Some Good Things

12/8/2008

To Friends and Family (from Dan this time):
Since we last let you all know what was going on, we have been to see our genetic counselor and had an EKG done on Reagan's heart. There was one failed attempt to try and get another ultrasound done to see how she is doing, but the ultrasound machine crashed on the morning that we were supposed to go, so that is rescheduled for Friday the 12th.

We had a great time in Miami visiting Landy, Manya, Landon, and Luke, and I won my division in the triathlon. It was also nice not thinking about everything for a week.

In meeting with Dr. Zunich (our genetic counselor, she's awesome) we learned more of the realities of Trisomy 18. It's bad, really bad, but we also learned that if Mar makes it to the 3rd trimester (1 week from now) the "loss rate" compares to that of a healthy "normal" pregnancy. That was quite encouraging to us since all along after coming to the realization of Reagan's chromosome problem, we wanted to hold her and let her know she is loved. I am sure Reagan knows that, but just to hold her and love her for however long we have would be a blessing.

Unfortunately, Dr. Zunich told us that the likelihood of this happening in another pregnancy is significantly higher. For someone that is Mar's age the statistics say that it is around .4%, but since it happened once, it now jumps to 4.5% in future pregnancies. Dr. Zunich went on to state that we need to start thinking of where we want to deliver and what the doctors there will do. Their actions, or lack thereof, will determine where Reagan comes into the world. In Chicago she gave two suggestions: University of Chicago and Northwestern. Both have children's hospitals but U of C's is attached, and the less she has to be moved the better. Based on this info we initially went with U of C. We were just waiting to see what the doctors would say in reference to their willingness to operate on a Trisomy 18 baby. In the medical field there is hesitation to operate on T-18 babies since T-18 babies are very fragile. Well after Dr. Zunich spoke with the doctors at U of C, we are planning to go with them, which is fantastic. We are going to meet them in the coming weeks to see where Reagan will be born and to meet the people who will care for her in her early hours of life outside the womb. We learned a lot of things at that meeting that day, mainly that we might be able to bring her home if she is strong enough, but if she is not, then the doctors will do all they can to make her short time with us, her family, as comfortable as possible. This is a very different idea than we had up until that day. I'm sure many of you are wondering how something so small can mean so much but in the days following the appointment it was hard to put in words what that meant. We went from planning for a stillborn baby or a baby that would live a few minutes outside the womb (which is still potentially the case) to thinking we might be able to bring our baby home. Up until then we knew nothing different so as a result it was really good news. We left that appointment not knowing how to tell people about it but, to think that we might have Reagan for a few days, or even months is a great blessing. The other thing Dr. Zunich mentioned is that somewhere close to the time when we bring her home we will stop thinking, "is this the day she is going to be with our lord and savior Jesus Christ", to, "this is a blessing because I have another day with our daughter."

I know looking at it, it is very hard for me to describe. In my heart(Dan) I know that God is in control but this isn't fair. Please don't tell me (Dan) "that you can handle this," I know that already, this still isn't fair. I am a Christian and I walk with God daily and I know at times I get angry at the creator of the universe but, deep down I know He is using this for His kingdom, as that is my life, to bring glory to Him, and that is what He chose to do through me, in that He is revealing His grace. Grace has been heaped upon my head, specifically by His Son Jesus Christ.
Well onto the second appointment. We went to a children's hospital on the south side of Chicago for an EKG on Reagan's heart. We had learned from the appointment with Dr. Zunich that 95% of T-18 babies have major heart defects. Just a quick side note, if you have an ultrasound tech not say anything it is either really bad (the one at 20 weeks), or they have never seen anything this good before (the EKG). For us it was the latter this time. They were very amazed that based on the ultrasound of Reagan's heart they could not find a defect. They had never seen a T-18 heart look that good before, and the somewhat funny part was that they wanted us to come back so that they can see it again (I assume because they are curious). There is a small 2 maybe 3 millimeter hole between the two lower chambers but that is not a big deal at all. Healthy babies can have that up until the 3rd or 6th month. When people on the internet and Doctors talk about heart defects it is that T-18 babies are missing valves, chambers and all sorts of stuff, but finally praise God, some good news. The hole can be treated with antibiotics after birth which I
just learned on Friday. So another piece of good news. Two pieces of good news in one week, now we are rolling. Like I said earlier we were going to get another ultrasound done by the "Rock Star" but his computer crashed so we are going this Friday.

