Tuesday, June 15, 2010

Read this and feel better

After I got off the phone with the doctor this morning I was feeling a bit more optimistic. She felt that by the time we reached the hospital Natalie's O2 setting would be even lower. Well, Steve went for a quick visit during his work day and her settings had gone back up to 95%. They have also placed a CO2 monitor on her chest. The numbers themselves are not accurate, but by tracking them the doctors can see if her CO2 is trending up or down. This should reduce the number of blood gases she needs. While Steve was visiting her CO2 was tracking higher and higher. He called to update me on my way to the hospital and I felt deflated.

Luckily my mother in law happens to be a saint and took Annie last minute so I could go visit Natalie. When I arrived at the NICU I was trying my best to stay calm and collected. The receptionist called the pod to see if I could go back (this is standard procedure each visit) and I was told to wash up, sit down in the scrub room and wait. They would come get me. This has never happened before and I was terrified of what it meant. Was she being bagged? Had she crashed?

While I was waiting the nurse manager happened to walk by and notice me. She came in, grabbed my face and said "Natalie is going to be FINE. I just know it deep inside. This is not entirely unexpected. You've been here before and I am sure never wanted to be here again, but she made it through last time and she will again. I saw her yesterday and she was wide awake. When I called her name she looked right at me. She is strong and she is fighting." Can you imagine how my chest opened up and my heart was lightened? Why can't these angels drop by every day?

Natalie's nurse (one of my very favorites) then came in and said "Natalie is doing well. We are trying to place her PSC line (similar to a PICC line) and it will be awhile. Go out for a bit and I'll call you when it's done." I was sad that Nattie needed another painful procedure but grateful she had a loving nurse by her side.

I did step out to clear my head. Unfortunately they were unable to place the line. This meant they had to try again by doing a "cut down" where the arm is opened up so the vein can be directly manipulated. She was heavily sedated for the procedure and I am told they also numb the area. As long as the line is in she will have sutures in place. I am very concerned about infection but it is another situation where we have to do what must be done and worry about consequences later.

I went in to visit her before the second attempt and felt better than I thought I would. I've mentioned before that the oscillator is an imposing and loud machine. It also makes little Natalie vibrate and that takes some getting used to. At the same time, she appeared comfortable and relaxed.

Here's the amazing news-her O2 was at only 70% !!!!!!!!! AND she was satting in the 90's!!!!! Her CO2 was trending down again as well. Such is our life that O2 settings in the 70's are great news, but I am not turning my nose up at it. The nurse was very pleased and said she feels the oscillator is what she needs right now. Apparently she had been thinking they should try it for about a week. It seems we were all walking around thinking about the oscillator but no one wanted to say it out loud. Me and my big mouth. I wish I had opened it sooner.

Our evening update was that her blood gas showed her as being overly ventilated-music to this mom's ears. Goodness, I have not heard them say "over ventilated" in weeks. They were able to go down a little on the vent's power settings and she will have a repeat blood gas late tonight. So far she seems to be tolerating the power change well. Her O2 requirement has stayed around 70-75% although it had to be raised to 100% while she was getting her cares done.

So far there has been no news on her cultures. She was put on an anti-fungal med and a broad spectrum antibiotic. No decision yet on whether they will do a full course of meds even if nothing is cultured. The doctor was amazed last night at how liberal the infectious disease team has been with giving her antibiotics. There job is to keep it to a minimum. They are really making exceptions for her in hopes of it making a difference. While I wholeheartedly agree restricting antibiotics is what is best for the general public for controlling drug resistant bacteria, when it comes to my critically ill infant I say "bring 'em on." In my defense Anneliese is nearly three and has never taken a single antibiotic so maybe it all balances out.

They have yet to find a way to manage her secretions on the oscillator. A new nebulizer treatment has been added that is supposed to help break them down and move it out. The jet vent does a great job of clearing out secretions and that is the exact reason it failed her. They could not keep up with the suctioning.

This morning I was nearly immobile with fear of what the day held. I have been trying to prepare myself for making unthinkable decisions. Guess what? You can not actually prepare yourself for such things. Instead I am trying to let go of fear as much as I can. Living this way will not change the outcome and it only takes away from the time I do have right now. I am going to put my sole focus on loving Natalie and enjoying all that I can with her.

