We are the Spinda family (John, Shanna & Stella Mae) from Murray, KY... on February 1, 2011 at 10:27am our beautiful baby girl, Stella Mae Spinda, was born at 26 weeks gestation. She weighed 12.34 oz and was 9 in long - Stella suffered from Intrauterin Growth Restriction (IUGR) which caused both her extremely small size and her being born premature. Stella spent five days in the Neonatal Intensive Care Unit (NICU) at Norton/Kosair Hospital in Louisville, KY. She passed away late on February 5, 2011 from complications of her extremely small size. This blog was started when she was 23 gestational weeks old and we discovered her condition. It's original purpose was to keep family and friends updated on Stella's journey - we now hope to use this blog as a way to continue Stella's journey by honoring her memory and also as a way to support others who are struggling with infertility or have lost a pregnancy or baby.

Monday, January 31, 2011

Winning Battles

Tomorrow, Stella will be 26 weeks old. When we arrived in Louisville, our specialists estimated she would be born at 26-27 weeks. The past two weeks since we've been here, all we could think about is the hope that Stella would reach a large enough size to be viable in the NICU. When we arrived, she was estimated to be 10 0z. Two weeks is needed to truly determine if a child is growing due to inaccuracies. So our ultrasound today was a huge moment of anxiety and hope. According to the measurements, she has gained up to 12-13 ounces (350-370 grams). We were told recently that we would be lucky/happy to reach 350 grams. We'll she did it. Its a small victory.
To clarify, development is the bigger issue over size. If a baby is developing (e.g., brain, lungs, digestive systems) and is large enough (to fit breathing and feeding tubes, etc), that is better than being large enough to be in the NICU, but not having the "tools" to survive out of the womb. I hope that makes some sense. In sum, we are happy for winning a small battle, which is getting her to a size that (barely) viable. We can only pray her "tools" are good enough to make it when she comes out, which should be in the next 10 days or so, from what we are told.
A few members of the staff have used the "war" analogy to describe this time, as in "you have to be ready for battle at any time, any day, because the doctors may make the call to deliver at anytime". It seems cliche. Actually, it is; but what the heck. But I am going to go with it and take it a step further and use the "battle" within the "war" analogy.
Right now, we are all about winning battles. Some battles are won in losing wars, some battles are lost in winning wars. Some battles shift the axis of a war and alter it completely. I am hoping today's victory is one that shifts the balance towards Stella. We've been winning the small battles daily with her great scripts (30m heartbeat monitoring 2X a day). We've also been winning with our ability to keep it together as parents in the face of so much adversity and anxiety (although we both have our moments). We are winning in that we both have enhanced our understanding of God; me more than Shanna. I had yet to have a watershed moment in my life that the Lord came to me, but he has and I am thankful. This is more than convenience and will persist no matter the outcome he has determined for Stella.
I want to thank you all so much for the prayers, support, love, and time. We are thankful. I want to especially thank my sister Christine, who traveled 8 hours each way from Raleigh to be with us this weekend in Louisville. I also want to thank Brian and Rachel for coming by when they were in town yesterday. You are great friends and we are happy to have you (and the unreal ice cream!).
Who knows what the outcome of this war is? All I know is I am ready for battle daily, and I feel like I have a great army of supporters in each of you that read this or send us your love in some way. We need it, the time is coming where we will be tested. We are thankful more, now than ever.