At times for me it is tough like earlier in this e-mail. I see things, people, families, but then I look or think of Jackson and his smiling face, his love, his hugs, his kisses, his laugh, I am so thankful God gave us such a precious gift in Jackson.

Well on Friday we go to the "Rock Star" and then we set up appointments with U of C and see what we need to do there. We also are going so that they can meet us.

Some of you may know that due to my job I am up for a transfer, but it looks like that may get deferred for about 9 months which is a huge blessing since moving around Reagan's birth would certainly not be ideal (if even possible).

Please keep praying, everyday is a struggle in one way or another. It gets easy then tough knowing what is coming, but we might have time with our little girl. Thank you to everyone who has been keeping us in your prayers and thoughts. Having our friends both near and far know what is going on is comforting.

Love,
Dan and Mar

Trisomy 18

11/6/2008

Dear friends and family,
This is the email we didn't want to send. We received confirmation from the doctors yesterday that our Reagan Joy does, in fact, have full Trisomy 18. We are heartbroken. We don't specifically know what happens next as far as the doctors are concerned; at this point there aren't any urgent appointments already scheduled. We know they are interested in a fetal echocardiogram in order to look more closely at her heart and whether or not there are heart defects that haven't shown up on the ultrasounds. We will also be sitting down with the geneticist again to learn more about Trisomy 18, what to expect, how we can prepare, and resources and support that are available to us. Those meetings will happen in about 2 weeks.

Our next step, personally, is that we leave tomorrow for Miami. We've had this trip planned for quite some time and we're looking forward to getting away. Dan will be participating in a half-ironman, we will get to spend time relaxing with Dan's brother Landy and his wife Manya, and Jackson will get to play with his cousins Landon and Luke. Since nothing about our situation is putting my health in danger, the doctors have given us the go-ahead and we think it will be good for us. We look forward to the time to rest, talk, enjoy Jackson, and take Reagan on her first airplane ride. We want her to meet the people we love and do the things we enjoy, and this is a great way to start. It will be our first vacation as a family of 4!

We thank God for good doctors, for our Jackson who saves the day every day and makes us smile, for flexible work arrangements that allow us to do what we need to do, and for the fact that we have an answer and know what we need to prepare for. We covet your prayers for peace, for rest, for direction on decisions that need to be made, for continued protection of Jackson, and specifically that Reagan would make it to term so that we can meet her, hold her, and love on her at least for a while. That is our biggest hope right now, that she will know how much she is loved.

Thank you for your support and prayers. Again, we couldn't do this without you and we thank you.
Love,
Mar and Dan

It's A Girl!!

10/28/2008

Dear friends and family,
So many of you are anxious to hear the outcome of our appointment yesterday, so we wanted to send another update. As you might pick up from the subject line, we learned that we have a daughter, and her name is Reagan Joy Glavach. It is such an answer to prayer to us that we were able to find out. We are thrilled to have not only a name, but a face to put with that name. Our doctor yesterday was nice enough to follow up with a partial 3D portrait of our little girl, which is pasted below.

