and my heart just ached thinking that you were in pain. You also hadn't peed since 6 a.m. They put a catheter in you and oh how I cried when I saw all of the urine come out. Your poor little bladder was so full no wonder you were in pain! I felt so bad. The nurse said they would be keeping the catheter in for a few days because you were swollen from surgery. I felt so bad that you were in pain. Once they got the catheter in and your medicine, your heart rate finally started going down. Apparently you had a great night last night and you've had a good day. You have had one episode for the day which is great! We're thinking that it could be because of all of the medicine you're on, but I'm still hoping/thinking/praying that you are just more comfortable with that trach and these episodes will slowly but surely go away. You looked GREAT today! You weren't as swollen which I was so happy about and you looked SO relaxed. Your heart rate was at 140 which I was happy about. They did boost up your ventilator a little because you weren't breathing as much. We were expecting that though because of all that you been through. But you looked great and seemed much more comfortable today. 

Annie, I love you so so much! I'm so glad that the surgery went well! And I am just hoping and praying that your recovery goes by and fast and that you're not in pain. So many people have been praying for you. People that your mommy and daddy don't even know are praying for you and we are so grateful to all of these people that are praying for you. People that don't even pray have personally written me telling me that they don't pray often, but they are taking the time to pray for you. How grateful I am for all of the prayers people have been giving for you sweetheart. Keep fighting!! I sure do know how much of a fighter you are! You are the toughest little girl I have ever known! Mommy loves you and know that the Lord knows what he is doing. He loves you, he feels your pain, and he's always with you Annie. Please never forget that. Sleep well my little one!

Love,

Mommy

You and dad:)

My favorite little girl!!

My little Munchkin all mature!

Ah! Look at that face!!! :) :)

In love with you!! <3

I could see Primary Children's Hospital from our room! Oh how I loved it!

yipee! I'm sleeping close to you tonight Annie! <3

Surgery Tomorrow!!

Dear Annie,

Well tomorrow is the day!! You will be getting a tracheostomy and a G-Tube and I am FREAKING OUT!! Oh how nervous I am! I have been so nervous all day! I know that this is the next step for you and I feel that it is the right decision but I still am so nervous. It's because I love you so much Annie. I want you to be safe, I want you to be okay and healthy. I pray that the surgery will go smoothly and that everything will turn out well. And boy do I have FAITH! I know that everything will be okay. I sure am keeping you in my heart and mind right now! (Well I guess I always do... but for sure right now!) They will be doing your surgery at 8:30am and say it is about a 45 minute-1 hour procedure. All I know is that will be the longest hour of my life. I wish I could go in there and hold your little hand... Wow... I am crying right now just typing this. I don't know if I'm going to get any sleep tonight. Heck, it's already ten and I am wide awake with adrenalin rushing through my body! Annie, you are SUCH a fighter! And I hope that you are okay with the decision your dad and I have made for you. Do you know how hard it is to decide for you? I wish that you could talk so you could make your own decisions. But since you can't, your dad and I sure have to listen to the spirit in knowing what is best for you and Annie, your dad and I sure have felt like this is the right decision.

The doctors say that babies who have breathing tubes and end up getting trach's, usually become so much more happy and more comfortable; even the day of surgery. I sure am praying that is what will happen with you. It has been so hard watching you with your breathing tube the past couple of days because you HATE it. You shake your head back and forth (which you aren't supposed to do because if that tube were to come out, we would be in big trouble) and you try to get the tube out. So we have to hold your head and it is the most heart breaking thing. So I sure hope that this trach will help. (I sure am excited to FINALLY see your face and hold you when I please though!!!)

One thing that I have been reflecting on these past few days is a speech that your sweet aunt Emily's sister, Sarah wrote for one of her classes. I would like to share it with you because it truly helped me get a perspective of what you must be going through and what you maybe are thinking. It taught me so much of becoming selfless and not reflecting on how I feel, but how YOU feel sweetheart. (So I would like to thank Sarah for allowing me to share this remarkable speech):

My name is Annie Lynn Pugmire. I have been alive for almost 2 months. I am not like most babies.  I don’t know what a good nights sleep is.  I am woken up a lot to nurses poking me, bright lights and sometimes my tube getting in the way. Sometimes I get so mad that I can’t move or cry out loud and I stop breathing. When I stop breathing, it kind of scares me, but then I hear my mommy say, “Come on Annie girl. Mommy loves you. It’s gonna be ok.” My mommy loves me more than anything. I know this because she tells me all the time. She is here with me every day even though she sometimes can’t touch me or hold me. I think other babies get to spend more time with their mommies, but it just makes the time me and my mom get to spend together so much more special. 

         The mother of this little Annie girl is 22 years old. She is not much older than you and I. Not many years ago she was carrying on in life just like you and I. Her life has changed so drastically in the past couple of months, that some things we as teenagers care so much about, seem silly to her now as she sees what really matters in life; being a mother to her baby Annie. Annie was born 2 months early with many complications and is currently in the NICU at Primary Children’s Hospital with a breathing and feeding tube. Some of the most basic things that we as human beings take advantage of,  Annie lives without.

