Wednesday, April 28, 2010

NICU Updates

I am way past tired so please forgive me for not proofreading. I hope this makes some sense.

Yesterday was "very eventful" for Natalie. We received a call from her doctor in the morning letting us know she had experienced some acute breathing issues in the early morning and they had to escalate her care. By the time we arrived at the hospital they were maximizing her respiratory support. This is incredibly frightening as there is no where else to go when things are already at their highest settings. The rest of the day was spent trying to hold on and get Natalie stabilized. She was put on an oscillating ventilator in the morning when the conventional vent failed to work for her. They also started her on inhaled nitric oxide (NO). The NO is what seemed to make the biggest difference and she showed a great response. When the doctor came to tell me her oxygen requirements first came down after the NO we stood in the hallway hugging. It is so comforting to have doctors emotionally invested in the care of your child.

The doctor met with us last night and offered her assurance that she felt this was something Natalie could pull through. They feel that the PDA (now closed), ibuprofen and immature hypoplastic lungs all became too much for her to take on at once. The oscillating vent and NO seem to be just what she needs right now. The NO dilates the blood vessels in her lungs and makes them less "twitchy." The oscillating vent takes about 700 breaths a minute for her and keeps her lungs open gently.

Yesterday four people attempted multiple times to place an arterial line. Thankfully one is now in place so they can monitor her blood gases more accurately and sample her blood without multiple sticks. She is also sedated to allow her body time to rest and let the vent do its job.

Since last night she continues to improve and is now at 33% oxygen (down from 100% yesterday) and they have slowly started to wean her from the NO. They plan to move very slowly and gently from this point. Our hope is that she has a great time of stability so that her lungs will grow and produce more normal alveoli.

We saw Natalie this evening and she is as beautiful as ever. We only looked briefly as lifting the quilt to her incubator can be agitating for her and she needs as much peace and calm as possible.

We ask for your continued prayers for Natalie's health and for our family to have the strength to face the battles of the NICU. Yesterday as we finally made it to bed we both looked at one another and the consensus was "worst day of our lives." Life in the NICU can mean being thrown from one extreme emotion to another and it is more challenging than we thought possible.

Last night I reminded myself of all the things I have to be grateful for. The love and support of our family, the radiance of Anneliese, the strength of my marriage and the tenacity of Natalie. We have so much to hold onto right now and that makes all the difference.

Again, I will try to update as much as possible. Right now I am trying my best to regroup physically and spend as much of my awake time at home with Anneliese. We are enjoying being back together at home and she has been my constant companion. I will leave you with the song she made up for me the first night I was home. "I hugged you and you hugged me....we're together and I loooove you."


  1. Sounds like a very scary day. It's so hard when you don't know what else they can do or if it will even work. Im very relieved to hear that the NO and oscillator are working for her her oxygen requirements are decreasing. Is it ECMO? I get them confused. Anyway gotta love th ekiddos and the things they come up with. Continuing our prayers for Natalie and your whole family!

  2. Thanks for updating! I know that it's hard to find the time to do so with everything going on. I'm so sorry for the roller coaster of a ride you are going through right now. I cannot even imagine. Glad the oxygen levels are down now. I hope they stay that way. You've got a little fighter on your hands. And God has her held in his hands. She's going to be ok!! I believe that with every fiber of my being! Get some rest when you can and enjoy all the remarkable ways that Annie brightens your day! Love ya lots!

  3. I am so glad you updated. I was worried and I know it must have been a scary day for you and your family. She is so strong and such a fighter. We are keeping all of you in our thoughts and prayers.

  4. JT- sending you big ole hugs right now. I cant imagine going through a day like you had and yet you still have the strength of 10 mommas. We will continue to keep you all in our prayers. Thankyou for the updates. I know it is such a challenge to do all that you do right now. Im so glad to hear things were looking more positive. Hold on to that and take one day at a time.

  5. Thanks so much for the update. I know it's hard to do it with everyone else you've got going on right now. Yesterday sounds like one heck of a scary day for you and Steve. Natalie continues to prove what a trooper she is! My prayers continue throughout the day for her, Annie, you and Steve. I'm very glad that the adjustments the docs made seem to be doing to the trick. I adore Annie's song. What a little sweetheart you have!

    Amy J

  6. I'm sorry that Natalie had such a hard day but I am thankful she is doing better. I am praying for all of you!

    Hugs and Prayers,

  7. Oh, Jenn! I've been wondering how you and Natalie are doing. Every time I visit the NICU, I wish we were there together. Well, I'd prefer none of us to be there, but I think it would be amazing to have you there with me.

    You are so strong and your sweet little angel is just following in your footsteps. I'm so sorry that you all had such a rough day. But so very glad that you have such a wonderful doctor and they were able to figure out what to do for Natalie.

    I cried reading your last post that you were finally able to hold Natalie. I've been praying for both you and Amber. I know it makes me so sad when I can only hold Timmy for 30 minutes because of his bilirubin levels, but I cannot imagine what you have gone through having to wait for that moment. Oh, so glad it finally came! I know Timmy is at his best when he's in my arms as well. I know they know their mommies.

    My MIL held Timmy for 2+ hours his second morning and then he started getting really fussy. It has made me feel so good that he has yet to tire of my arms that never tire of him when I'm not limited to time constraints.

    Still praying for all of you. I would love to chat if you ever get a moment but COMPLETELY understand the exhaustion of trying to recover physically (I didn't have a c-section, but the bedrest has taken a toll on my body and my uterine ligaments have weakened as well. Not fun!), trying to care for an older child, make up for the time you weren't able to be with them and spend as much time as you can in the NICU.

    Thinking of you and praying for your whole family every day!

    Much love and admiration,

  8. Hoping that your NICU roller coaster ride is short-lived and Natalie's progress is straight forward with no twists and turns from here on out! I am so impressed with your ability to see the positive in your life rather than dwelling on the challenges. Each day is one day closer to bringer her home! :-)

  9. I have been where you are and I know what you're feeling. I'm praying for Natalie and for your whole family so that you can stay strong and hold on tight through this NICU ride. It's a rough one but it sounds like you have great doctors. I'm always here for you if you need a sympathetic ear.

  10. Sending you many hugs! I'm so glad she has such a talented and compassionate team managing her care. Hang in there mama, we're all praying.

    Bethany and Christopher

  11. Jennifer-

    I am so glad things seem to be on the upswing now. You and Steve have an amazingly strong new daughter!