We came away from yesterday's meeting feeling about the same as we felt on Friday. We had a good meeting, but things don't necessarily look good, and we didn't learn anything definitive. Dr. Birnholz confirmed the findings from the initial ultrasound and expanded on them a bit - the omphalacele includes her intestines, bowels, and at least part of her liver; her feet are rotated at the ankles, but the leg bones look good; and the cysts are definitely present on her brain. He is most concerned about her brain - the cysts are quite large and they take up so much of a portion of her brain that it appears as though that part is underdeveloped because of them. He still thinks there is a chromosomal abnormality, but he doesn't lean as strongly toward Trisomy 18 as the geneticist did (this could be both good and bad). We think this is because her hands and heart look good, and both of those carry such a high percentage of malfunction with Trisomy 18 babies. We are encouraged by how good her heart and lungs look, as well as her face, which shows symmetry and no clefts. Her limbs also look good and the level of amniotic fluid is adequate.

We continue to pray that it's not a chromosomal problem (18 or otherwise), and that will be confirmed with the results of the amnio. He said to expect about a 7-8 day wait for those answers. We should learn then if it is chromosomal, and if so, which chromosomes are affected. If it isn't chromosomal, we will meet with the geneticist again to see if there is a syndrome of some sort that we can connect this to, so we might know how to prepare.

At this time we continue to pray for absolute healing, that it wouldn't be chromosomal, and that we could meet this little girl. We also ask for prayer as it is very difficult to wait. It was a rough day today as some of the physical and emotional wear took its toll, so we pray for rest and energy to make it through these days.

We love our Reagan Joy and thank you for the interest you have taken in her life. Thank you so much for your prayers - we are brought to tears over and over again by the outpouring of love and concern that so many have for us. Thank you.
Love,
Mar and Dan

How it all began...

10/25/2008

Dear friends and family,
As many of you may know, we received a shocking blow at the ultrasound on Wednesday when we learned that there are some problems with our 20-week old baby. They saw 3 issues that cause them concern: omphalacele (which is when the intestines are on the outside of baby's body), bilateral club feet, and choroid plexus cysts (which are on the brain). Any one of these problems could be corrected if it was present in isolation, but the fact that they are all happening at the same time is what causes the doctors concern. We were immediately referred to a pediatric geneticist, who we met with on Friday afternoon.

That meeting yesterday went well, but we didn't get good news. There isn't yet a 100% diagnosis, but all the signs are pointing to Trisomy 18. Trisomy 18 is a chromosomal defect which happens completely by accident - it is nothing hereditary, nothing we did, nothing we didn't do. We won't go into the details of Trisomy 18 here, but feel free to google it, where you will get a lot of information.

The geneticist immediately referred us to a specialist who performs high-risk fetal ultrasound. As she says it, he is the "rockstar" of the ultrasound world, located in the Chicago suburb of Oakbrook. She called him while we were in her office and we already have an appointment on Monday at 12:30. At that appointment they will perform a Level 2 ultrasound and amniocentesis. The amnio will allow them to specifically check the chromosomes to confirm or deny Trisomy 18, and the ultrasound will allow them to confirm or deny the initial ultrasound findings, as well as to take a more detailed look at the heart and other organs to confirm any additional abnormalities.

We, of course, are heartbroken and scared, but we are resting in the support of family and friends, and especially in the peace and strength that we know only comes through our Heavenly Father. We praise him for the amazing doctors that we have already seen, for our ability to get into these appointments quickly, and that we have had care for Jackson when we needed it, so we can make it to these meetings together. We ask for prayer: that we would continue to meet with skilled doctors, that our Jackson would be protected and cared for during this time, that our baby won't have to suffer or feel pain, that we would be able to get the rest and sleep that we need, and mostly that it wouldn't be Trisomy 18 and our baby would be healed. If our baby isn't healed, we pray that God might allow us to see how He is using this for His glory in blessing either us or the people around us.

I'm so happy to have gotten some pictures of our sweet baby from Wednesday. I've attached them below so you can see who you're praying for. We are very hopeful that we will find out the sex of the baby on Monday so we can start to call him or her by name!
We love you and thank you supporting us. Feel free to call or email anytime, we love hearing from you.
Love,
Mar and Dan