A+ Day!

Today has been a very good day. We started early this morning and Brielle has been reminding us of that all day. Brielle's bed time is 9:30 p.m. and she will easily sleep solid until 9:30 a.m. but this morning we got her up at 5 a.m. and have been paying the consequences. The car ride was pleasant and uneventful which was great. Brielle was such a good girl but she did get upset only twice.

We arrived at the hospital just in time for our 12 o'clock appointment with the Newborn Medicine Clinic. Brielle saw Dr. Jeffrey Dawson who has been recognized as a "Best Doctor in America" in the August 2010 issue of St. Louis Magazine. The Dr. was very pleased with Brielle's progress. In fact when describing her progress the Dr. used the word "awesome and spunky!" We were told that we can start to gradually start weening Brielle off of her oxygen since she is doing so well. He did recomend that we keep her on oxygen for the rest of the winter. The Dr. told us that Brielle will more than likely get a cold since all newborns do but we are going to do our best to keep her as healthy as we can. I am looking into getting her a bubble we can put her in...

After our 12 o'clock appointment we went upstairs to the Ronald McDonald family room to wait for our 2:50 p.m. appointment with Brielle's surgeon. We were blessed with the opportunity to see one of Brielle's nurses, secretary, and the discharge coordinator who all worked very closely with Brielle. They were so excited to see her doing so well and were even more excited to hear about the good report we got from the Dr.'s.

The appointment with the surgeon was the best part of the day. We did not know they were planning on changing Brielle's button today. It was a teaching opportunity because now we will be changing her button ourselves at home. It was really cool watching the nurse take out Brielle's button. I had never seen the inside of a stomach before! Brielle's surgeon was very pleased with her recovery and she was also pleased with how the button looked. She had recommended that we start to change Brielle's feeding to a higher volume since she is gaining weight and is starting to ween off her oxygen. After the visit with surgery we were sent to radiology to make sure the new button was where it needed to be. They took some x-rays of Brielle's stomach while they put some contrast liquid in through the button. The liquid had something in it that would show up dark on the screen and we were able to see a very good outline of Brielle's big tummy.

After the appointments we met Dianne's dad and sister downtown and were given a hotel room to stay at for the evening. Brielle really enjoyed spending time with Papa Dohner and Aunt Dawn this evening, they make her laugh real good. We will plan on returning home tomorrow but are unsure as to what time. Thank you all for your prayers and support. It was a good day to proclaim God's glory through a beautiful, healthy, growing baby girl!

In his Service,

cody

Bri during her x-ray

The dark circle in the middle is Bri's stomach with some contrast liquid in it.

The Stinky Poopy Song!

It has been a great day! Brielle and I were able to spend some quality time together this evening and I have taught her almost everything she needs to know and I threw in a few tricksa. She will soon be doing college algebra.

Today Dianne and I took Brielle to her local pediatrician for her 3 month check up and we had some good results! Brielle's Dr. is very excited about how well she is progressing and is very confident that we will continue to see a good progression. We had a weigh-in today and Brielle is up to 10lbs! I could have told the Dr. this because it does seem like I have to use more strength when picking her up, plus her legs are getting chunky!

Brielle has two other Dr.'s appointments on Monday but they will be in St. Louis. One appointment is to see a special medicine Dr. and the other appointment is to see her surgeon. We are planing on driving up to St. Louis early monday Morning and coming home Tuesday. It is so neat watching Brielle move around, she is getting so strong! She is also starting to practice her talking with the occasional "coo" and "ahh."

We are still having a Home Health nurse come to the house three times a week but will soon be cutting the visits down to twice a week. Brielle's physical therapist had discharged Brielle this past tuesday because she is making great progress, we just need to continue to stretch her arms and legs and play a lot. I love to play!

I am very thankful for the wonderful blessing this past year has been despite the many tears and fears that have come with it. I am amazed by how God can do great things through little things. When I look at my little girl I am so thankful for the life God has blessed me with yet my gratitude becomes even greater when I think about the gift He gave through another little baby.I look forward to telling my little girl how God brought love to a loveless world through the birth of His Son Jesus. It may not be an accurate time frame of when Christ was born but that is not why we emphasize love, joy, and peace this time of year. We celebrate because God kept a promise. He went beyond all of the world's expectations and He brought us love.

I would like to express my gratitude to all of you who have helped and supported us whether through finances, prayers, hugs, emails, phone calls, or just a kind word. Thank you, I will never be able to fully express my gratitude but please know that Dianne and I love and appreciate all of you so much. Be on the lookout for an update on monday!

In His Service,

cody

Letting it out...

Bath time!

Nap time!

Daddy showing Bri the Christmas tree for the first time!

