34 Week Appointment

(heartrate-152 bpm)

I had another OB appointment this morning, and the doctor seems "cautiously optimistic" that Leah fits the profile of babies that could potentially survive birth and beyond for a bit longer than merely minutes. Of course, babies in her profile don't ALWAYS live, but she could possibly be one of the ones who do. It just depends on so many factors that no doctor could yet know. At least he's being positive and hopeful rather than stricly medically realistic, and pessamistic, I guess. :)
At today's appointment, he revised his guess to being like 50%-75% sure Leah does have Trisomy 13, rather than the less severe diagnosis of purly genetic causes for her issues.
Our doctor also fully supports our plans to use medical intervention to address any/all of Leah's symptoms upon her arrival, until a point where it's clear that it's just not going to keep working. I think that compared to doing nothing (comfort care), there would be a lot less guilt/regret as a parent, knowing you did everything possible to try and help your baby make it....instead of being left to wonder...."If only we'd tried...."

We had a tour of St. Vincent Hospital's maternity ward on Sunday, which made our due date feel all to close, and Leah's condition all too real. I've hardly let myself think about the whole Labor/delivery part. It will be so different from last time, with all the added anxiety and uncertainty attached.
It's definately a plus for a trisomy baby to have a short and fast labor, so their body doesn't have to endure the stress from the contractions too long. We have decided to request a C-section if Leah is in distress during labor. The standard procedure for a baby with a trisomy diagnosis seems to be not to pursue/allow a c-section, since the baby isn't exptected to live very long. They consider it an undue risk to mom to go through labor. Many trisomy babies may not even be monitored at all during their delivery for this same reason.
Part of our decision against having amniocentesis done, is that without a complete diagnosis, we have more options available to us in terms of helping Leah fight for her life. Since the doctors are not positive as to Leah's condition, they will more easiely honor our wishes for medical intervention, rather than encouraging us to pursue "comfort care only" upon her arrival. Once she arrives, a simple blood test, taking 48 hours for results, will be able to tell of if she has Trisomy 13, and which form of it as well.
In response to my question regarding most common cause of death in Trisomy babies, my doctor shared today that it's usually one of two things. First, that these babies are very prone to sleep apnea, and with the wrong blueprints in each cell of their bodies....they simply don't get the message from their brain to breath. And secondly, with cleft lip/palate, there isn't division between the mouth, nasal and ear cavities. In addition to feeding probably, this means fluid can easily get down into the baby's lungs, develop into pnemonia, which their weak body cannot survive.

Having appointments like today, where our doctor says Leah could live even a few days puts such a glimmer of hope back into my painfully responsible plans of "trying to be prepared for the inevitable". Calling funeral homes the same week as filling out my hospital delivery room pre-registration forms is beyond hard! We're preparing to say both Hello and Good-Bye at the same time. The usual plans of decorating a nursery have been replaced by plans full of so much sorrow and grief.
However, simply knowing that God chose me to be Leah's mother brings me so much joy. He chose me to carry this very special child of God.....and carry her I will. Full of love and prayer, able to fully dedicate her life to the Lord. I definately praise the One, who's chosen me to carry Leah! It's such a short while, but also such a long road at the same time. The emotions that go along with such a task are deeper and more intense than I've every before experienced. I just bounce back and forth between trying to prepare for the reality that she might pass away during delivery, to the possibility of her living several weeks/months (which would be a miracle). Of course my desire is for more time! My most hearfelt cry to the Lord is simply for "More Time Lord." It would definately be better, in terms of feeling like I got at least some time to express my immense love face to face with Leah. Also, I pray that Luke and Kyla would get the opportunity to bond and form memories with Leah.
But how long we get with Leah is entirely out of our hands....and fully in the Lord's. It has been giving me such a deeper sense of the reality of how to live moment by moment...as well as how to give our worries and fears over to the Lord. Since I know that I really can't carry them myself, it is easier for me to not even attempt to try. He will be with us each step of the way. He will either bring healing to Leah's tiny earthly body, or she will be eternally healed as her soul, perfectly strong and healthy, enters Heaven. I also have such a deep confidence that He will bring joy, comfort and healing to our family in the event of her loss.

Here are some specific prayer requests:
** Healing for Leah's Body** and also....
1. Leah would continue growing and I would feel the reassurance of her kicks and movements daily
2. Leah would be strong enough to survive delivery (no c-section needed) and even get to come home
3.Wisdom as we meet March 5th with a Neonatologist (the doctor who'll care for Leah after delivery). She'll help us understand and become more familar with the medical terms and practices that may be necessary upon Leah's arrival
4. That Leah could natually arrive a week early, during Spring Break, as my Mom and Sister are both teachers off school and this would allow them the extra time to spend with Leah. Also, Luke's sister Callie and her hubby are planning to come down from Spokane then, and Luke's other sister Charissa has plans to leave for spring term in Hawaii on April 7th. We'd sure love to be able to have all our family be a part of Leah's arrival and celebrations of her life.
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I feel like I am trying to make plans not having any idea of which exact scenario I am truly even planning for. It's like I'm on an airplane, and I'm told I'll be moving to a foreign county permanetly, but I won't discover the location until we land. I cannot prepare as I would like by learning the language, researching the customs, food or climate. I've brought my suitcase along, but without knowing where I'm going, I was forced to bring it empty. I simply did not know what to pack! I have to trust God to provide everything I'll need!
I know that God will continue to be with us each step of our journey with Leah. Nothing is uncharted territory for my God! He knows and will supply all that I need!

Introducing Leah Grace Jarmer

We finally had another appointment back at the Perinatal Clinic on Thursday. Even with everything being the "same" as before, we felt like it was a very positive appointment. Leah is still growing - she's at the 25% in terms of size. She is now 32 weeks along (8 months) and is estimated to weigh around 3lbs. 8 oz. Her heart is still beating strong - 138 bpm, and it is so amazing to be able to see her actual heart on the ultrasound and watch it beating!
When we asked the Perinatologist to go back over with us a list of Leah's ultrasound markers that indicated Trisomy 13 - he mentioned the following things:
1. Cleft Lip/Palate
2. Brain Malformation (possibly Holoprocencephaly - he sees that the Corpus Collosum is not fully formed, and there is a gap present that is filled with fluid)
3. Leah's eyes are slightly closer together
4. Leah's feet are misshapen (often called Rocker Bottom Feet)
When these things appear together it points strongly to a chromosonal disorder - Trisomy 13 in particular. However, without having an absolute test result from amniocentesis, our doctor says it's still possible these markers are not due to Trisomy 13, but rather other causes. He shared that in his opinion it wasn't necessary to have amnio done, since we can test Leah's blood once she arrives to determine her exact condition.
Our doctor also said, that since Leah is still growing, and VERY active at 8 months - she's already beaten a good number of the odds for babies with Trisomy 13. In light of that, he is slighly less sure that it is Trisomy 13, he said maybe a 50% chance at this point. Irregardless of the diagnosis, her brain malformation is severe, and it is hard for him to predict the length of time she may be able to survive in light of it.
It is a good sign that Leah's already turned and is positioned head down for our upcoming delivery. It is still very possible that Leah will go to Heaven prior to her birth, but we are praying that God would give her the strength to survive birth so we can meet her and love her (even for just a short time).