Author: Lauren

Just the beginning?

Posted on by Lauren

I had an appointment on Monday with my midwife. The fun test to see if i have gestational diabetes, which we passed with flying colors. I did get a phone call from my midwife on Tuesday but it just turns out I am low on iron, so I need to stay on top of that.

Then Monday night I had the chance to drive down to Grand Rapids to go to the Spina Bifida coffee group with about half a dozen moms that have kids with SB. I enjoyed talking with them and hearing how encouraging everyone was. It is nice to know that other moms have been there to give some advice to other moms who are currently going through what they have already experienced. I look forward to getting to know them more. It is just one of the small blessings that come out of this craziness.

Friday we had an u/s with the high risk OB. They checked all the baby measurements and let us know the fluid in his brain is ‘moderate’ which is alright for a Spina Bifida baby. We got a good look at his spine since he is getting bigger, it is crazy to see spine, then a blur where the lesion is, then more spine, just like there was a smudge on the u/s.
After that he talked to us again about doing the amnio, which I have been putting off because I see no point in doing it. The amnio will check the chromosomes to see if there is anything else going on that might not be “viable for life” which would change the way we would treat him. We feel like there would be other physical signs if this was the case. Things like a cleft lip or hole in the heart, which we don’t see.
So I went to the appointment trying to be strong in what I was going to say and refusing the test. But wow was that not what the doctor wanted to hear. He basically told me “if I don’t do this then I can’t deliver by c-section in Grand Rapids and I might as well go to Ann Arbor. Also what do I just want to deliver here in Traverse City naturally and cause even more problems. Also that the surgeon and neonatologist would not even want to meet with you until they have the results of the amnio in their hands.”
I just felt attacked and lied to. I let him know that I just talked to some moms who just delivered at Grand Rapids who didn’t have the test so I know that Grand Rapids would allow me to deliver there with out having those results. But he held strong to that being untrue and when we see him in two weeks I have to have it done or find another hospital.

So I left, I didn’t even have enough strength or composure to ask the other questions I had, I didn’t want to talk to him anymore. I felt like I was trying to stand up for this child and was completely shot down and lied to by the doctor. Now, it is mostly my stubbornness that doesn’t want to do the amnio. I think it really got to me because this is just the start of dealing with so many doctors and so many opinions and it really is overwhelming. I felt like I did my research and made a right decision for us but was yelled at and belittled by the doctor for refusing the test. With Spina Bifida there really is no absolute right choice, and I think today I just got hit with it.

At least Atreyu knew I just wanted to go home and cuddle, so thats what we got to do, then take a nap. He is such a good cuddler. Also Dave came home with some hydrangeas (one of my favorite flowers) that a client had given him to give to me today. And we get our new refrigerator today, goodbye old 1970’s moldy fridge.
I hope in two weeks at my next appointment I wont be so emotional, it is so tiring.

Family Photos

Posted on by Lauren

Well we got around to having a friend take some pictures. I think they turned out great, so here you go.

Also here are some more pictures of Atreyu.

Some how he started undressing himself before nap, it was funny to find him this way.
Shoving his face with some toast. I’m surprised he doesn’t choke.
So now that summer is over he loves to wear his sunglasses!
Here are the guys riding on the Tractor. I think Atreyu could care less, but Dave was pretty excited. 

No real new update with new baby. We have a couple doctor appointments next week. One with my midwife on Monday and then on Friday with our high risk OB, so another u/s and getting to see him and measure everything. 

Now I am officially in the third trimester. I definitely feel pregnant and can’t stop eating! I can’t believe how fast this is going! It should be about another 10 weeks till we get to meet him. Anyway, more updates next week i am sure.

Here it is…

Posted on by Lauren
So as many of you have heard our next son has been diagnosed with Spina Bifida Myelomenigocele. On September 7th we had a 20 week ultrasound. We left excited that we were having another boy, but later that night our OB office called and let us know they found something abnormal on the ultrasound and wanted us to come in on the 8th for a level 2 u/s to confirm. She told us they saw a Neural Tube Defect. The Ob tried the best she could to explain what it is but all she knew was the diagnosis and not really the condition. It was still a scary situation for us because it was something we had never heard of, and what we quickly googled was completely undeveloped babies that would not survive.  It was a emotional night but we tried not to freak out until we were able to talk to the genetics counselor and high risk OB specialist.
The next day we went in and they were able to give us much better information on Neural Tube Defects and Spina Bifida. We confirmed that it was Spina Bifida Myelomenigocele, which is the most common birth defect that happens to every 1/1000 fetus’s.  They explained that while the baby was forming at 28 days gestation the spine did not form properly causing nerve damage and the lower spine to remain open around the lumbar/sacral level. Because of this nerve damage, he will have difficulty walking if he can walk at all. Most children with SB also have difficulty with bladder and bowel function. There are a few other things that may happen, but we wont know until he is born and somethings not until he is older. His disability will most likely be physical and not mental. We will be delivering in Grand Rapids, MI, probably by C-section and his surgery will be either later that day or the next morning. During that time they will close the opening on his back. They expect the NICU stay will be about 2 weeks for healing. They will also monitor the fluid in his brain to determine if he needs a shunt placed in the back of his head. Sometimes because of the tugging on the spine the brain doesn’t drain its fluid. This would mean another surgery.
Our baby boy at 24 weeks during our 3rd u/s
Once we were told all this, we were saddened that our son would have to go through all of this so soon in life thinking about the surgery and many doctor appointments, but we were so overjoyed and blessed that he would be alright and able to have a life with us. Even though many of you are just hearing about this, know that we have had time to digest all the information and we are alright, we can’t wait to meet this little guy.
In John 9 Jesus healed a blind man and everyone was questioning why he was blind and Jesus replied, “…this happened so that the work of God might be displayed in his life” (John 9:3) This is our prayer for our son, that the work of God would be displayed. We look forward to what God will do.
We decided to start a family blog to keep everyone up to date on the progress of this little guy. We know we will be going through a lot the first few weeks of his life and would like to keep everyone updated for prayer and support. For those we have talked to about this already we are thankful for your prayers and encouragement for our son and family. While we have had a while to take this all in, if anyone has questions please feel free to contact us and ask. 
I have been blessed with meeting a couple mom’s online from Grand Rapids and they are willing to share their child’s life for a better understanding of SB. If you have time please visit their blogs of their family and children, Carson and Greyson. I have been so encouraged by their children and just get more excited to meet this little guy.
 Here are the links, and both their blogs start once they found out the diagnosis of SB during pregnancy. Please read and be encouraged.
Greyson – http://ourlittlegibblet.blogspot.com/
Carson – http://babyboybush.blogspot.com/