Wednesday, April 14, 2010

Stress and Nonstress

Today we are halfway through April and I am starting to wish I could slow time down a bit. As anxious as I am to be paroled and get back to my life I am not ready to face the delivery of Baby Girl. It seems the whole floor is feeling the pressure of it. I am lucky to have so many nurses who are committed to this baby and her outcome. It is clear how much people want the best for her.

Yesterday Steve had a rare lull in his workday and was able to stop by the hospital. This worked out well for two reasons-the hospital cafeteria was hosting a jazz club event and Baby Girl Tee required some extra attention.

Our sweet girl has been slacking on her NSTs this week. She should have two accelerations in 20 minutes but lately it takes her 40 minutes to an hour. The first day or two of this I wasn't overly concerned but now that it has been four days straight I am worried that it is a trend. Yesterday she outright failed for the first time. It was a relief to have Steve here as I was growing nervous. When a baby fails to have a reactive NST the next step is a biophysical profile (BPP). You can get a total of 10 points but going in with a failed NST means we were already starting with an 8/10. If the score drops down to 4-6 the doctors have to start evaluating whether or not she is better off being delivered.

There was a delay in finding an ultrasound tech so we ran away to the jazz lunch. I was under the impression that there would be live music but it was a CD. Still more music than I get most days. The best surprise was that the food was not prepared by the cafeteria-it was all local food vendors. All you can eat without spiking your blood sugar! There were an impressive amount of vegetarian selections including a wonderful vegetarian gumbo. I was the only patient there (at least the only one sporting a blue gown) but it was SO nice to have a diversion.

Baby Girl clearly loves vegetarian gumbo because she rocked the BPP when we returned. We actually saw practice breathing for the first time. You wouldn't think a moving diaphragm would be adorable, but it really is. She also squeaked by with just enough fluid to pass and had plenty of good movements. Her little frogger legs are looking chubby. As we suspected she is also very much head down now. So she passed the BPP with 8/10 and we made it through another day. Right now I am waiting for her next NST to start and hoping she peps up for it.

Today one of my favorite nurses said she spoke with the attending regarding the slow NSTs and while the doctor is concerned it is not concerning enough to warrant delivering a baby at 32 weeks. I agree but I also hate sitting here waiting for something else to go wrong. I also hate that my doctor will speak frankly with the nurses but not with me.

I have decided that after the delivery date is set I will not be talking with the NICU again until she is born and we know exactly what we are facing. We met with a neonatologist yesterday as we are trying to determine the best timing for delivery. These doctors can shred hope with great efficiency. I have started to challenge their prognosis openly. The truth is, this hospital does not see many women with pPROM this early who go on to make it this far (in the recent memory of the nurses there has been one in five years with a similar scenario. Her baby lived). My impression is that they are basing their opinions on the very few cases they have handled (which I consider to be anecdotal and not statistically significant) or on studies done in the 1980's. I have found many contemporary studies that suggest much better outcomes with current NICU treatments. It seems we are also being lumped in with women who have low fluid for other reasons, such as kidney complications. While there may be some similarities with lung development issues it is still a very different diagnosis. Now when I am given an overly negative outlook I ask specifically what they are basing their opinion on. I understand we have very good reason to be concerned, but we also have more reason to hope than they allow. I remind myself every day that doctor do not know everything.

For what it's worth, Baby Girl Tee actually does have a first name, but my husband has developed some superstitions and does not want it shared before she is born. We are still working on the middle name and Annie has given us some interesting suggestions (including the ever popular Cinderella). She still wants to name the baby Emily but Steve is firmly set on the name we chose.

Annie is, as always, my walking ray of sunshine. Seeing her in the evening lightens the stress of day. The other night we were in the chapel and I read the Lord's Prayer to her. A few minutes later she wanted to read it to me. Her version goes like this "Please give us our lunch as fast as you can." Amen!


  1. Jennifer-- I know how frustrating it is to listen to the neonatologists. Clark's doctor came in while I was in labor and told me that she didn't think he had lungs. I said "well, I've been praying and have faith that he will have lungs." I'll be really honest that up until then I was scared and didn't know what I believed...but then when the dr challenged me, it's as if I knew by intuition.

    That's something that I'm sure you've started seeing too, your intuition is a huge deal for your baby. Throughout our NICU stay I had to rely on mine every single day. And it would let me know when to be on my was always right.

    I believe that your body and the baby will know when it's time. As scary as it is to think about having a 32 weeker, 32 weeks is HUGE! As always, you are in my prayers. Hang in there.

  2. Jennifer,

    I applaud you in your determination to challenge your doctor's negativity. I truly believe that faith and hope can work wonders and they shouldn't be taken away from you. As much as I would love to know Baby Girl's name, I totally understand Steve's superstition! I'm glad you enjoyed the jazz lunch yesterday. It sounds like the diversion did all of you well! Prayers continue for you all.

    Amy J

  3. 32 weeks is HUGE and I am praying right along with you. I can tell you that even with all the fancy medical technology that is available and all the crazy statistics...doctors DO NOT know everything.

    They couldn't find my daughter's left kidney even though they looked for it all the time before she was born. HAHA...she has both of her kidneys.

    They also said that if she survived her heart surgery she would die from kidney failure...DOUBLE HAHA to them...she is 7 months old and has survived 2 open heart surgeries!

    I love our new doctors and even though they share their opinions, they also know the miracles we have seen and don't have the same negativity our old ones did.

    Keep the faith and feel all the blessings you have been given. You know she is doing good and I believe with all my heart that she will show them about faith when she is born...and again when she is 30 and getting married!

  4. JT -- words simply cant express how strong I think you are and how amazing you are. I am in awe at your strength and your courage. I am shedding some tears because that is what I do...your ray of sunshine will get you thru this. we are all praying for you. always.

    I like Annie's choice for a name -- Anya's choice is Fiona however she is asking for a baby brother.

  5. I am so glad that you are not listening to the doctor's gloomy forecast. I have been following PROM moms for the past couple of years and all of those babies that have made it to 30 weeks have survived. Some have had extended NICU stays but they eventually outgrow their problems. I don't know why the doctors are always so pessimistic. I guess they just aren't familiar with the situation so they expect the worst.

    That's why I stay on FB and contact all the PROM moms I can. PROM moms need to know that their babies can make it! Remember-My daughter and I were both told that our babies had NO chance and both of our sons are perfect. One day you will be able to give hope to others too! I have faith that everything with Baby Girl Tee will be just fine!

    Hugs & Kisses!
    PS-I think Cinderella makes a lovely middle name. :-)