Wednesday, June 25, 2014

Infection

Dear Annie,

Well... this past week has been pretty crappy... A few days after your immunizations and the code blue scare, your belly button started to become more and more swollen and infected. The few weeks before that, I had noticed it was red and looked infected. The Doctors assured me that everything was fine and that it was because when you got your G-tube, they went through your belly button for the surgery and had put stitches that dissolve. Well... they didn't dissolve causing a really bad infection on your belly. On Friday while I was there, the Nurse Practitioner came in to look at it and decided to try to get the stitches out. She got two out thinking it was all and a lot of blood started coming out. It has been so hard seeing you like this because your heart rate has been so high, showing that you're in pain. The nurses have been giving you more medicine but it is frustrating because medicine isn't a cure - It's only temporary help. On Monday while I was there, I kept getting this feeling. I had been getting it for the past week but while I was holding you Monday, this feeling was SCREAMING at me. All it was saying was, "Her stomach". I told the nurse that I kept having this feeling that I thought something with it either being your stomach, or something in your lower abdominal area wasn't right. It pretty much came out like word vomit. But right after I said it, I felt so relieved and happy. She told me she would get the head nurse practitioner in to speak with. As you were sitting in my arms, I looked at you so relieved but so scared and sad thinking how much pain you must be in. The Nurse Practitioner came in, and I told her how I felt. She kept trying to convince me that she had checked your stomach earlier that morning and everything seemed fine. As she started to walk off, again, these words came out, "Whether it be my motherly instincts, the spirit, or anything, I really feel that there is something wrong." She seemed a little frustrated with me but I didn't care. I wanted to get you checked. The money didn't matter, her being frustrated didn't matter, I KNEW something needed to be done. So she finally came to her senses and said they would do an x-ray on your lower abdomen.
A few hours later, I received a phone call from the nurse practitioner saying that everything came back fine. I felt relief but still knew either way, you were in pain. A few hours later, I received another phone call, it was the nurse saying that your belly button had gotten worse... That surgery would have to come and check it out. When they checked it out, they got a lot more blood and puss out. How bad I felt knowing that would be so utterly painful to feel an infection in your belly. I asked if there were more stitches in there, and they said that they thought there were but they didn't want to take them out because it could still be holding something together. Then, later that night when I called, the nurse taking care of Annie said that you may be having aspiration - which cause some of your food to get into your lungs and a lot of spit up. I just began to cry. I couldn't sleep that night, knowing you were in pain. I stayed up as your dad held me in his arms trying to comfort me. I was so happy I said something to the nurse about your stomach and even though she wasn't for it, she finally came to her senses. I'm so grateful for the spirit in guiding your dad and I to help you. You are now on antibiotics for your belly and they did another x-ray on your lungs and said everything seemed fine but they changed you back to continuous feeds because you seemed more comfortable on that. They also stopped doing CPAP trials because they thought that maybe we were pushing you too hard, too fast. I sure hope that you will be able to get better Annie.

So many emotions have been running in me these past couple of weeks. I just wish that you could feel completely okay. The Lord is really trying your dad and I right now. And I know that I need to have Faith in Him. Complete Faith. But I'm going to be honest... IT IS SO HARD sometimes. So many people come up to me saying how strong I am. But in all honesty, I don't feel strong. Sometimes I just have to scream! I want people to know that behind walls, I cry, I scream, I am SO SCARED. I have to ask Heavenly Father every single day why this is happening. Why did you have to feel this pain? Why do we have to go through this? Why is it that you can't be home right now? SO MANY QUESTIONS And you know what? Sometimes I feel like I don't get an answer. Maybe it's not time for answers yet. But I know that being negative won't take me anywhere. But I know that I can't keep my emotions in forever. Yesterday at the Hospital was the first time the nurses had seen me cry. I think I bottled it up too long and I lost it. But I know it's okay to cry. But Annie, I want you to know, I will NEVER lose faith! And maybe the answers I'm looking for aren't the answers I want. But I do know and have a SURE testimony that our Heavenly Father loves us! He knows us better than we know ourselves! He sent His son to die for all of these pains, afflictions, and trials. And I know that we are never alone. No matter what storm may come our way, if we have sure faith, He will NEVER leave us or lead us astray. I'm so sorry I cry, scream and am a downer sometimes. But I want you to know how I am truly feeling. I love you so much Annie. You are SO strong! We all know it! You go through so much each and everyday! Keep fighting baby girl!! We are all here cheering you on!!

I LOVE YOU SO MUCH!!

Love,

Mommy












































 


Monday, June 16, 2014

Code Blue

Dear Annie,

Well... Something happened last night that I hoped would never happen. They had to call "Code Blue" on you. Your poor little body wasn't getting enough oxygen and you began to have an episode. Your oxygen level should be at a range from 92-100 and you desaturated down to a 9. Your heart rate also went down with it. Your heart rate typically is supposed to be anywhere from a range of 120-150, you went down to 30. The nurse on call was thankfully one of our primary nurses but even though she knew you well, she could not get you up. She tried suctioning you, turning the ventilator all the way up, and even bagging you. But nothing was helping. You began to turn not even purple, but black. The nurse called, "Code Blue". And after a long and stressful 10 minutes, they were able to get you back up. Your dad and I weren't there for this episode of yours but about 3 minutes after that episode had happened, I had a feeling I needed to call the Hospital. When I did, that's when I got the information about this big episode of yours. Annie, I just really wish I knew what I could do to help. It is so hard to see and know that you go through these episodes and I don't know how to comfort you. I pray to our Heavenly Father that he will comfort you in these times, that you won't feel pain.

When I got up to the Hospital today, I joined all of the Doctors and Nurses in rounds. We talked about what might be happening. We came to a conclusion that you got your immunizations on Saturday and that's what may be causing these big, severe episodes you're having. After rounds, I began to take pictures of you and noticed you were turning a little purple. I put my camera away, and you began to desat. Your oxygen was going down, and quick. It got down to 67 within seconds. A nurse rushed over and began to turn up your vent, your color was turning more and more purple. She decided to bag you. I sat there, holding your hand, not know what to do as your small little body began to turn darker purple. Your oxygen went down to 30 and your heart rate, down to 68. As she started to bag you, you began to go back up and your color began to turn more pink. I started crying, I was so scared. People always ask how I am doing... I just say it's a day-by-day thing. I can't reflect on the past or future. I need to reflect on what's going now because things could change tomorrow for the better or worse. But maybe yesterday and today were crappy days and tomorrow will be phenomenal. So I know I need to focus on your present self.

Oh Annie... how much I love you! You truly are such a fighter! I cannot believe how strong you are. Thank you for fighting. Your dad and I are so blessed to have you and for your sweet, big, and strong spirit. You are an amazing little girl. I hope you know that I love you so very much. I really wish I could take away your pain. You are so much stronger than anyone I know. I am so very sorry that you have had such a hard past few days. I pray you feel better. One thing I will tell you, is when I held you today, you looked SO relaxed! Oh how you love to be in mommy's arms! You were sweating so bad but you were so relaxed and I didn't mind the sweat :) I love you so so much! From your head, to toe! I hope you have a great night!! Kisses and hugs little Annie!

Love,

Mommy