Friday, August 20, 2010

In Mommy's Arms

The last time I held Natalie it was June. I can not really let that sink in as it is too depressing. Today when she was placed in my arms I realized "We have a baby!" We've been deprived of real physical contact with her for so long now that it is easy to forget that really she is still a little baby girl. It was bliss to just cradle her and not think about blood gases or what our plan is. We were just the two of us again. Towards the end she woke up and I wish Steve had still been there with the camera. The look on her face was priceless. Waking up to find herself being held and Mommy's face so close to hers was clearly confusing.

Note...To save on typing, I will now call the oscillator HFOV (high frequency oscillating vent) and the conventional vent will just be "vent."

Last night Steve went back to the hospital and Natty was stressed out. When she becomes aware of her ET tube she gags and finds it hard to settle down. When he left her O2 was at 70%. We knew going back to the vent would most likely mean an increase in her oxygen needs and tried to brush it off. When I called for the goodnight check her night nurse had done a breathing treatment of sorts and brought out a lot of secretions. In the first hour and a half of her shift she brought Natalie from 70% down to 38% (just one reason we love Kathy). I was so thrilled I could not sleep for hours. This is as low as she had been in about a week or more.

At 6AM the phone rang. I assumed it was news about the GI films but no, it was her nurse calling to brag about her CO2. After over a week of being in the 70's every morning she had a very nice 62%. Kathy was so thrilled she wanted to call and give us some good news for a change. What a lovely way to start the day!

She spent the night between 38-42% O2 and remained there for most of the morning. By the time we arrived in the late afternoon she was up in her Os and has been a bit ever since. The lowest she has been tonight is 49%, but that is not too shabby. She is also on half the Lasix that she used to be so all in all it is amazing how well she has done.

The radiologists have not found anything of note on her films. This is incredible, as the surgery to correct strictures is involved and she would not be stable enough for it for quite some time. The doctor was pleased and planned on restarting feeds. Well, just in time she kicked out some bilious discharge. This is a sign that her stomach contents are not moving through as they should. Feeding was suspended and she was given another replogle tube and placed back on suction. They are going to repeat X-rays over the weekend and watch until the barium has completely cleared. If things are better by Monday she may start small feedings then.

They have no idea why her GI tract is acting up. There was a lot of sighing while we were discussing it. The good news is her belly is soft, her girth is down, she has great bowel sounds, she is a tooting machine and FINALLY is pooping without suppositories. That is a lot of good all things considered.

We had some complicated conversations about where we go from here. What we know so far is that she will get her echo on Monday. It is a few days early but he wants to know where the pulmonary hypertension is before he proceeds. It is frustrating that she can not have Viagra while she is NPO. There is not an IV formulation available. The echo was supposed to help evaluate the effectiveness of the Viagra but now she will have been off of it for days by the time of the test. Hopefully the PH is stable or improved and we can start to go down on her iNO.

Most likely we will do a round of steroids next week to try to get her vent settings down. After that, there are a lot of unanswered questions. I think we need to get about 5 specialists in a room together to formulate a longer term plan.

Today I had a doctor's appointment for myself. Most of the appointment was updating her on Nat's status. I had not been in since before Natalie developed NEC, so there was a lot to cover. My doctor's eyes were huge and she said several times "This child wants to live!" Indeed.

Natalie waking up post vent change. She was looking everywhere trying to figure out what had changed. Her left eye is puffy from being in that position for a bit. The lower eye tends to get positional edema.

Natalie sleeping through the excitement and wiggling her toes. Her club foot (on the right) has straightened out quite a bit on its own.

Natalie's room yesterday just after the change. The HFOV was finally silent and the lights are off! It is now removed from her room and no longer waiting "just in case." The glass partition is closed again so we have more privacy.


  1. Simply Awesome!!!


  2. I am so happy for you! Natalie is a little warrior baby!!! She is gonna be something when she grows up!

  3. Blessings to your family. That picture just made my day.

  4. It brought tears to my eyes seeing that picture of you holding Natalie! Natalie is indeed destined for great things. As always, prayers continue daily for all of you!

    Amy J posting from her husband's computer!

  5. Grettings from Poland !! Everything will be ok. Prayers for You!

  6. I just wanted to tell you to stay strong and to NEVER give up!!! My son was in the NICU/PICU for 289 consecutive days and has been home now for almost 2 months( with 2 readmissions for 2 days each) He is a twin and is trached home on O2 during the day and CPAP at night. HE IS AMAZING!!! The doctors told me to abort at 18 weeks and I refused now look where he is !!! STAY STRONG!!!!!

  7. I was just about ready to email you to see how things were going and boy oh boy have you had ride. Sounds like things are bumpy, but also exciting!!!!!!! I am in tears, I just cant believe you couldnt hold your little girl for so long and am beyond thrilled for you. GO guys just inspire me everyday, you are one of the most positive and persistant mommies on the planet. Make sure the stay on the nitric....our doc said they may keep thurston on it even when he switches back to nasal cannula. Talk soon and just love hearing about all of this great news!!!!

  8. Oooooooooohhhhh Jenn!!!

    I am beyond words to say how happy I am that you finally have Natalie in your arms again. Also so relieved that she gave you some discharge before they started feeds again. I so wish we had gone slower with Timmy...

    Also wish they could trach Natalie already. It made such a huge difference for us. As hard as it is not to hear your baby cry or just the thought of that surgery, it made me cry to think that he could finally move his head however he wanted and I so desperately want that for both you and Natalie.

    You are both great warriors. You are loved and prayed for by so many!

  9. loved the pictures.
    and I am so happy you were able to hold her!

  10. I went through and read all of your blogs and I am praying and thinking of you and your family every day! My little boy was NICU when he was born, and I only know a fraction of what you are going through, but I connect in a sense and want to say that your little girl amazes me in every post!! What a little fighter! I just know God is laying his hands on her and giving her the strengh she needs! I am so glad for your great news this week! :) God Bless You ALL!!!!