Monday, August 31, 2009

Last routine OB appointment

This was just a routine appointment. The doctor said she saw the notes and I told her we were going to have an MRI on Averi's brain on the 2nd. She listened to Averi's heart and said it sounded strong. We have an appointment with Sac MFM on the 22nd to transfer care and do a full work up. No other news to report.

Sunday, August 30, 2009

Church service was awesome

Today's service was so fitting for us. As if the pastor was speaking directly to us.

I cried through most of the service. I knew God meant for us to be there.
Worship was so annointed, message was confirming and convicting and guest speaker was awesome.

Ok so, it was hard for me to be there at first because they started out with a baby dedication. As the pastor was talking he started saying how we were made in God's likeness, and that God had a special place in his heart for children. That regardless of what we look like or how we are born that we were His children.

The head pastor did a sermon on "pushing through" our anxiety about our health, finances, relationships. Pray, put it in God's hands, trust in Him, and push through. We can't wallow in our misery if we are going to see the answer to prayer or receive blessings ahead. Pray and Trust and Push Through. I thought very fitting for our situation even our teenage son ALex said "Mom did it sound like the pastor was talking to us"

On a side note, we have made our older children aware of what is going on throughout this entire time. In words that were fitting for their ages, we explained that Averi had a whole in her diaphragm and she would spend some time in the hospital after she was born. I wanted them to understand why I was sad at times and why I would need a moment from time to time. Ian, our 5 year old, just knows that the baby has an ouchie.

back to the service.....
Then the pastor had a guest speaker. She lost her son to cancer. He was 15. She spoke about how at 2 he was diagnosed with cancer that took is eyes. She never let that bring him down and that in his time here on earth he could skate, play video games just like the other kids, find things the other kids couldn't, and he reached so many by his message. A disablity doesn't have to affect his life. That because of his relationship with God he was able to go in peace. How that taught her so much and brought her closer to God. Even though his time here was short he was a champion in the Lord and taught so many people so much.

Kevin admitted that he cried during the service. I was shocked. He said he asked for forgiveness for not trusting in the Lord, for even comtemplating termination. He said that if there were ever a service we needed to go to it was that. He then said that he thanked God for me, that I had the courage to accept whatever challenges we had to face for Averi, that he was ashamed he did not have the same courage. He now was 100% without a shadow of a doubt positive that we were supposed to have Averi and that God had a plan for all of us.

Friday, August 28, 2009

A profound daily devotion

I decided today that I needed to get back into my daily devotions and we needed to go back to church. We have taken a break from church for quite some time and it was now time to go back. I wanted to share what the daily devotion was for today's date since it was so fitting to my situation. This is true for most of the devotions, they just seem to fit whatever situation I am in. Praise God!!

God Knows What's Best

Trust the LORD with all your heart and don't depend on your own understanding.
Proverbs 3:5

The problem with this world is that it doesn't fit. Oh, it will do for now, but it isn't tailor-made. We were made to live with God, but on earth we live by faith. We were made to live forever, but on this earth we live but for a moment....
We must trust God. We must trust not only that he does wat is best but that he knows what is ahead. Ponder the words of Isaiah 57:1-2: "The good men perish; the godly die before their time and no one seems to realize that God is taking them away from the evil days ahead. Fot the godly who die shall rest in peace" (TLB)
My, what a thought. God is taking them away from the evil days ahead. Could death be God's grace? Could the funeral wreath be God's safety ring? As horrible as the grave may be, could it be God's protection from the future?
Trust in God, Jesus urges, and trust in me.
A Gentle Thunder - Max Lucado

My heart just ached after our UCSF appointment. The ONE fear I had was that I didn't want Averi to suffer. I think this speaks volumes for what is happening to us. If God's plan is to have Averi go home with Him even though it would be so hard to accept, this tells me that He is saving her from suffering that she will rest in peace with him. That if God's plan is for her to come home with us that she will NOT suffer, and He knows what is best, that He has chosen us to take care of her. This really gave me some peace.

Thursday, August 27, 2009

MRI appointment

We received an email today from UCSF. We have an MRI scheduled for 9/2/09. It will be about a hour and a half appointment.

Once again thanks for all the prayers and support.

Another ultrsound at Sac MFM

For this appointment I honestly did not know what to expect. We had just had a scan so I wasn't sure what they were looking for. When the technician started the scan I realized just how much better their equipment was. This scanner was like brand new, and the picture was SO MUCH cleared then UCSF's scanner. This was reassuring to me. She took a lot of pictures for us and I hope to get those scanned so I can add them to this post. The doctor came in and finished the scan. He said they did NOT see the enlarged ventricles that UCSF indicated. Her growth, and heart looked good. He said they would see us in about 4 weeks for another check up and to complete the transfer of care. He said we would have the baby at UCDavis. He did say that the hernia was pretty large. In my heart I knew that this was our baby and that God had a plan and we were having this baby so really this appointment was just another appointment.

