Thursday, April 22, 2010

Day 2

Natalie did very well her first day in the NICU. Every neonatologist we saw was grinning and clearly thrilled with her. She is not the baby they had been warned about for months. Over the course of the day and into the night her vent settings were lowered. When we said goodnight the doctor said he expected her to be off the vent and onto C-PAP (a lower level of breathing assistance) by the next day. At 4 am we received word that she had been taken off the vent and was doing very well. It was an incredible feeling of success.

As we had been warned, the NICU is more of a roller coaster than a straight line of progress. This morning her oxygen levels had to be continually raised and chest X-ray showed that her lungs were hazy and not as inflated as the day before. The doctors decided to try another dose of surfactant so she was intubated again. They left the breathing tube in and put her on the vent to watch her progress. The surfactant helped some, but was not the solution we were looking for.

This afternoon she had an echocardiogram and a large PDA (patent ductus arteriosus)was found. PDA occurs when the connecting blood vessel between the pulmonary artery and the aorta in fetal circulation, called the ductus arteriosus, stays open in a newborn baby. For a preemie this can cause respiratory stress and make distributing oxygen difficult. The cardiologist said her PDA is so large that it is the same diameter as her aorta. It is very likely that this is the source of her respiratory distress. I many ways this is a relief to me as a PDA is a clear cut diagnosis and there are well established treatment plans.

She will receive her first dose of indomethacin tonight in hope of closing the PDA. There are three doses given 12 hours apart in each round. If the first round fails to close it adequately she will receive one more round. If that too fails she will need surgery. The doctor feels one way or another the issue should be resolved by the end of the weekend.

While she is on the indomethacin feeding her is out of the question. She is still receiving her nutrition intravenously through TPN. I am really hoping to have her stabilized soon so she can start getting milk.

The neonatologist explained that she is more complicated to treat and diagnose because to some extent her lungs are still an unknown. She does feel confident, though, that we will primarily be dealing with complications from prematurity and that her lungs are much better than anticipated.

We are amazed by our little girl and falling more and more in love. She is so strong and has endured her medical interventions incredibly well. I am in awe of her. It is such a struggle to be down the hall and away from her. I still find myself rubbing my belly (now more of a defated dough ball) and waiting to feel her kicks.

The reality of having a baby in the NICU is settling in. My overriding emotion is sheer gratitude that she is here and doing so well. Countless times a day I am struck all over again that she is born, she is breathing and she is ours to keep. At the same time, seeing your daughter need this degree of medical assistance is difficult and I long for the day I can actually hold her and care for her on my own. I am eager to finally put aside some of the constant worry that has been with us for months and not have so many medical uncertainties to face everyday. We have already overcome great odds to get this far and I am confident that we will get through this time as well.

I myself am dealing with a new level of fatigue. Coming off from 15 weeks of bed rest, recovering from the C-section and anemia from the abruption and surgery (my uterus would not contract so I had additional blood loss) is taking it's toll on me. I have hopes of focusing on rest, pumping and Natalie for the remainder of my stay. I need to build up some endurance for returning home.

I have so much more to say about our remarkable little girl but I suppose I need to start committing to more rest now. Thank you all for your continued support. Being with Natalie feels like witnessing a miracle and while it is a challenging time these are also euphoric days. I am so happy to share her story with you.


  1. Glad to hear that she is "stable"!. It seems as though, as you said, the PDA has a clear cut plan of attack. That's a lot better than not knowing what you are dealing with! She is absolutely gorgeous :) Has Annie seen pictures? Get some rest. For long hospital stays, being a well rested parent/caregiver is so extremely important, especially since YOU underwent surgery as well. Love and hugs... Haydon and Cass

  2. I have two things to say:
    First, Praise the Lord!

    Second, The smallest girl in my class is a Natalie too. She may be a half pint, but oh my she holds her own! And, she never. stops. talking! LOL I think Natalie is a powerful girl's name! Can't wait to see all the ways she surprises you in the years to come!

  3. I am praying for you to get some rest. You are going to need it when Natalie comes home. I know it is so easy to say, but so hard to actually get any rest...especially at the hospital. I am happy they were able to find out what was wrong and have a plan to fix it and hopefully she will be on her road to recovery. She is a miracle and God is showing you how well he answers prayers.

  4. I am in awe of you, your husband, and your two little girls. So much strength in one family. You did a great job bringing that baby into the world. Not to sound cheesy, but I'm proud to know you and be your friend. Rest up!

  5. It is so great to hear that she is doing well. She is an absolute miracle. She is strong. just like her mommy. daddy. and big sister. we will continue to pray for you. Rest as much as you can. We are so proud of you. lots of love. Kelly, vlad and Anya.

  6. JT

    I'm praying for Natalie and you. Get plenty of rest and hopefully you'll feel some energy come back shortly.

    It's such a miracle... I'm so very happy for your family!!


  7. On The Road Again, with love Grandpa.

  8. I have been quietly following this journey and was so excited to see Natalie had been born. I am praying for you each and everyday. I have not had a PpRom but I have had a very difficult pregnancy and you are inspiring to me. Rest up MAMA!

  9. JT, Natalie, and family......I'm in awe at how beautiful your baby girl is!! You both are a true inspiration and nothing less than a miracle! You're in my thoughts and prayers. Congratulations!!!!!!

  10. I have no idea how to contact you other than this, but I am hoping that you can help me!

    I am a member of a birth club, and a lady in the group has recently posted about how her doctors have diagnosed her with low fluid levels and have said that there is no way her baby boy will survive (she is 24 weeks), and she will be terminating next week. Here is the link to the post:

    I know so much is going on for you right now, but if you feel as though you could help this woman in ANY way, please do!!!!

    If you need to, you can contact me at

  11. JT,
    I am thrilled to hear how well Natalie is doing and as usual you inspire me as you keep going on this long journey!

  12. Congratulations! We are so happy for you guys! She is sooo precious and adorable. Take care of yourself. With love, Angela & Fred (and L)

  13. Congratulations Jen! Natalie is beautiful! I am so happy for you.