Thursday, August 5, 2010

Be the Tortoise

Yesterday we arrived for our meeting to find that no one knew why we were meeting. The social worker had dropped off the note Tuesday and we thought the doctors asked for it, while the docs thought it was at our request. It worked out well, though, as we were going around in circles regarding our decisions and wanted to clarify some things with them. On Monday we felt confident leaving her on the oscillator. By our visit on Tuesday we were no longer so certain. Seeing her in that position is incredibly difficult and we do not want to keep her there any longer than necessary.

We took the same seats we had on Friday but the tone was much lighter. Since Friday Natalie had come down on her power and her O2 requirements. In general I would say we were all more optimistic.

After much thought and debate, we went into the discussion knowing that we do not want to leave Natalie on the oscillator indefinitely. We both felt more comfortable setting a time limit and agreed on 2-4 weeks. If the doctors felt Nat could make significant progress in that period of time, we would accept the drawbacks of the oscillator and plan on making the move in about a month. If 2-4 weeks will not give her much chance to improve then we would prepare to move her to the conventional vent now. As for going back to the oscillator if the settings are too high we are undecided. This is very hard to set in print, but in our hearts we feel that putting her back on the oscillator would not be in her best interest. I am not up to elaborating now, but it is a decision that is weighing heavy on our hearts. Life on the oscillator is just not fair for the long term, especially if she is not going to improve on it.

Many of our questions yesterday were the same things we asked on Friday, and most still had no answer other than "we are in uncharted territory." I give the doctors a lot of credit for sitting with us as we mulled things over again and again.

Ultimately, we have decided to hold still for now. She started the Viagra yesterday and it will be some time before we know if it is helping. No one wants to use the bigger drugs if we can get away without them. The neonatologist who has worked with Natty the most feels she can improve in a month and advised us to be patient. As Natalie's clinical status tends to fluctuate we will reevaluate as necessary. In 2-3 weeks she will have another echo to see if the Viagra is helping. If not then we will discuss Flolan or Iloprost. We did learn that the adult ICU has experience nebulizing Flolan and would be able to help the NICU set it up for us if necessary.

At the moment she is "up in her Os" a bit but that could just be one of her normal fluctuations. After a few solid good days we are anxious about any change in her status.

We are hopeful that Natalie will remain stable in the next month and make slow steady progress. Well, we would be thrilled with leaps and bounds of improvement but of course are realistic. Please be optimistic with us that Natalie will be in a better position next month to make the move to a conventional vent. Everyone involved wants to give her the very best possible chance to take off and fly on it. We do feel that we have made the best choice possible at this time.

In other Natter news, her feeds continue to go well and her diapers continue to offend. I am looking forward to when her stools return to normal. It seems there is still some nastiness to flush out. Assuming her feeds are still increased at the current rate she will be of the TPN (IV nutrition) tomorrow night. Whooop! I lost count of how many times we have celebrated her taking this step (oh, how naive I was the first time she came off and I assumed it was for good).

We are very nervous about the start of fortifying her feeds and I am sure her doctors are hoping we give the topic a rest. We have no choice but to fortify-she can't handle the amount of fluid she would need to get all her daily calories and nutrients. More importantly the formula provides additional minerals such as calcium. Natalie is facing some significant issues with demineralization of her bones. They are no longer bright white on X-ray (this was new information to us this week). She lost out the 3rd trimester of pregnancy, when babies receive the most amount of calcium from their mothers. She has spent a good amount of time on TPN and it does not provide adequate calcium and phosphorus because it would make the solution chalky. The third and biggest strike is that she is on a good amount of Lasix and will be for the foreseeable future. Lasix is necessary to control the fluid in her lungs but it also leeches calcium from her bones. Like so many treatments in the NICU, Lasix gives with one hand and takes with the other. Again, we do what we have no choice but to do now and will deal with the consequences when they arise.

Hopefully they can strike a good balance with her nutrition and will exercise more caution as they increase fortification. It makes us nervous as her NEC coincided with the big calorie push. While we don't know for certain that it caused the NEC we also don't know that it did not. I want to stress that I do not feel the doctors increased her calories in error as she had tolerated her feeds all along. She was well past the risky age for NEC and they had no reason to believe the fortification would be a problem. That said, I have no interest in tempting fate again.