Now we wait for the MRI appointment.

Wednesday, August 26, 2009

Call to UCSF with our decision

I called UCSF and told them that we were keeping the baby. I also advised them that if it was an option I wanted the MRI done. On a side note, I have read that they can get a better idea of lung tissue and how much liver is up, in Averi's case confirm or rule out the brain damage as well. She said yes they would do a pre-auth with my insurance and call me back or email me with appointment information. I also advised them that we would be transfering care to Sac MFM.

I then called Sac MFM to let them know we would be transfering care to them and also to confirm if they still wanted me to come in the next day. She said that they sis want to see me still and do another scan. So we will go to Sac MFM tomorrow, and wait to see when we will have the MRI.

All of your love and support is such a blessing. I cannot say it enough, we are so thankful.

Tuesday, August 25, 2009

The UCSF appointment..... worst day ever.

Forewarning, this is going to be a long one so get comfy.

We got up at 5am. I am not a morning person but could not sleep so I was up when the alarm went off. We were going to leave at 6am so we would make sure we got there at 9:15am for the appointment time. My mom and sister came over to take care of the kids and make sure they got off to school ok. I left 2 pages of instructions for them, can you say overkill? I was so nervous it was all I could do to keep myself busy.

I took us 3 hours but we got to San Francisco and at UCSF at 9am. We actually could have been late, we had to wait a long time for the untrasound. I actually feel asleep leaning on Kevin while we were waiting. He got a little drool on his shirt. Oops. The scan took so long. I knew they thought they saw something on Averi's brain again because the technician pointed it out to the visiting doctor we agreed could watch. That made me nervous. Other than that they didn't see anything new or different from what Sac MFM saw (we asked the doctor). Once they were finally done they advised us to go up to the office to speak with Dr. Wu who was expecting us.

We went up to see the doctor and he explained what they found. First, he explained that the stomach was next to Averi's heart and her heart was pushed all the way to the right. He was very nice and explained all of this in a way that we could understand it. He asked us if we had considered termination. There is that question again. Really? I explained that this was not an option for us. He then explained that they did a calculation called an LHR (Lung to Head ratio) and that Averi's was 1.05 at the lowest. Which put her in the mid-range as far as severity. He then went on to explain that do to this we did not qualify for the surgery, since they have found in their research that this surgery was not beneficial for mid-range cases. This all made sense to us and we understood that Averi was not in the best situation but also not in the worst. He did explain that they had a "suspicion" that Averi had brain damage. The ventricles in her brain looked enlarged and that they thought they saw these dots around the enlarged ventricles. He said an MRI could confirm or rule this out. They measured Averi at 23 weeks and 5 days, right on target.

This was not the good news we were hoping for but not the worst news ever either. So we went on the the ECHO. The ECHO also took a long time. Averi was so active it was hard to get all the stuff they wanted to look at. The technician asked me to walk around and come back. We went to the cafeteria and we saw Dr. Wu who asked us to go back to the office when we were done with the ECHO. As we resumed the ECHO Dr. Wu and his colleagues came into the room. My heart sunk, I immediately felt that this was not good, that they were so anxious to talk to us. They told us to make sure we go back to the office and talk to them. The technicians doing the ECHO got all the info they could and said that Averi's heart was a geneticly sound heart. WOHOO God!! He said it would have to be watched because compression from the other organs could change that. I was happy to hear this but still had that sinking feeling anticipating what the doctors wanted to talk about.

This is the hard part (this is an honest and humbling recollection of our feelings please keep in mind how difficult this was for us).....
Back at the office, Dr. Lee and Dr. Wu took us to the conference room. Dr. Lee said that he was concerned about the information regarding our baby. He was specific in regards to Averi's brain and the possible brain damage and the SUA. He said we would not be able to get an MRI with in the next couple of days to confirm it or not, but in these situations when something like this is seen it is way worse then what is seen on the ultrasound once the baby is born. He also said that the SUA that Averi has actually puts her in the very severe range because they had only 15 babies born their with CDH and SUA and only 1 survived and that baby was very ill and in the hospital for months. He all but told us it would be best to just terminate. That we should sleep on it and let them know the next day. That it would not be lying to tell people we lost or miscarried the baby. They kept talking about how we would go about doing termination but I wasn't listening. I couldn't listen, I just cried. He made it sound like Averi was not worth the bother she would cause, that Averi would be a huge inconvenience. I have been feeling her kick me, move around, and knew when she had the hiccups for weeks now. She moved around so much when the techs push on my belly for the scans. How could I just terminate? I can't lie to myself or God on judgement day. Was he being for real? I asked to use this bathroom so I could loose control for a minute. They said that we could use the room until we were ready to leave. For the first time in 15 years my husband cried in front of me. I wanted to leave so bad, couldn't wait, but knew I needed to give Kevin a moment.