Thursday, January 27, 2011

NICU Tour

Last night I broke down - all I could do was hold on to John and cry. The evening nurse heard me and came in to see if there was anything that she could do for me. There wasn't - but it was so nice of her to check in. In the morning one of my favorite nurses came in, sat down beside my bed, and asked me if I wanted to talk. The evening nurse had told the morning nurses that I was upset last night. Normally this type of invasion of privacy would have bothered me but I find it so sweet and touching. Theresa (the morning nurse) and I talked for a while before she asked me if I had toured the NICU yet. We had not and I was very anxious to see how things go in there. She set up a tour for us and walked us across the pedway to the Children's Hospital. Once we were over there I could barely breathe. There were colorful walls and cheerful nurses but I knew that each and every one of those little ones were in the fight of their lives. The nurse that took us around explained protocols for visiting and having other visitors come in. She showed me the lactation room where you can go to pump and then give them the breast milk to tube feed to baby. We walked around the different pods while she explained which each one of the tubes, wires, etc. are for in the baby. She showed us the "giraffe" which is most advanced incubator. Just looking at the little one in the giraffe holding on for dear life, with all the tubes coming out of him was really difficult. I needed to take a minute to cry and let it all sink in. Once I calmed down she continued the tour, showing us two new renovated pods. These pods are much more homey - each baby gets their own "room" that you can decorate, there is a sleeping bench and a recliner in the room as well. We were informed that the smallest babies are put in these rooms, so hopefully they have a bed open when Stella is born.

That NICU visit was Thursday and I have just now been able to finish writing about it (Saturday evening).

Thursday was a pretty uneventful day other than visiting the NICU. I did get an amazing package from a wonderful sorority sister - thanks Sarah!! In it was a beautiful blanket that she made Stella, a book, a framed prayer, candy, pens, and a journal. The colorful paper with the thoughtful gifts really helped to bring a smile to my face. No change with Stella, my mood was a little lower than the day before but we finished Thursday with a wonderful prayer to St. Jude (that my mom had sent me in the mail).

FRIDAY

We were sure that Dr. P was going to get Stella's weight at Friday's ultrasound, but he told us Thursday night that he wanted to wait until Monday. I guess the best time to get a good determinate if they have gained weight is 2 - 3 weeks (and it will be 2 weeks on Monday). He said that it doesn't help to "cheat days." Friday's ultrasound came late, which kept me in nervous knots all day. Once in there she gave me a good scare by not moving at first!! She was good and curled up in a tight ball. The tech gave her a couple good shakes to wake her up and she started kicking back. The tech got her so agitated that she did a nice roll on her belly and took some practice breaths with it. Her u/s looked as good as we can hope that it could.

The reality of Stella being born more than three months early is starting to sink in. The first night in the hospital both Dr. P (perinatologist) and Dr. Cohen (neonatologist) told us that she will most likely be delivered between 26-27 weeks. After that time she may suffer brain damage or even death inside me. As the 26 week mark is drawing close I'm getting more and more scared. The uncertainty of when Dr. P will decide to take her and then how everything will happen is killing me. He was great today when I asked him about it, but even he can't give me a definite answer on when he will decide to take her. He said that he has to see her u/s Monday and make a serious judgment call. If my girl has not grown and is still only 10oz her chance of survival drops significantly below the 60% that she was given at the beginning of the week.

I don't think I'm ready for this! I don't think that I'm ready to deal with the possibility of losing my daughter. I'm not even sure how you get ready for something like this. I'm not ready for her to be away from me. Right now I have her in me where I feel I can keep her safe and sound. Once she is out I won't even be able to hold her. I cry just thinking about only being able to sit beside her and hold her hand or foot. How do you prepare yourself for that? How do you prepare yourself for the possibility of going home without your daughter?

Wednesday, January 26, 2011

Update - Jan 26th

Thank you all again for your continued prayers and support. Our ultrasound days are MWF. Today's was good, as have been the past few. This means blood flow from placenta to Stella is good and that all her little, little vitals are working well. Infact, she actually took some practice breaths both times (but especially Monday, we had to coax her today into a few little ones). Most importantly, it means Stella can stay in Shanna and (hopefully) keep growing and improve her chances.