Scared, tears, doubts, confusion, terrified, unqualified, unanswered questions, hoses and cords, choking, blue faces, alarms beeping, sleepless nights, lacking milk supply, some more tears, insane emotional roller coaster, blessed, thankful, pure joy, smiles, incredible husband, happy tears, precious child, innocent baby, poopy diapers, stained clothes, coos, miracle, beautiful Brielle. How is it possible to feel/go through all of these things in one day….one hour. I keep being told to take things one day at a time. But sometimes, that is too much to handle. So I take it one hour at a time. I look at my daughter and see a perfect little baby…who has to wear an oxygen cannula in her nose so she can breath, a hose sticking out her her belly so she can get nutrition to grow…so she doesn’t aspirate and get pneumonia again…but she’s my amazingly strong baby girl.

I definitely don’t feel strong enough or skilled enough to handle this Lord. Tears falling right now. I love this little girl more than I ever thought possible. My heart aches when she struggles. I get sick to my stomach after she’s had one of her “turning blue” episodes. I’ve always struggled when it comes to confidence in myself and my abilities, but I definitely see God using all of this to mold me in this area.

In the middle of writing all this, Brielle’s O2 levels began dropping. She had been in the 90% range then I hear her gasp for air. All of a sudden her monitor alarm goes off. 81,72,60…..down to 6. I try suctioning but didn’t get much…WHAT’S GOING ON? Keep trying to suction. That’s not working. She’s turning blue, eyes wide open staring at me. Mom why aren’t you fixing me? I’m pressing on her chest, blowing on her face, turning her oxygen up….it all happened so fast yet seemed like an eternity. She finally began turning red again…then pink…she was back. I turn off the suction machine, pick her up, begin to bawl, yell/plead with God to heal this little girl. Finally get my composure back, call my husband who’s at a church meeting, begin to lose it again. She’s ok now but….tears, tears, tears.

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It’s been 2 days now since writing this. One thing that Cody and I have come to realize is that Brielle is a breath holder. She’ll get upset for whatever reason cry out whatever she can….then just hold her breath. Turn blue. Scare her mommy and daddy. Then she’ll recover. She’ll be very somber and kinda of out of it for a minute, but be just fine after that. According to some research I’ve been doing, I’ve come to find out that a lot of children do this. That’s all fine and dandy, but with Bri, it’s hard to tell if she is actually choking because she can’t breath or she’s not breathing because she’s upset. Not fun. I’ve actually read that it can be genetic…and also a symptom of anemia....which Brielle is anemic as of now.

I’ve had some good conversations with my sister and dad the past couple days. They are very encouraging. Dawn sent me a message yesterday that made me cry. It simply said, “Even though sometimes you may not be confident in yourself, it is reassuring to know God has confidence in you, and that is why he gave you a special little chunky butt girl to take care of.” :-)

My dad encouraged me with loving words. He spoke about my grandma, his mom, who also cared for a child with medical issues. He said how I have my grandma’s blood running through my veins and she was a strong woman with tremendous mothering skills. I miss my grandma. I wish she would have been able to meet Brielle and call her a cute little boy…like she use to call my little girl cousins! Ha!

I realize this is all very random and unorganized….but that’s my life right now I guess. It’s getting better each day. I definitely feel more comfortable when Cody is here with me. I still get sad/anxious when he leaves for the office in the morning. It’s just me and Bri. The last couple days I’ve been able to actually enjoy being with her. Yeah, I’ll feel a little uneasy as the morning starts, being exhausted from the night before, knowing I’m the one in charge of this little human being. But we have fun. Yeah she’ll have her fussy moments or her “I’m so mad right now I’m going to hold my breath until I almost pass out” moments, but then she smiles at me, or toots on me…and all my fears go away. I enjoy working with her on her therapy exercises. She’s getting so strong!

Today I felt a peace I haven’t felt in a long time. I was just looking at Brielle and just felt at peace. I truly believe that her struggling with eating and oxygen are only temporary. Not in the sense that all things are temporary in the idea of eternity, but that in her life, these difficulties will not last long.

I'm not writing this because I want sympathy or "oh, i'm so sorry" comments. My life is a lot better than many. While being in St. Louis I witnessed 2 families, who stayed in the Ronald McDonald house with us, lose their child. I've had family members lose their baby. I can't imagine their pain. I didn't lose my baby. She's right next to me as I'm writing this. I know I am blessed beyond measure. But, life is hard. We were never promised that this life would be easy. Living in a fallen and sinful world comes pain and suffering. But we have a God who walks through the hard times with us, giving us peace and comfort and strength. He went through the ultimate suffering and sacrifice when he sent his Son down to this rotten earth to save you and me from the pits of hell and eternal darkness....eternity with absolutely no good in it. So, again, I am not writing this for any reason other than to share my heart, to deal with some of the struggles I'm going through...to heal and gain strength.

I guess I’ll end this excessive blabbering with a scripture that is dear to me…one that helps me get through the day.

The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. (Isaiah 40:28-31)

-Dianne