The real work begins

I'd like to first start by quickly talking about our experience in Pittsburgh. I would absolutely like to say that West Penn is an amazing hospital - they saved my brother's life 27 years ago after he had a stroke. When we talk about what happened in Pittsburgh, we do not want to lump a whole hospital's staff together when really it was a feeling and an attitude about/from ONE doctor. I was given this doctor's name from the labor/delivery at West Penn as been the "high risk" doctor there. From the start the office staff seemed hassled about scheduling my appointment and the urgency that we were stressing. However, I was schedule, I traveled to Pittsburgh, and my mom and Dave took me to my appointment. The ultrasound tech was very nice and she did an excellent job. Then the doctor came in... he seemed less than interested in my reasoning for wanting to come to Pittsburgh and even less interested in what any other doctors had said. He spent at least 20-25 minutes ultrasounding me himself. This whole time he did not speak unless my mom or I asked him a question. When he was finished we went into an office so he could talk to us. I don't want to rehash all the details of the time that we spent in the office, but the bottom line is -- he did NOT want to take any recommendations from my doctor in Louisville, he had no interest in monitoring me or providing me with any kids of medications (including steroids that will boost her lung development), he told me to go home and if I want I can come back in in a week to see if her heart is still beating. Yes, that is why I left Pittsburgh in such a rush! He had no interest in being proactive in his approach to save my daughter.

BACK TO LOUISVILLE

John imedietly called my Perinatologist's office in Louisville and gave him a breif summary of what the doctor in Pittsburgh had told us. He reinforced his proactive attitude and his willingness to fight for Stella. He got us in for the next day, so he could get his own measurements of her (a week after the original appointment) and then he reported that he was going to admit me. I know that many of this is a repeat of what John had already posted, but I wanted to be clear about our whole approach. It was ONE doctor in Pittsburgh, but even though there are more amazing doctors at different hospitals our urgency to get Stella the correct care brought us back to Louisville. Wonderful, amazing, Janice road warrior drove me to Louisville where I saw the doctor and was admitted last night.

FINALLY WHERE WE NEED TO BE

Dr. P was very clear with us that we are not to expect the best, as her condition is very serious, but that we can certainly wish, hope, and especially pray for the best because that is what he is going to do. Stella has severe inter-uterine growth restriction. There are little ones with IUGR who are only about 2 weeks behind in growth and this happened in the early 30 weeks. These guys may be born about 5 weeks early but weigh as much as 4 or 5 lbs. My little one is 4 weeks behind and started her growth restriction before 20 weeks (which is really early). She will most likely be delievered (by C-section) between 26-27 weeks (meaning her development will be that of a 22-23 week old and we will be lucky if she is a pound).


Do we need a miracle? YES But God performs the most awesome miracles everyday! Why would we ever count my little Stella out as a possible miracle baby? We aren't!

SO WHAT ARE YOU DOING, SHANNA?

Last night we got some disturbing news from Dr. P, that her heartbeat is bouncing up and down indicating that the cord blood flow may be being restricted. If this continues we would have to deliver, otherwise she will suffocate in there. At 10oz she would most likely not survive and pass fairly quickly if we took her now. He put me on constant monitoring, which has proved difficult because not only is she so small and it's hard to catch her heartbeat but she is a mover and shaker! She likes to bounce all over the place hardly staying in one place for long. Anyway, after only sleeping an hour at a time, in a very uncomfortable position doing my best not to move it was reported to me this morning by my nurse that her heartbeat measured steady most of the night. We won't know until Dr. P comes to check in how good of a sign this really is. I've also had two steroid shots, antibiotics, and a constant IV fluids drip.

I'm still on constant monitoring and for most of the morning I was in a position where I couldn't do anything but stare at the tv and not move even my arms. The nurse and I recently got her and I in a position where we can keep her on monitor and I can type on the computer! :)

I think that's all I got in me today. Again THANK YOU for the support and prayers. This is so amazingly difficult that I could never fathom in my life that I would have to go through this!

Love,
Shanna and beautiful Stella

PS - I'm in Norton Hospital in Louisville KY... I keep forgetting my room number but I'll get it up here.