Yesterday, we hit the 25 week mark. Our Parientologist, Dr. Pietrantoni, informed us that this puts Stella at 60% survival. But to me, this means little, I hate to say it. Its a broad statement of odds and each situation is different. I am hardly ready to celebrate this news because out of 10 parents that have children born at 25 weeks, 4 lose their child. What I am excited about is the ultrasounds that indicate Stella can be in Shanna, her best incubator. Each day not only increases Stella's odds of survival in general, but of a strong, healthy life. We find out Friday if she has grown in estimated size (although we've been warned the ultrasound estimates of weight can be inaccurate). One thing is clear, she is sure developing, which is even more important than size (not to downplay that too much). Here are a few pics from today. She yawned and gave us a good look at her hands (POSITIVELY NO IDEA why they won't rotate?!?!).






Tuesday, January 25, 2011

I was laying in my bed, on the fetal monitor, late morning/early afternoon on Sunday. I had just gotten off the phone with my mom, who had encouraged me to call the Chapel and see if a Priest could come and give me communion. John was not yet here and I felt very annoyed with my mom pressuring me to call for communion (even though I really did want it). Then I heard John's squeeky shoes coming down the hall - however, there was a knock at my door and John never knocks. In walks a priest with John right behind him. I just assumed that John had called him or saw him in the hall and asked him to come visit me. John turned my TV off and the Priest proceeded to read the gospel, do a quick homily, give me communion, and pray with John and I. After he left I asked John if he called him - he reported no and thought that I had. I asked the nurse if she had called him - she reported that he came to her with my name on a clipboard asking if he could come in and see me. I figure that they have to have somewhere in my chart that I am Catholic, but I don't remember ever writing it or telling anyone. I've never felt closer to Jesus as I did when I took communion Sunday. I knew that by taking the body of Christ, he was giving me the strength that I need to get through this. I am aloud to take wheelchair rides and walk around the floor a bit, so I will be able to go to church in the Chapel tomorrow. :)

LOVE AND SUPPORT

Many of you have texted, emailed, and/or Facebooked us and we very much appreciate it!! I am still not able to talk on the phone with anyone but my mom. I'll text or IM you all day - I just feel like I may breakdown if I hear the sadness in anyone's voice. I can not break down right now! This journey is just beginning for our family and like my doctor said yesterday - this is the easy part. The hard part is going to come when she is out and in the NICU - we have been told that all preemies have a "honeymoon" period of a few days. They may look like they are going to breathe on their own, fight like hell, and come home earlier than expected... then they crash. This up and down continues until they either lose their fight or are stable enough to come home. This whole scenario scared the crap out of me. I question my strength and my ability to make it though this. My plan is to lean on my God, my husband, and Stella's will to live. Please keep the texts, emails, FB post, and especially prayers coming!! I feel the power of your prayers giving me more and more strength everyday.

STELLA MAE THE FIGHTER - STELLA MAE THE DIVA

I'm sure you are all dying for an "update." Unfortunately we are playing the most nerve wracking waiting game. I'm off constant monitoring - because her heartbeat has stayed fairly steady - and I'm now being monitored for 30 minutes every 12 hours. Stella has a reputation among the nurses as being elusive... I can feel her moving every once in a while, but as soon as the nurse puts that monitor on me she starts KICKING and MOVING! They find a good heartbeat that picks up on the monitor, then we hear what sounds like a thunderstorm at the same time that I feel a swift kick to the area of the monitor, and she is gone. That thunderstorm sound is her moving around in the fluid. A 30 minute monitoring usually takes about 20 minutes to even get started, then the nurse leaves the room thinking that she is going to cooperate, only to return in a few minutes to try and find her again. Eventually either Stella or the nurses give up - usually the nurses. But so far they have been able to get enough of a monitor to show that she is continuing to have a strong heartbeat.

