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Sunday, July 29, 2012

ENT follow up

Addie had her ENT follow up Friday. Not sure if everyone remembers, but the day before we got discharged from Children's, Addie was diagnosed with a paralyzed vocal cord. Scott and I were both positive it was repairing itself because Addie is so much louder. She is no longer hoarse and sounds like a normal baby. Unfortunately, our ENT doctor, Dr. Brenski, informed us that it has not begun repair.  We also found out Addie has some edema (swelling) on her working vocal cord. I was pretty devastated.  Dr. Brenski said not to give up hope though because 1/3 of patients start repairing by 3 months, and 1/2 by 6 months. The repair percentage goes down after that. Dr. Brenski increased Addie's Prevacid dose to 2x per day in hopes of stopping any spit up to decrease the swelling on her vocal cord. She also decreased the amount of time she can eat from a bottle to 10 minutes to hopefully prevent any aspiration. I think I was so bummed because a repaired vocal cord means more time eating from a bottle which means less time with the NG (feeding) tube. 

Please pray specifically for Addie's vocal cord to start repair. We go back for a follow up in December so I pray we will find out good news then. 

Tuesday, July 17, 2012

2 months

Addie was 2 months yesterday. That just doesn't seem possible. I guess because we have only been home for a month, it seems like she should only be 4 weeks or so. Anyway, Addie is a smiling, cooing, sweet baby! She is just a really good baby. She sleeps well and seems pretty content most the time. We had a couple doctor's appointments this week. Yesterday, Addie went to the pediatrician for her 2 month well check up. She weighs 9 lbs 11 oz and is 22 inches. She is very porportioned, 10-25% in everything they measure. We did get 4 vaccines, 3 shots and 1 oral. Addie cried for about 5 seconds and then was fine. She is one tough cookie! Our cardiologist wants Addie to stay on track as far as her immunizations so we will pretty much be getting worked over at every doctor we go to. We did find out some good news at the pediatrician. At Addie's one month check up, Dr. Linderman noticed Addie's right hip was clicking. She said if it didn't tighten up by 2 months, we would need to see an orthopedist and she would possibly need a harness. Yesterday, Dr. Linderman said her hips were perfect. I might have screamed, "Praise the Lord," really loudly. Seriously, thank God for the little things.

Our other appointment was our clinic appointment today at Children's. Addie had an X-ray, EKG, and labs. Her X-ray looked good. Dr. Ikemba showed me last months in comparison with this months and her lungs were a lot less "wet." This means we might get to stop the diuretic medicine she is on pretty soon! Woohoo. All her labs looked good today. There are so many scary side effects of one of the arrhythmia medicines that Addie is on, and it was really good to know that it isn't affecting her right now. Her EKG showed a couple things; one was that she wasn't preexcited today (a sign of SVT) and the other thing was that she had a Long QT (another form of arrhythmia). Dr. Ikemba spoke to an electrophysiologist about this and she thought that the computer may have over measured this wave so it wasn't as bad as she thought. Addie had to come home on a holter monitor today for 24 hours. This will show any arrhythmias she has at home. We will have to return it tomorrow.

We have a couple big dates coming up. One is Addie's heart cath on August 20 and the other is her possible 2nd surgery, the Glenn, on October 25. It is weird to think that in a few short months we will be heading back in for another surgery. I go back and forth on whether I am ready or not. I am ready because Addie will be much more stable, but I am not ready because it is another stinking surgery. Please continue to pray for our family and most especially Addie.

Sunday, July 15, 2012

For my mom

We miss you so much already! For the past 2 months you were a regular part of our day to day lives. I never thought I would have that opportunity again. These are not the circumstances I would have ever wanted you to be around for, but I am so glad you were here to help and nurture. Not only did you nurture Ellie and make sure she was ok, but you also nurtured me. You are one amazing mama!  I got teary eyed today when Ellie asked, "Where's Mimi?" I told her you were in Spearman, and all she said was, "I need her." I was thinking the same thing. It makes my heart so happy that Ellie loves you that much! For the 29 days we were in the hospital, I never worried about how Ellie was doing. I was so grateful it was you staying with her. I knew she was having a good time, but most of all, I knew she was being loved and getting attention Scott and I couldn't give. There were days in the hospital that you stayed overnight so Scott and I could come home and get a good nights rest. We will forever be grateful for the time you spent here and loved on our whole family. We love you, Meems!

Monday, July 9, 2012

A new perspective

This weekend was tough. Bringing Addie home has been the toughest on Ellie. I never really had to discipline her much before Addie came home. Now, I feel like all I do is say, "No," and put her in time out. She has really been acting out lately. Also, our bedtime routine is non-existent anymore. Ellie stays up most nights until 11 refusing to be rocked or do anything besides watch and play the iPad. Scott and I are both struggling how to remedy this newfound resistance of Ellie's, and it is really putting a strain on everything. Also, we had to take Addie to the ER on Saturday. Around 6 pm I noticed she was kind of blue around her mouth so I text the Safe at Home nurse practioner to ask if we needed to bring her in. They told us to go ahead and bring her in so she could be evaluated. By the time we left, her color was normal, but I got a little scared. Things I normally don't think about started going through my mind and I immediately started crying before we left. She ended up checking out fine at the ER, but I do forget sometimes how serious Addie's condition is. I found myself feeling sorry for myself, our family, and especially Addie. I was also just mad. This whole situation really ticks me off sometimes, and it isn't easy. I have a hard time staying home all day most days and get really tired of rushing Addie to the ER, dealing with medicines, feeding tubes, doctor appointments, etc. I especially hate all of this for Addie.

At church yesterday, Scott Dickison, one of Wilshire's pastoral residents and a friend of ours, did the children's moment. He gave all the kids "church" glasses. He reminded all the kids that they needed to have their church glasses on and view things the way God intended them to be. He said to put these glasses on when you are down and in need of a new perspective. I am putting my "church" glasses on and am determined to find a new perspective this week. We are all home together and are mostly healthy. We have great friends and family, and have had God's loving arms wrapped around us for the last 2 months. These are reasons to be rejoicing for sure!

Thursday, July 5, 2012

7 weeks

Addie was 7 weeks old yesterday. She is such a sweet and happy baby. I feel like she is totally different from Ellie....she doesn't cry much and is super laid back. She is also a great sleeper (right now anyway). We have started doing a little tummy time and have started holding her like you would when you normally burp a baby. She seems pretty strong and does a good job holding her head up. I still don't pick her up under her arms, even though we can now. She had sternal precautions until 6 weeks after her surgery, which was July 2. She had a check up on her wound at the top of her incision on Tuesday of this week. Everything looked fine, and they are just going to keep watching it. It keeps scabbing and falling off, scabbing and falling off, etc. They said it will keep doing that until the suture finally works itself all the way out. We have her regular cardiology appointment next Tuesday and it will be a long one with an ECHO, EKG, X-ray, and labs.

I feel like I am finally getting the hang of most things at home. I keep saying this, but I don't know how the days are going to go without my mom here. She is leaving in a couple weeks, and I will be on my own during the week. It is so time consuming to pump, then feed Addie, then clean everything, administer medicines, etc. that I am really concerned how it is all going to work out when I am by myself. I feel like something is going to have to give and that might be pumping, which is really kind of upsetting. I guess we will see how it works out when I am on my own though. Hopefully I can keep it all up!

Yesterday my mom and I took Ellie to the Lake Highlands July 4th parade, and then Scott and I took her to watch the Lakewood fireworks. We got a couple really cute pictures of the girls in their July 4 outfits.