Otherwise there is not much new (knocking on wood). Some of her IV meds are gradually being transferred to oral versions. This reduces the number of times her PCS line is accessed. Every med she receives through the medi-port requires a long sterile procedure and increases the risk of her line becoming infected. I can not stress how important it is that we do not lose her line. A double lumen PCS line is a great blessing and we are unlikely to get one again. No one wants to see Natalie endure another cut down procedure to secure a new line.

Annie is doing well. We are still working on getting her a better sleeping schedule, but like everything else it is a work in progress. Last night I commented that she had circles under her eyes and she said "That's OK. They're just circles and circles don't hurt." She is going to bed with much less anxiety and tends to sleep all night in her own bed, so there has been improvement. Annie is talking more and more about being a big sister. She still plans on teaching Matawee to walk, talk and not be afraid of bugs. The last one should be interesting as Anneliese herself is afraid of even the tiniest ant. She also guesses that Natalie's new hair is going to come in blue. Considering all her meds I would not be surprised.

Today I realized that it is August and Annie's bathing suit still had the tag on it. This poor child has not had the summer I intended for her. I finally got her in the suit and we used her sprinkler for the first time. It was wonderful to watch her play and have normal fun.

Steve and I were able to meet for lunch today (thank you Grandpa for the extra babysitting). This is the 7 year anniversary of our first date (thank you a million times over to Carole for the introduction:o) and we actually remembered to acknowledge it. Life of course does not allow for much more romance than going to Moes for burritos but I will take what I can get.

Annie is finally over her cold and can resume visits to the NICU sibling watch program. We owe a huge debt of gratitude to Steve's mother for being our on-call daycare the past few weeks. Thank you thank you thank you!!! I know getting last minute calls and later than anticipated pick-ups is, um, less than ideal and we appreciate you putting up with us. Annie has enjoyed all the bonus Grandma time and of course the pop-uh-sicles.

As always, thank you all for your words of encouragement and your prayers. This is a difficult time in ways I can not express and you really do help to lift us up. Thank you.

Look at these girls-am I not one lucky woman? I can not believe we made them. I want so very much to watch them grow up together. If we do get that opportunity....well there are not enough words for that emotion either.


  1. Again, the tears are flowing! The pictures just grab my heart, and will not let go. I am praying, hoping and pleading with God for miraculous things to happen for Natalie... she deserves it, and so do you. Lots of love to you all!

  2. I just wanted to say my daughter was put on Viagra after her second open heart surgery @6mos old called the Bidirectional Glenn operation. She was born with HLHS and in this operation the blood flow from the upper half of the body bypasses the heart and flows directly into the lungs for oxygenation. In turn this can increase pulmonary pressures and she did have a bout of pulmonary hypertension. She came out of the OR on nitric but when that was weaned she was placed on Viagra and it worked, we didnt have to go home on it like we thought we were. Please email me with any questions, I dont remember many of the specifics but if I can be of any help I will try. My email is

  3. Both of your girls are beautiful. You have a right to be proud of the job you both did in making them! I also love the blue hair comment. How cute Annie and you are!

    I am praying for all of you everday!

  4. Jennifer, I absolutely believe in Natalie's success. I know how every moment in the NICU is a lifetime for a parent facing such things, but you have an amazingly strong little girl. Reading your posts takes me back to the most difficult of days and I pray harder for you guys. I know I've said it before, but just keep putting one foot in front of the other. You guys will eventually see this through.


  5. Jennifer - I have tears in my eyes reading about your amazing family. The fact that you and Steve still manage to sneak some time away for each other amid everything in your buys lives really speaks to your love for one another. The care and thought you put behind every decision you make for Natalie is inspiring. I continue to offer up prayers daily for all of you. Know that we are all thinking of you, Steve, Annie and Natalie daily. I LOVE the picture of Anneliese in her bathing suit. It looks like she had a great time!

  6. JT.
    we love you. we pray for you, steve, annie and natalie everday.
    i believe in her. i believe in you.
    the pictures are beautiful.
    all our thoughts and prayers.
    kelly, vlad and anya

  7. I continue to pray for Natalie.