We get ultrasounds every Monday-Wednesday-Friday. This is done to check a few things
1. The blood flow from the cord to her. This is the MOST important thing that they have to monitor. The reason is that my placenta is a "bad" placenta - it did not form properly, may have abrupted early and caused a blood clot in my uterus, and will eventually stop pumping blood to my girl waaay before it should. As long as the u/s is showing good blood flow she is safe in there. But as soon as it starts to show a major slow down or even a minor reversal in blood flow --- she NEEDS to come out!!!
2. They check my fluid levels. Women with IUGR can have low fluid, which of course can become a problem for baby.
3. Her movement - if she is just laying there, not moving very much it means that she is not feeling well. Even if the Doppler shows good blood flow she may not be getting enough oxygen. The fact that she is moving so much is a great sign and has also caused her to have a reputation among the nurses as being a fighter!
4. The last thing that they look for is "practice breathing" - this is when the baby "breathes" in the fluid in an effort to get ready to be on the outside. Most babies to this by 32 weeks and can start doing it as early as 20 or so. Because of her size, I was told several times by the u/s tech that she may never do this before she is born. They still have to look for it, but it's not a major problem that she is not doing it. However, as many of you may have seen on my FB status yesterday - Miss Stella was caught practice breathing!!!! The tech closes up on her belly, watches the lungs and lower abdomen very closely for movement. You can clearly see the heartbeat and that movement and then yesterday we could see the lungs and lower abdomen slowly shifting up and down. THAT IS A PRACTICE BREATH!

Yesterday when Dr. P came to see me he was just as happy as we were to see that she had done this. He continues to stay very positive, tell us to pray, but also pulls us back into reality and remind us that her condition is very critical. However, yesterday he squeezed my arm and said "I don't know why, but I'm very optimistic about this girl. I don't know why, but I really am."

We are attempting to remain optimistic as well.
God bless!!
Shanna and beautiful Stella!!

Friday, January 21, 2011

No news is good news...

Hey everyone,
Its been a few days since we've been on here, but thats not a bad thing. Things have been pretty quiet here. Shanna is resting comfortably (now) and I am feeling good and positive overall. We are waiting on our Friday ultrasound here this morning.
To recap briefly, Wednesday we were admitted, got monitored and things looked really bad at night. The belief was that the cord blood may be having issues, causing birth quicker than desired and lowering her odds. But, with constant monitoring (Shanna basically couldn't sneeze without moving the ultrasound off Stella), things were looking better Thursday and so was the prognosis for Stella's birth. Last night, things again looked good and quiet overall. In other words, as we were told to be prepared for, its a big-time roller coaster ride.
I never cried like I did Wednesday when a sobering reality wsa sinking in. But I can say that I had a great day yesterday emotionally. Similarly, Shanna is doing well (after being a wreck Wednesday night like me) and having her moments, as I still am.
Here is what gets us through (at least me, I just tell Shanna), "Stella is alive today". Every day she is alive, she should grow, especially with the great care here in Louisville. Every day she grows, her odds improve.
But here is what this week has reminded me of: (1) You can't predict the future. If you told me Sunday morning before I left Pittsburgh how this week would play out, I would have been shocked, (2) Things can turn on a dime, anytime, anyway. We could walk into that ultrasound into grim news today. I am trying to prepare myself as much as I can for the swings that seem inevitable. (3) My relationship with my wife is stronger than I even knew it was. We keep each other together and are going to face whatever happens here; good or bad. (4) I have a special relationship with my daughter Stella, who is barely 6 months old. I've seen her, I've seen her fight, and I know she is giving it her all. Shanna and I have memories of our excitement for her, reading to her, talking about her growing up, and so on and so forth. NOBODY can ever take that from us, even if something awful happens here. We are just faithful that these are the beginning of the great times with Stella.
I am in a good place mentally. I even got my classes rolling online. I got faith in everything right now it seems and that feels great. I am trying to be strong for my wife, who is doing great. Just keep praying and hoping that Stella keeps doing great.
Thank you everyone for your continued support.

Wednesday, January 19, 2011

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).


D
o 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.

Monday, January 17, 2011

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.

Friday, January 14, 2011

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!

Thursday, January 13, 2011

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.

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