As teenagers sometimes we can become so consumed with ourselves and what is going on in our lives, that nothing else seems to really matter. Our generation has been referred to as the “ME” generation. Many are consumed with wealth, fame, and popularity, creating a self-centered world that revolves around virtual relationships.  So much so, that the Oxford English Dictionary proclaimed the word “selfie” as its’ 2013 word of the year. These relationships are largely empty and lack depth and human sincerity.  I often think about what Annie would tell us.  Perhaps she would say that if we are not careful, our experience with technology can cause us to miss out on the experience of human interactions as they were intended to be.  Annie would probably tell us that during her intense episodes where she isn't able to breathe, the comfort of her mother’s touch immediately calms her. She would tell us she is grateful for a mom who puts her needs above her own, as she spends hours at the hospital each day; that there is a team of people that care for her and help sustain her life as each breath she takes is monitored. She would tell us that the only thing that matters in life are the human relationships; the intense person to person interactions we form  with each other in this journey we call life. 

This past week there was a 911 call made to police, along I-80. The reports were that there was some sort of animal on the side of the road that was disturbing traffic. This mangled and hardly identifiable “animal” laying on the side of the road was actually a human being. As shocking as this story may sound, it is evidence of what can happen in a world consumed with itself.

            While there are countless examples that would have our generation believe that it is all about us, I am encouraged and inspired by the book, “The Fault in Our Stars”.  I think it is a perfect example of unselfishness and love. It gives light and hope that there are people that would sacrifice something for someone else.  In the book, Augustus sacrifices his last“wish” in his life to make Hazel’s come true by taking her to Amsterdam.  Augustus movingly sacrifices his desires for Hazel’s happiness. We would do well to find ways to be inspired by characters like Augustus.  

As we do this, we as teenagers do not have to fall victims to the “ME” generation.  An awareness of the importance of human relationships, kept in the forefront of our minds, can also help us avoid this trap. There are simple things that we can do that would make our Annie girl proud! Small things like eating lunch with someone who is alone, complimenting someone you never talk to, or going prom with someone who didn’t get asked are just some of the ways that those of the “Me”generation can reach outside ourselves and beyond the reaches of a virtual world.  

It has been said that “Love is the condition in which the happiness of another person is essential to your own.”  Though helpless, Annie experiences this every day through a mother’s love.  Her life is a gift to us and reminds us that of one of the most precious gifts we have in this life is eachother. 

My name is Annie Lynn Pugmire. I have been alive for almost 2 months, and I am not like most babies. Despite my limitations, I have experienced life to the fullest because others unselfishly care for me and love me. 

Thank you.

Annie, you are a beautiful daughter of God. And I sure feel like I am the most blessed mother to have such a wonderful daughter who is as special as you are. I love our relationship. Even though you may not be able to talk, I sure do know that we connect on a spiritual level. When you look at me with your beautiful dark blue eyes, I know your looking at me and saying, "Hi mommy, I love you so much, thank you for being my mom." Well, at least I think/hope that's what you're thinking. I sure know that you love your daddy too! You love your time with your dad! And Annie, he ADORES you! Your dad will just sit there and stare at you and whisper into your ear! (hopefully he's not telling you that he's your favorite because come on now, we all know that I'm your favorite!) ;) Just kiddin! I know you love us both the same and we sure do love you more than you will ever know! And we are SO blessed to have you as our daughter! You teach us something new everyday Annie! I sure do love you so so much!!! Have a good night and sleep well my sweet Annie!

Love,

Mommy

Oh yeah...! They changed your tape last week and I was able to see your FACE for the first time EVER!!! YOU ARE BEAUTIFUL!!!!!!!

Yeah.. pretty sure your eyes are GORGEOUS!

Annie-Daddy Time:)

Love you<3

Your Baby Blessing on Mother's Day:)

Dear Annie,

Well... Yesterday was Mother's Day! But the most important part of yesterday was that your dad blessed you yesterday blessing with your full name, Annie Lynn Pugmire. How amazing and unforgetful yesterday was and will be! The beautiful words that your dad said will forever be cherished in my heart. Annie, you looked BEAUTIFUL! We blessed you at 11:00 A.M. and your dad and I got up to the Hospital at 9:45 to get you all bathed up and beautiful. It's amazing how after your hair is all washed, how red it gets! I love that you have red hair:) It is the sweetest thing! It took me quite a while to find the perfect blessing dress but when I saw it, I knew it was perfect! It came with a bonnet but I wanted something more simple, something more elegant. My two friends gave me a gorgeous golden-leafed head band for one of my baby showers for you and I knew it would be perfect! It most definitely was! You looked breathtaking Annie. When everyone came in for the blessing, which was all immediate family on your dad's side and my side, they were breathtaken by your beauty but mostly, your sweet spirit. You have been such a wonderful example to so many people but mostly your family. They all love you so much Annie! And you have changed all of their lives for the better including your daddy's and mine. After your blessing, everyone got to take pictures of you and say there hello's. It was the sweetest felt spirit and again, what your dad said was so special and so sweet. There were many things said that helped me feel comfort in knowing everything would be okay even if it is something that will be hard for me to understand right now. I know with out any doubt in my mind that you, your dad, and I will be able to live together perfected.

The red light is from your oxygen monitor:) Your dad said it was Rudolph!

Annie, I am so grateful for your sweet little spirit! You are a remarkable daughter of God and are SO strong. Seeing you grow everyday has been so amazing. I've seen you calm, upset, in pain, and sad. But I know you ALWAYS have the spirit with you no matter what! you are such a wonderful and amazing little girl. I sure do love you so much my little one. You are my best friend and your only 2 months! But I can feel your sweet spirit and know that you can feel when I am there. I sure do love holding you! It is the best! Your daddy and I love you so much and pray for you day and night and basically all day, everyday. I love you baby girl. Keep fighting. We are all supporting and praying for you. Sleep tight sweet heart.

Love,

Mommy

p.s.
You got me a Mother's Day gift! It was the best gift I could have asked for!! I cried reading the poem!! Thank you sweet girl!