Overdue update

27 Weeks 6 Days


I am sorry that I have not posted in so long. The intention of my blog was to share with people I knew and it got out to people I did not and I needed to work through that. It is not bad, I believe it is in fact good for more people to be able to pray for her and I just needed some time to adjust to that.


That being said, one of the major things I have had to work through are a few comments that people have made that they are not willing to pray for our daughter to not have downs syndrome. While I can see where they are coming from as someone with downs syndrome has greatly impacted their lives in a positive way, I do not feel that it is something that is taboo to pray about any more than healing her heart is. I was speaking to one of the most Godly women I know at church today about this very topic and felt prompted to also write her an email with additional thoughts on why praying for her to be born without downs syndrome is good. Here is what I wrote:

After thinking about our talk today, I wanted to share a few more reasons why I believe that it is good to pray for her downs syndrome to be healed. I don't think that is what God intended for his children. I think it is a result of sin in the world. Although, I do believe that God can use the results of sin in wonderful and powerful ways, I think that it is good and right for her to be prayed for in this way. 

1. I don't want to have to tell my little girl that she will probably never be a Mommy as girls with downs syndrome have a 50% chance of being able to have children. 50% of these children will also have downs syndrome and woman with downs syndrome often have difficult pregnancies that will end in loss. In the event that she does get married to a man who also has downs syndrome, they are almost always infertile (there are 3 recorded cases of babies fathered by men with downs syndrome).

Genesis 9:7
As for you, be fruitful and increase in number; multiply on the earth and increase upon it.”

Being a Mom has always been my greatest desire for as long as I can remember. I want to be able to see my daughter enjoy this dream if the spirit leads her and have a realistic chance to live it. 

2. Most girls dream of finding their prince charming, falling in love and getting married. Although some people with downs syndrome do get married, most do not, they face a high divorce rate, not being able to to fully independent, and having a limited pool of suitable potential partners. All parents worry if the spouse is good enough for their little girl and that he will treat her right. I feel that for someone with mental disabilities that this concern is even greater.

3. Studies have shown that 33% of women with developmental delays are sexually abused. http://www.ds-health.com/issues.htm. Ryan and I will not always be able to be there to protect her from people willing to take advantage of her. 

4. I will have to watch her observe other children easily achieve milestones while she struggles with them. She may have trouble communicating real and deep thoughts that she has.

5. All girls struggle with the fear of not being adequate. She will be instantly written off by many people simply because of physical characteristics that she will be born with. 

6. As is the case with my daughter, 45% of children with downs syndrome have heart conditions. Around 4 months of age, I will need to deprive her of food for 24 hours and give her over to a stranger who will cut her open and leave a large scar on her chest as a reminder of something that was once broken. After she returns from surgery, I will need to watch her fight off the anesthesia as she is hooked up to monitors and iv's. I will need to watch her struggle with pain and the effects of pain killers for the days and weeks following as her little body heals from the surgery. I will need to pray that it was successful and that she will not need another one. I will need to pray that an infection does not occur. 

7. Some children with downs syndrome also have bowel obstructions. They do not see this with our daughter yet and we pray that it will not be an issue. If this is the case, she will need to have surgery a few days after she is born to remove that part of her bowel. 

I know that while children with downs syndrome face these and other issues, that they are blessed with things that other children are not, but in the same token, as a Mom, you want to do everything in your power to protect them from things you know many hurt them. That is why I am willing to pray to God and ask everyone I know to pray that he will spare my daughter from this pain and I pray that you will be lead to pray as well. 

I think my letter to this wonderful woman at church sums up my feelings about the topic to others who feel that they cannot or should not pray for her to be healed in all ways. 

Moving on to get everyone caught up from what happened since my last post. 

12/12 - High Risk Dr. Apt

As you may have guessed, our little one has given us an additional surprise that HE is actually a SHE!! I cried when I found out that I am finally getting my little girl. It took us quite awhile to stop saying he and get over that weird feeling of saying "she". I am holding off on buying anything for her (all of my newborn things are gender neutral anyways) and we asked or friends and family to also not give us any gifts right now. I am afraid of losing her and then having a pile of girl things that I need to pack away in addition to dealing with the grief of losing her. 

In addition to finding out she is a girl, they also found that one of her brain ventricles is a slightly large. This is another risk factor for downs syndrome and also an indication for mental disabilities. I didn't think to ask if this would make her more severely disabled than other children with downs syndrome though. 

We are still waiting for a call with a date for an apt in late January or early February apt date to see the high risk doctor again. They want to see if she is still on the growth chart (she will probably fall off of the chart if she has downs), if the ventricles are getting bigger and if her bowel is still clear. We will also meet with the NICU doctors as they expect her to spend some time there after birth because of her heart and because children with downs syndrome often have feeding issues. The Dr. also gave me the go-ahead to deliver with my regular OB's office and the midwife. 

12/20 - Heart specialists - I was very nervous during this ultrasound because the tech looked like she was really looking hard at something. It turns out that she just couldn't find the holes in the babies heart because they are so small. It also turns out that she is the only ultrasound tech to date that has not said something they didn't know about. The high risk dr's. ultrasound tech told us that the smaller the hole the better, but we learned from the heart dr. that the size of the hole doesn't matter. Some babies have large holes and do fine because the pressure is low and some babies with small holes do poorly because there is high pressure. The good news however is that they did not find any new problems. We will see them again on Jan 31.

A co-worker also put me in touch with her cousin who had a scary pregnancy when I was pregnant with my son. She kept a fantastic caring bridge page. Her daughter was born without the problems that the doctors suggested she terminate her pregnancy for and she is 2 years old and doing well today. Her posts are filled with scripture and a comfort for me. 

Now, for a statement that would annoy me if I read that someone else wrote it, but I have the best husband in the world. Not only is he the best husband, but he is the best father I know. He is SO good to his son and to his daughter I am seriously jealous for all of the other kids out there who don't have him as a father. 

He asked our pastor at church if the congregation would pray over us at church for our daughter to be healed.  My co-workers cousin also had their church do this and the scripture she used was" James 5:14

Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord." Our church did just that this morning in front of our congregation. When they asked my husband why he asked for this prayer her replied that he didn't want to hold anything back from his daughter. (How awesome is that?)

Tomorrow night we are meeting with two families who have 8 month old babies with Down Syndrome. They just happened to be born on the same day. Since I have not had much in person time with anyone with downs syndrome I am excited to see what everyone raves about with these kids.

I think that should get everyone caught up. Thank you to everyone (the people we know as well as those we do not) that is praying for and supporting us through this! You have all be wonderful.