Roadblock

Going to try to make this fast because there is so much to do. First and most importantly, Mom and baby are doing well physically (but Mom is frustrated, as am I). Shanna was seen at West Penn Hospital today by another specialist. Unfortunately for us, he (and this supposed "family friend" that runs the NICU - and broke his word to us) were nowhere near as compassionate or interested in going the extra mile to help our situation as our previous specialist was in Louisville. The way it was summed up to me is that the West Penn staff basically ignored the advice given to them in Shanna's file (by a specialist that has TAUGHT neonatal care as a professor at the University of Louisville for 18 years) and had a "what do you want us to do" kind of attitude.
So we are left with two opinions...two choices. Both hospitals are top-grade (level III) NICU units. One choice involves staying at West Penn with a crass, reactant specialist who is only going to admit Shanna when something is wrong (and potentially too late), or going to Louisville where the specialist is interested and passionate about giving Shanna and Stella constant, proactive care. I love my family and close friends in the 'Burgh, but this is an easy decision. Janice, being the great big sister she is, will drive Shanna to Louisville first thing in the morning and I will meet them there in the afternoon. This is a decision that Shanna considered before going to Pittsburgh because she liked the specialist. Chalk it up to a "mother is always right" and go with your first instincts.
Is it rational to drive your wife 10 hours home and then have a family member drive her 6 hours the other way? Of course not, but we have one priority and one priority only here. We are going back where we should have gone all along. Louisville it is. We'll keep you updated.
There are so many of you that have offered help, support, and prayers. I want to let each of you know that I thank you and I do appreciate your kindness. I simply haven't had the time to let you know how much this really means to me.

Road trips, thoughts, and Stella

John and I of course talk a lot while we are in the car together, but after spending so much time together the past few days we couldn't help but have large amounts of quiet time. Surprisingly my thoughts only produced tears a few times... once when I felt overwhelming love toward my girl and another when I was reminded that Stella means "star" in Italian and was told to "let my Stella's light shine." I'm in the hotel in Cincinnati (halfway from Murray to Pittsburgh), relaxing, waiting for my wonderful husband to bring me dinner. I wanted to hop on Stella's blog and personally THANK everyone for their good thoughts, love, and prayers!!

THANK YOU!!

I'm not an optimistic person, but I feel so confident that my Stella girl will fight, fight, fight! I believe that these good feelings and confidence is coming from all the prayers that we have been receiving. Please continue them, we sure do need them.

Good night and God bless!

What we know so far

Many of you may have already received this email, however I may have missed some. John and I have decided that starting a blog is probably the best way that we can inform and update people on her condition. I also don't want to hide anything or keep anything a secret - I need the support right now!

We will be leaving for Pittsburgh tomorrow - taking the drive over two days as advised by my Perinatologist. We are planning to arrive in Pgh on Saturday and I have an appt with a high-risk Dr. at West Penn Monday.

STELLA'S JOURNEY STARTED 3 WEEKS AGO...

At Stella's 20 week ultrasound she was measuring 4 weeks small. The Dr. told me to try and gain weight and that we would re measure her in three weeks. That appt was Tuesday (the hardest day of my life - so far). At that u/s the tech showed us a foot that was supposedly deformed, reported that she had not grown, and just seemed generally concerned. Stella was curled in a ball and was not moving very much. John and I could barely look at the screen. The Dr. came in and told us that he would set up an appt with a fetal specialist in Louisville for the next day. Yes, we live so far in the sticks that we have to drive 4 hours to get to a decent Dr!

Tuesday night was unbearable!!! I didn't sleep and had several panic attacks.

Yesterday we made the 4 hr. treck up to Louisville to see Dr. P. His office is full of newspaper articles about record breaking premies that he has saved. I started to feel a bit better. We had another u/s and even before the tech could say anything John and I knew that Stella just looked a little better. She was punching and kicking, moving all around, so much so that the tech was finding it hard to get the measurements. But she did and Stella is still measuring 4 weeks behind.

Dr. P comes in, takes the wand and starts looking around himself. He told us that she is severely growth restricted. My placenta is very small and instead of having a three vessel cord she only has a two vessel cord. He informed me that there were several reasons this could happen - however, I don't really fit a lot of them... smokers, drinkers, diabetics. So he said that I will have to have an amino to rule out chromosomal abnormalities. Then as he is still looking at Stella he sees an extra gestational sack... Dr. P believes that Stella had a twin. That twin did not even make it to an embryo, but that the sack is taking up room in my uterus causing the placenta to be small.

I still had to have the amino - which is HORRIBLE!!! Because they still have to rule out chrom ab. So what do we do now??

Dr. P wanted to put me on hospital bed rest to be monitored right away. However, I asked if I could go to Pittsburgh to do this so that I could be close to family. Since Pgh has top notch hospitals he said yes. We are in the process of getting ourselves together to go home so I can be monitored at West Penn hospital. The odds are that Stella will not make it in utero past 28 weeks. That is the reason that I have to be monitored in the hospital. As soon as the placenta stops working - which it will bc of her condition - she has to be taken right away!! If she can hold on one more week to 24 weeks she has a 15-30% chance of survival, 28 weeks 90% chance.

Please pray for my little girl!! She is a fighter and I know she just wants to fight - as she was caught yesterday punching the placenta like a punching bag.

I will post as much as I can... as I found with my running blog, blogging helps me release feelings! This is going to be a difficult journey.