Thursday, April 9, 2009

Tummy Time

Thursday, April 9, 2009 - Elle had her first foray into tummy time this morning. Lee spent the early morning with our little princess and came back to our room and told me it looked like she was having difficulty breathing. Not the news I wanted to hear first thing in the morning. I got to Elle's bedside around 9:00am to find Dr. Davis and Estrella putting Elle on her tummy. Evidently, she was throwing one of her hissy fits and they wanted to see if it would calm her down. My dad was at Elle's bedside bright and early this morning too so he helped pat her on the back to try to get her to calm down. It eventually worked and little miss priss calmed down enough to be held. I had to go and do my mom duties and check out of the ro ho and all that good stuff - so my dad became the first grandparent to get to hold Elle Belle. He loved every minute of it and was able to keep our little diva calm for almost 2 hours. My dad eventually had to leave to go to work so Elle and I spent the rest of the afternoon together. She is still learning how to breathe out of her little nose. I know she is in pain and gets frustrated and I absolutely hate that for her. Dr. Edmonds had to come by her beside a few times today to check on her. One of his trips to her bedside - he had to put the catheter down her nose tubes to suction them out. Elle hates this - and hated it even more when he did it because he had to force his way through a blockage to get the catheter to the length he wanted. I was holding Elle's arms down and Estrella was holding Elle's head while Dr. E suctioned. It was definitely a three person job. Once he was finished, he put Elle's pacifier in her mouth to be sure she was still breathing out her nose - and she was. He said we just need to monitor her extremely closely because she is so little. He doesn't want the tubes to get blocked up with stuff while her nose is healing. The afternoon was extremely difficult on Estrella and myself. Elle would go through periods of complete calm and then suddenly just go crazy. Her heart rate wold go through the roof and she would have difficulty breathing - and then we would calm her down and she would be fine. She is also having a ton of secretions come out of her mouth and nose which is making it even more difficult for her to breathe. Plus, she is still swollen from the nose surgery and having the breathing tube taken out. Poor thing is just hurting right now and there is nothing we can do about she has never had to breathe out of her nose so this is a whole new experience for her. I was holding her this afternoon and she was going through her fits when Estrella suggested we try to put her head on my shoulder. She had done great with tummy time and spent a majority of the afternoon sleeping on her tummy - so we decided to try it. Surprisingly it worked and I could have spent the rest of the day with her sleeping on my shoulder. Unfortunately for me, mom duties called so I had to put her back in her crib. When Lee, Vickie and my parents made it back up to the hospital - I was emotionally exhausted. I started crying just out of shear frustration because I don't know how to make her feel better. I kept reminding myself that at least she is crying and acting like a "normal" baby. Every time she would get mad, my eyes would go immediately to the monitors to be sure she was ok. It worries me so much when she gets upset because she is a cardiac baby. I feel so helpless! I know I shouldn't be looking at the monitors, but I am so scared sitting there with her just now learning how to breathe on her own! Everyone insisted on getting me out of the hospital so we walked over to eat dinner together. It was so nice to get away from the machines and to get outside. I try to sneak away during the day for some sanity, but this afternoon it was so difficult to leave her side. This evening, the nurses had to do some lab work on her. Endocrine doctors came by this evening requesting some tests to be run. I don't know what tests they are having run- I think it has something to do with her anxiety levels to be sure she is ok to go into surgery on Monday. I only briefly spoke with the endocrine doctors early this morning and Lee was with Elle this evening when they came back to let him know what they wanted to do. After our family members left for the evening, Lee and I sat with Elle and the nurses. We have a great group of nurses in Elle's area tonight - so I am hoping for a good night sleep. I trust every single person that Elle has working with her and around her which is a huge load off our shoulders. Our poor nurse tonight will definitely have her hands full. Miss Priss is learning how to breathe out her nose and in order for her to do that, someone has to stand over her bed and make sure her little mouth is open at all times. We don't think she has figured out that her nose works the same way that her mouth does for breathing yet. Laurie, our night nurse reminded us that she is only 48 hours out of surgery and it has been less than 36 hours since her breathing tube was taken out. We just need to give her a little time to figure everything out. In the meantime, I have to keep reminding myself that God's will is perfect for our little angel! I pray that the Lord not only give Elle strength to continue to get better, but he also gives me strength!
Isaiah 40:29-31
"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."


Eva Nichole said...

Hello my name is Crystal and I have a daughter who will be 4 tomorrow named Eva who has CHARGE Syndrome. I came across your blog from anther CHARGEr who found you in a google search and I just wanted to say Elle is ADORABLE!! She is such a blessing and seeing her baby pics makes me think of Eva when she was that little very sweet. I will keep Elle in my prayers.
Crystal and Eva

ellen charge said...

sending hugs hopefuly shell learn to breath easy thru the nose hugs

amanda said...

I am praying for this little one every day. I tell everyone what a miracle she is. She is beautiful and she is such a fighter. And you are right....she does have a WORLD of support!!

Mark Lupher said...

OK I have to admit that Granddad Beyer pretty good holding Elle. Yous would assume that he is saying sweet little things to her by the way he is looking at Elle. But I know his words are Rice University, sprint, hurdle! He can't fool me. He is brainwashing my little ballerina as he seeminly looks at Elle so innocently. I know that we all have our personal plans for Elle. Isn't it great to rest in the Lord and know that He will do what is best for sweet Eleanor. I ma glad that God's thoughts and plans are so above ours and His plans are perfect. Thank you Lord for Lee, Lisha, and Eleanor. We love you!

Grandmother Vicki

Lauterjung Family said...

Hi Lee and Lisha,
My name is Andrea and I have been following your journey for over a week now. My cousin sent me a prayer request with your blog attached. I have a 3 year old daughter named Lauren that was born with CHD and we spent almost 4 months at TCH when she was 5 months old. You are in wonderful hand...absolutely the best team of cardiac doctors and nurses. We are from Austin and traveled there to have them work on Lauren. I wanted to tell you that I have you all in my prayers. I pray for your continued strength. I know it wears on is a roller coaster at times, but try to remember that everyone has your daughters best interests in mind and all they want is for her to heal. If you ever have questions or need someone to talk to who speaks the lingo I am here. I find so much comfort in my cardiac friends...they truely understand all that you have been through. May God bless you all.
with love,

Meredith said...

Grandpa David looks like a pro with little Elle....great photos and sending our hugs to you guys...