Ahhhhhh......tonight feels worlds away from last night when we stared at the ceiling for hours trying to hold on to sanity. I do feel the right choice was made and that Natalie can benefit from this change. My hope is that she can be kept calm and sedated with the vent doing all the work. This way her body can use its energy to grow and heal. Grow and heal, grow and heal. I have been whispering this into her ear and hope that her lungs are listening. We are also counting on the oscillator being more gentle on her lungs and her O2 requirements coming down. If that can be accomplished the new tissue growing should show less BPD changes and will be better quality lung tissue. Still a long long way to go but now there is hope that this strategy may work.

I know better than to go crazy with getting my hopes up right now but at least we are off to a good start with the oscillator. Today could have easily gone in a very different direction. I have a lot of hopes and prayers rested on that hulk of equipment. I also have a lot riding on the fact that Natalie is an extraordinary girl. I can not recall how many times we have been told not to expect her to make it and here she is fighting along. I think I had it right when I said I should nickname her Cassius Clay.

Have I mentioned the spoiling this child has waiting for her once I can truly have her in my arms? I know I have to raise her as I would any baby because I do not want her to be coddled and overly protected. That said, I think we are owed some months of outright pampering and spoiling to make up for all she has endured. At some point the scales need to tip much more in her favor. I promised both girls a trip to Disney World (or Mexico or any place warm and fun) as a celebration when Natalie's health allows it. It is one of the many bribes I have offered her in exchange for fighting hard. This family is going to need some serious R and R one day.

Thank you for being with me today. I took great comfort in knowing that so many people were thinking of Natters and wishing her the best. The last time she had a day like this I was curled up on the couch in the NICU family room barely able to raise my head. I was so overwhelmed with emotion that my body shut down. Today I was at least able to walk in with my head held high and face what was waiting for me. By the Grace of God for once there were pleasant surprises to meet me.


  1. Great news for the day! I will pray that the improvements continue. We love you guys!

  2. Oh Jen- I am in tears reading this. Praise Jesus! What an amazing little girl you have. Hang in there. Do you have the book The Little Engine That Could? My dad used to read that to me as a wee one. In fact he has a copy in his office. "I think I can, I think I can," and eventually..."I thought I could, I thought I could." I am just so thankful for this good news. Praise be to God.

  3. I will go to bed tonight with a thankful heart! I am beyond happy to hear some good news, and know that God was indeed listening. Lots of love to you JT!

  4. That is WONDERFUL news JT. I too can go to bed peacefully knowing that God took care of this little girl tonight and I fully believe that he will continue to. Keep your chin up and head high. She has one awesome mom!

  5. First, your daughter is so beautiful. Your love for her is so pure and strong. It is a miracle to witness your faith and transformation.

    Like Natalie, my son was vented for a month and required oxygen to heal his lungs for 8 months. Keep your eyes open and you will see God's presence everywhere. We are holding each other up.

    Praying for your family.

  6. I got up early this morning so I could check on Natalie before I went to work and I am so glad I did! Praise God that she is better! I pray for her all day long. She is always on my mind. Lots of people who don't even know her are praying for her too! Stay strong and give her a kiss from me. <3

  7. So nice to read a positive post this morning!! Thank God above for watching over your baby girl!! I'm hopeful that this is the first of many posts that tell of her improvements!!! Praying for her throughout the day...each and every day!! Lots of love sent to Natalie, you, Steve and Annie!! You are all amazing people!!

  8. Im so glad to read happy news. Fly like a butterfly. Sting like a bee. Keep fighting Natalie. You are strong. You are keeping your mommy strong. Your daddy strong. And your beautiful sister strong. We love you and are praying for you! xoxo

  9. I am so happy to read this new update! My heart is beaming right now. Keep on fighting, sweet Natalie. Always thinking of you and your parents and sweet sister!

  10. Thank God...I prayed all the way home!

  11. My whole family got together last night and prayed for Natalie. Stay strong, this road is rough, but the time for baby spoiling and some r&r is right around the corner!

    Brandy (pprom.wordpress.com

  12. I have all my freinds praying for Natalie and for you to experience more good news in the near days to come. God Bless your little girl- amy

  13. My prayers are with your little angel Natalie and your entire family. God bless you all.
    I know she will pull it through!

  14. How about Arizona? It's VERY warm right now!

    Soooo glad you got good news yesterday. I know what you mean about the high hopes. They gave me a double positive last week starting Timmy on half breastmilk (I still have frozen from days after he was born!) and steroids for another extubation attempt. So hard to hear when that one failed as well.

    You do have one amazing little girl. And it sounds like you have some amazing nurses also. Praying for you night and day. Wish we were closer and could coordinate schedules for better support. Just know I think of you constantly and hope you're getting good news every moment of every day!