The Setup
We arrived at the Spectrum Health Downtown at 7:30pm Thursday (1/15/09) evening for the scheduled induction. Things were started with a dose of Cytotech every 4 hours. Things progressed slowly, and after 3 doses Kalani was barely 2cm. The physician decided it was time to get things moving and, rather spontaneously, broke her water. Pitocin followed and an epidural was ordered shortly after. With increasing frequency and strength of contractions, nausea and vomitting commenced. The normal for her. Around 2pm she measured 3cm and we locked down for what we thought would be a LONG day. With stronger contractions and the epidural tapering off, the Anesthesiologist was summoned to adjust the doseage.
The Arrival
With the nurse gone paging the Anesthesiologist, several strong contractions followed, all the while she continued with the vomitting. While having one particularly strong contraction, Kalani had a very forceful "heave." This was enough to do the trick, as she turned her head toward me with a shocked look. Cooper had arrived! With him delivered to mid-abdomen, I ran to the door and shouted for a nurse. Within seconds the room filled with people, and the delivery was completed. Cooper looked great and came out crying. We were basically in shock, but Kalani handled things wonderfully, as usual. She held him for a brief time and he was quickly cleaned up and brought up to the NICU. We learned his measurements later, as they weren't taken initially.
Time of Delivery: 4:09pm (16:09 on 1/16/09)
Weight: 4lbs-11oz.
Length: 17.3"
The Current
Cooper has Fanconi Anemia as explained in our blog after this was diagnosed awhile back. The physical traits of FA are still being confirmed, and the findings are still being analyzed. In trying to keep this brief, I'll outline what we know currently. Cooper was born without the radius bone in each of his arms. His thumbs on both hands are also absent. We anticipate meeting with a pediatric orthopedic surgeon to discuss possible treatment options for this condition. He was also born with an imperforate anus. This is a congenital malformation in which the rectum is basically a dead-end and there is no anus. This was the first priority to address, as his ability to feed is currently questionable, but would not be possible without an "exit" of some sort. In the next day, much will be determined by Cooper's ability to feed normally and his ability to "suck, swallow, and breathe" at the same time. The good news is that the imperforate anus condition has had excellent success with surgical repair. Surgery was performed this morning and a successful colostomy was achieved in order to carry stool out of the body. Cooper is recovering nicely from this. This is the first step toward the correction of his colon and rectum and it's connection to his bottom. This link below describes the process nicely.
http://www.nlm.nih.gov/medlineplus/ency/article/002926.htm
Additionally, Cooper is lacking an ear canal in one ear. A head MRI will determine if an ear drum is present. He seems to have hearing in his other ear, but the canal is quite small. A hearing screening will help verify this, and a ENT will look at this more closely. His eyes are also very small. A pediatric ophthalmologist will examine him to determine if his vision is affected by this. An MRI will also need to be done to look more closely at inside his head, as there was some initial findings of some underdevelopment of a portion of his brain.
OK, some positive news now. First, he is pretty darn cute! His heart, kidneys and initial bloodwork all look normal. He is also able to breathe without assistance. These are also areas that can be affected by FA. We are thankful for this, as we have learned to find joy with each small victory and take things one step at a time.
Please continue to keep Cooper in your prayers, as well as strength for us as our family travels this uncertain road.
Cast your burden upon the Lord and He will sustain you: He will never allow the righteous to be shaken.
Psalm 55:22
The time is finally here for us to have this baby. We will be going in Friday, January 16th to be induced. While I will be glad for the physical aspects of being pregnant to be over we are anxious with all of the uncertainty surrounding the birth. In our last several appointments the baby has fallen off of the growth charts and the doctors have told us to be prepared for any outcome. While this is difficult we are ready to have this part of the journey over and to move on the next part, whatever that might be. This is will be a particularly difficult time ahead for us. Please keep our family in your prayers, that we might have the strength to get through this. We really appreciate all of the support and understanding everyone has shown us.
We just had our lastest ultrasound. We received good news. While the baby is small he is steadily growing and within the limits they would like to see. The fluid in his brain has stabilized and not increased, this is great news, and he will likely not need shunts.
Following the ultrasound we had a visit with the neonatologist who went over the potential problems we may see once the baby is born. The list was pretty long and the day was a roller coaster ride filled with emotional ups and downs.
