Monday, June 21, 2010

Monday Morning

We only had Dr. D'Angio for the weekend but really liked his approach. They did attempt reintroducing her nebulizers on Saturday and it was a disaster. Steve went for an afternoon visit and found Natalie in distress. Her CO2 was climbing past 100 and no one could figure out why. Daddy piped in with his concern about the inline nebulizer and it was a light bulb moment for the staff. The nebs were pulled and Natalie showed improvement right away. Dr. D'Angio did come up with another idea. It is a nebulizer usually given to kids with cystic fibrosis. It helps to thin secretions and make them easier to move out. Because it is only given once a day and the oscillator only has to be broken into twice-once to put it on and once to take it off she tolerated it very well. This was just added yesterday so it is too soon to see if it will become part of her normal drug regimen.

Saturday night I braced myself and called for the bed time report. Natalie was having blood sugar issues which has never been an issue for her. She is now completely off the steroids and there are no other meds that should be causing blood sugar issues. She was also at 100% O2 for no known reason. I just broke down. It is so hard to face bed time when she is not doing well. I went outside to clear my head (not so peaceful with my fun loving neighbors partying in their yard but I needed space to cry where Annie wouldn't hear). I cried, gave myself yet another pep talk and went to bed. A few minutes later the phone rings and it is U of R. I was numb-had things turned so badly that they needed us to come in? No, her sweet nurse did not want me trying to sleep with so much worry. She said the last blood sugar was good and shortly after testing it Natalie began to gag. She suctioned her and pulled out a thick plug of mucus. Her sats immediately shot up and they were able to wean her O2. Siiiiighhhhhh.....

Steve is not having much luck in terms of birthdays, Father's Day, etc.

Yesterday (Father's Day) Natalie was having a tough time in the morning. She was up at 100% and no one knew why yet again. This was when the new neb was tried and she seemed to have an immediate response. Her O2 dropped down to 70 but then bounced right back up after 20 minutes. The nurse got her onto her belly and things settled down. We had to take turns going into the NICU since we had Annie. I went first so I could leave his Father's Day card in her crib. Her nurse was all smiles-Natalie was down in the 50's for O2 and had been resting comfortably. The neb and being on her belly were a great combination. I spent a long time staring at the back of her head (it is a very cute back of a head and I can seriously stare for hours).

I was telling the nurse about her eye exam to rule out fungus balls and she said "Oh! She had that Friday. Everything is fine." The doctors were changing service on Friday night so I suppose that it why we hadn't heard, but I am still bothered that we were left anticipating it all weekend when it was resolved. WONDERFUL news that her eyes are not involved.

I left the NICU with Natalie having great numbers and was so happy to send Steve in. He arrived and the nurse painted a much different picture for him than she did for me. He left bewildered that the nurse felt so negative when everything else told us Natalie was pretty stable. This left the rest of our Father's Day in a depressing funk.

Her white count has gone down from 29 to 19. Her CRP (that is a general indicator of inflammation) is higher though.

Dr. Pryhuber is back on service today and is concerned about the CRP. She has ordered another set of blood cultures and a fungal blood culture. I am sorry for Natalie getting stuck again but also glad to see they are being cautious.

She also wants to start ramping up Natalie's feedings. This is a great relief to us. She is at 3 cc and hour now and as long as she is tolerating her feeds will be going up 1 cc every 8 hours. Good nutrition is incredibly important for babies with BPD so this is a very happy development. Here is hoping Natter's tummy can handle the food despite being on morphine.

We hope to meet with Dr. Pryhuber in the next day or two and get her perspective on things.


  1. What a rollercoaster it sounds like this weekend was. I hope the new nebulizer helps keep her numbers looking better.

    Bethany and Christopher

  2. Natalie and you and Steve and Annie are in our prayers.The hospital staff and their perceptions, knowledge, instincts, abilities, everything are in our prayers as well.
    Carolyn and Jerry

  3. How frustrating! I hate that you can get such vastly different information from different people and go from high to low and back in no time!

    Hope all the cultures come back clear and vent settings continue to drop!

    Happy 2-months (and 1 day) to Natalie!

    Hugs, love and prayers headed your way!

  4. I have been following Baby Natalie since April...I worked with Grandma Karen at Excellus...I just wanted to tell you all how incredibly well you are doing. Hold on to each other, savor the sweet moments. We will keep Natalie and her family in our daily prayers.
    ~Lynda Baumer

  5. Thinking of you guys. Heres to an amazing Wednesday! xo