Well we start off in November of 2008. Kristina and I went to meet with Dr Kustin in Seattle. Dr Kustin is one of the most successfully In Vitro Fertilization specialist in Washington state. After a meeting with Dr Kustin he advised us, despite the many complications we faced, he was sure he would be able to help us conceive a child. So after much prayer and deliberation (mostly around how to come up with the estimated $15,000 is was going to cost us out of pocket because our insurance does not cover IVF), we decided to give it a shot. In February 2009 we started our first IVF cycle. It was full of wonderful events like driving to Oregon last minute to buy IVF drugs second hand from a wonderful couple to save several thousand dollar's in drug costs – and lots of needles, shots, daily Doctor appointments and blood draws.
In May 2009 the first stage of the IVF cycle completed resulting in 19 wonderfully strong healthy fertilized embryos. At this point in time we had gone through rigorous physical, mental, spiritual and financial strains, but we were not done yet. The next step was implantation. The recommendation was we implant fresh embryo's right away to take advantage of their full potency. So we did, and on May 23rd 2009, Jaylie's life began.
Over the next several months, we did everything any new expecting parents would do. We held off on telling friends and family we were pregnant until we were successfully past the first trimester. Then as things progressed, the Dr's assured us based upon the tests and measurements we had a healthy baby on our hands and offered their congratulations. We continued forward like any newly pregnant couple, sharing the joys with friends and family.
Kristina's appointments went off without a hitch, all the tests came back as they should, and the measurements as expected until we hit the 20 week mark.
At 20 weeks, the ultrasound came back smaller than expected, they were able to identify Jaylie was a girl, but were starting to become concerned with her size. We initially thought the tech whom did the measurements may have been mistaken because it was her first day on the job and she clearly was having problems and challenges with the machine, at one point she had to
leave the office to retrieve the manual for the ultrasound machine. We were sure things were fine, and that it must have just been user error or something along those lines. So we happily moved forward without a care in the world. Picking out baby clothes, baby this and that, registering for a baby shower and going over baby names, concluding with the name of Jaylie.
Then 22 weeks comes along and the Dr's confirm the original ultrasound measurements were indeed correct and that Jaylie's growth was falling behind schedule – this is very alarming and concerning news. Kristina's Dr's was quite concerned with the results and so she recommended we see a fetal specialist. So in week 23 we meet a wonderful set of fetal specialist's in Bellevue.
They are the top in their field utilizing the latest tools and technology to assist in diagnosis and treatment. We were quite impressed with their thoroughness, professionalism and precise conclusions – though we were not encouraged with their conclusion. The first fetal Dr we saw did an awesome job with the ultrasound in addition to performing doppler blood flow tests at various points in and around the placenta and little Jaylie. He was happy to see Jaylie moving around healthy, and having a good steady heart rate and proper sized and complete anatomy, with the exception of a smaller abdomen and overall smaller in size. As he continued to examine the placenta and blood flow he found some concerning irregularities with the major arterial arteries connecting to the placenta, umbilical cord and Jaylie's internal blood flow. He assured us we would be taken care of but said we needed to speak to another Dr's because this condition was outside of his realm. He said he would call Kristina's Dr and then get back to us, so we left.
We went home some what concerned after the appointment with the fetal specialist. Kristina called her Dr right way to let her know what the fetal specialist advised. Kristina's Dr was extremely upset and advised she expected the fetal specialist to give us move information and was going to call them straight away to setup another appointment right away – of which she did, which let us back into the fetal specialist Dr's office again just hours later to meet with a second fetal specialist that deals with babies in our circumstances. This second Dr sat us down and asked if we understood what all the measurements and blood flow irregularities meant. We advised we did not. The Dr started to explain what they believe was happening was the placenta was not functioning the way we would expect, not supplying Jaylie with the blood flow she needed to develop. Because Jaylie was not getting the blood flow expected her growth has been drastically affected – Jaylie was in blood starvation mode resulting in Jaylie sending all the blood she was receiving to the brain, heart and lungs thus explaining the small abdomen. The Dr continued on to explain they have seen these type of condition many times before typically resulting in a continued degradation of the placenta's ability to function resulting in the Jaylie suffering brain damage and/or death. The Dr continued on to advise there maybe other causes of Jaylie's current dire condition all of which can be tested for but there is not a cure for any of them. As you can understand, this news was devastating news, just weeks ago everything was perfect and moving along as expected – now Jaylie is not growing, being starved of blood flow and given a very small chance of survival let alone being born without any major disability...
Skipping past a bunch of emotional turmoil distress and pain, we decided to undergo tests needed to rule out any major medical issues causing Jaylie the problems she is experiencing. We then go home and wait for the results of the tests and then come back in 3 days to check the blood flow again to see if things are improving or not. Well, the latter occurred. When we came
back to discuss the test results and take additional measurements of blood flow the results were grim. The tests came back negative for any other medical condition causing Jaylie's grow issues. The doppler measurements concluded the blood flow had decreased a step further. The Dr advised we decide what we want to do sighting 3 options:
Termination of the pregnancy
Intervention with a < 10% of survival
Go home and let nature take it's course most likely resulting in Jaylie passing way
As I'm sure you can understand, at that moment in time, we were not willing to accept any of those options. We knew we have one of the best neonatal care facilities in the state in Seattle, so we asked if we could meet with one of the top neonatal Dr's at Swedish in Seattle ( if you are counting, this is Dr number 5 ), she was more than happy to immediately setup an appointment for us to meet with the neonatologist . Two hours later we were in Seattle meeting with one of the top neonatologists in Seattle.
Dr Mac, neonatologist with Swedish medical center in Seattle, sat down with us and clearly outlined our circumstances, gave us statistics on our situation, shared personal stories both with positive and not so positive outcomes ( all the while being paged no less than 10 times requesting his professional opinion on an urgent matter and/or birth ) explained that if we were to 'intervene' today and have Jayie via c-section because of Jayie's Intrauterine growth restriction (IUGR) he was not certain he could keep her live. He continues to say, even if he could keep her alive, she would suffer sever life long medical challenges. Dr Mac said, the reason why Jayie is in bad shape right now is because without the blood flow she is not able to develop and mature things like a completely mature abdomen structure (thus the smaller than expected abdomen measurement). Dr Mac explained what he typically has seen in these types of situations, where intervention is exercised, is the baby is delivered via c-section, hooked up to all kinds of medical equipment just keep the baby alive, and that usually about 2-3 days after the delivery the baby will start to have major abdominal issues which can cause death or life long medical issues among the other life long medical issues the baby and parents would be tasked to live and deal with.
Though my explanation of Dr Mac's chat with us may sound bleak and depressing, both I, Kristina and Kristina's Dad ( who came with us to meet with Dr Mac ) felt incredibly relieved and equipped with the right information and answers we needed to have the peace needed to take the next steps forward. Kristina's dad said and I quote “He was phenomenal.” of which I agree 100%.
So where does that leave us, well, we've sort of come to our conclusion by process of elimination ( at least from my perception ), the option of termination is definitely ruled out, intervention has been ruled out as well, so that leaves us with putting Jaylie in God's has and allowing His perfect will to be exercised in Jaylie's and our lives.
No one but God alone knows what the hours, days and months ahead of us behold.
We are prayerfully living out each day thankfully for each heart beat and moment Jaylie is still with us.
Kristina and I don't have the word's to describe the love and appreciation we have for all the prayer and support we have received from you our friends and family.
Please continue to keep us in our thoughts and prayers, we need them an appreciate them all.
Thank you So very much!
Nathan, Kristina & Jaylie