With only 5 weeks to go we are approaching the end and also the beginning. We continue to ask for your prayers as there are still so many unknowns and unanswered questions.
Thanks for your thoughts and prayers
Well, we received the final diagnosis for the baby. He has Fanconi's Anemia. We were really hoping the tests would come back negative for this, but we were not so lucky. This is a genetic disorder that both parents must carry the gene for. There is a 25% chance of passing it to a child and 1 in 100,000 children are diagnosed with it. We were also informed that this is what Abby had as well. Back in 2000 we had Chromosome tests run on Abby but no diagnosis was made and we were told what happened with her was a fluke, like lightening striking. It took the right doctors seeing the right things and ordering a specific test to make the right diagnosis.
Fanconi's Anemia is when your cells are fragile and succeptable to breakage. This fragility leads to infections and cancer. As you can see this is something no parent wants to hear.
To make matters much worse we were told some children have no birth defects but still have the disorder and will sometime in their youth start to experience problems. We were told we needed to have Leila and Tess tested. I can't tell you how awful this was. Bringing your children in to get blood taken to be tested for a life shortening disorder is something no parent should have to go through. We were told it would take 2 to 3 weeks to get the results back.
I can't tell you how much it helped knowing everyone was praying for us. People we know had their respective churches praying for us. People we didn't know who hadn't believed in God were praying for us. The number of people praying for us was just amazing!
2 weeks later, just two days before Tess's 1st birthday party we got the call. Both girls tests came back normal. Praise the Lord! Tess's birthday was a double celebration.
Thank you so much for praying for us and our children. When something like this happens your reminded that tomorrow is not promised to us, we don't know what the future holds. So hold your family close and thank God for them every day you have them.
Thank you for your continued support. I will keep you updated on the baby front.
We want to thank everyone for your prayers. Please keep them coming, we will need them as we continue on this difficult journey.
We have been in for several ultrasounds and had an amniocentesis done. The amnio has shown a problem with the babies chromosomes. They will be doing further testing on the amniotic fluid to try to get a specific diagnosis.
The ultrasound shows the baby growing well, although the brain is measuring a little small.
We are continuing to have faith in God and his plan for this baby.
Unfortunately, several hours after posting our happy ultrasound news we received a call from our Doctor with sad news. There were some problems seen on the ultrasound. I have gone in for another ultrasound only to have the findings confirmed.
The baby has extra fluid in the brain, essentially hydrocephaly. We will be having more tests and watching closely to see how the baby is growing. Right now we do not know what the outcome will be.
Please keep us in your prayers as we are going through this difficult time. We know God has a plan for us and we are especially thankful to him for our 2 healthy girls.
"My grace is sufficient for you, for my power is made perfect in weakness." 2 Corinthians 12:9
Baby's face
Baby's profile
This is a 3D picture of the babies head and face. The hand is by the chin. They give you a weight estimate based on bone measurements and the baby weighed in at 10 ounces.
It's Boy!
Darrel and I were so excited for Ultrasound Day. There isn't very many big milestones in a pregnancy and we were really looking forward to this one. Besides making sure all body parts are accounted for, finding out the gender is pretty special.
With three girls under our belt we were pretty surprised when the tech told us, it's a boy!
We are just so happy that everything looks good and seeing the baby makes it all the more real. Soon we will have a family of five. Leila and Tess will have a brother to play with.
When we had Abby and all we went through with her we would have never imagined that eventually we would have three more children. (well, 2.5 at this point) We are so thankful for all that we have.
"Give thanks to the Lord, for he is good." Psalm 136:1
Coming January 23rd in High Definition
As everyone knows by now we have a new baby on the way! While we were a bit surprised we have been keeping the verse in Jeremiah 29:11 close to our hearts, "for I know the plans I have for you".
Since we have several girls and had our other daughter Abby, everyone wants to know, is it a boy or a girl?
I thought I would post the heartrates from my doctors apointments and see how the old wives tales stand up. High girl, low boy.
Date Heartrate
July 2 160
July 29 135
August 26 148
September 24
The ultrasound is scheduled for September 8th at 9:30am. I will post pictures and tell everyone the results.
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