I could barely talk as we drove home, but pulled it together long enough to call and check on the kids. Every fiber of my being knew we were meant to have this baby, that I could not justify termination. For the first time in my life I questioned everything about myself. Kevin was so fearful that Averi would suffer that he actually contemplated the option of termination. This shocked me. My heart just ached. How would we work through this? I didn't want Kevin to blame me if this went horribly wrong but I could not fathom the idea that I made that choice. I was in turmoil. Kevin assured me that he would not blame me. He said his fear was on the flipside that he thought that he would wonder everytime we saw a miracle if that could have been Averi as he contemplated termination. I just kept asking God to somehow show Kevin what I was feeling and what I saw for Averi.

We explained what happened to my mom and sister when we got home. My mom being a God fearing woman said that she believed God had a plan and what Dr. Lee said just didn't seem right. The rest of the day I told Kevin that I couldn't do that I wouldn't do it. He said that we would call them and tell them we would have the baby.
I told him that all along I felt we were going to deliver at UCDavis and transfer care to Sac MFM and for me it was now confirmed. We were emotionally drained and went to bed.

Wednesday, August 19, 2009

We have an appointment with UCSF

I got a call today from UCSF. We have have appointment set for 8/25/09. Nothing new to report expect for the appointment date.

Short and sweet, this is rare for me. I usually talk/type way too much.

To family and friends, thank you again for your continued prayers and support. This would be much more difficult to deal with if it weren't for all of you.

Friday, August 14, 2009

We received a call from UCSF

I recevied a call from UCSF. The coordinating nurse told me that she received all my medical records and scans from my OB and SAC MFM, and they were ready for me as soon as they received the pre-auth from my insurance. She then explained that they would re-do all of the tests except for the amnio. She said they would do the ultrasound, an ECHO, an then we would meet with a doctor. She advised me that we should plan to be there all day. I asked if we would find out that day if we "qualified" for the surgery. She advised me not to expect to come there for the surgery. I was disappointed immediately. She said you are coming here for a second opinion not for surgery. The surgery only happens for about 35% of patients who go there for CDH. She told me to go to their website and read all of the information on CDH, that it would prepare me for the appointment.

I finally sat down to read the information on their website and was devastated by the real facts given on the website. SO many of the babies born with this just don't make it. This was so hard to swallow, and definately makes it hard to "stay positive" after reading the medical statistics. I kept thinking I should've waited until the appointment was scheduled before reading this stuff. I was devastated and angry. It was frustrating to say the least. I felt helpless and hopeless. I just wanted to make it all better for Averi. All I could do was pray, and leave it in God's hands. At times this is definately easier said then done, but I am learning.

Thursday, August 13, 2009

Final amnio results and we picked a name

We got the final results today. All results are NORMAL. I was so relieved to hear this I started crying. As the tears rolled down my face I heard "Mrs. Gaynor, do you already know what you are having?". This was a different genetics counselor than the first one. I said, "Yes, but tell me again anyway" She said, "It's a girl". I asked just to hear it again "And everything came back normal". She assured me all results were normal. I thanked her several times. When I hung up all I could say was "Thank you Jesus, Thank you Jesus". I yelled for Kevin and told him and we cried together. I called everyone that wanted to know and told them. Kevin told his family.

Later that evening I was looking at names I really liked Aubrey, but we have friends that have named their daughter that. As I was looking through the rest of the A's I noticed Averi. The book I have says it is a form of Aubrey and means "noble strength". How fitting I thought. Then Hope goes without saying. I said to Kevin "What about Averi Hope?". He said he loved it. Averi Hope is due on or around December 17th. Now it was waiting for a call from UCSF.

Again, and I cannot express this enough, I am so thankful for all of the love, support, and prayers. It has been such a blessing to know we have so many routing for Averi. I thank God everyday for the people we have in our lives.

Wednesday, August 12, 2009

Our second appointment with the specialists August 12th

We headed out to Sacramento Maternal Fetal Medicine today. My head was swirling with the unknown. We were still waiting on the final amnio results and they wanted to check the baby's heart again. We went back and the tachnician again was really nice and thorough. The doctor came in and did the ECHO. She said the stomach was still up and part of the liver it was just hard to know how much. At this point we now know why "liver up" is so significant. The liver is a very dense organ and it makes lung growth against it very difficult. The baby's heart is pushed all the way to the right but looks sound in form and function. The baby's growth looks good and is right on target. She said as long as the amnio came back normal then they would go ahead and refer us to UCSF and if they did the fetal surgery we would transfer care and deliver there. She said they did have the ability to care for me and the baby, they had ECMO, the technology, and the experience the baby would need if UCSF did not do the surgery.

We then went to see the genetics counselor. She again asked if we had thought about the option of termination. I said it was NOT an option. She said that things moved alot quicker if it was a consideration because there was a cut off of 24 weeks, that's why she asked again. She then called UCSF and asked for the codes we would need to present to the insurance for approval. She said they did not have the final results on the amnio yet, it would probably be another day or two. More waiting, uggg. We left feeling positive that everything else, aside from the CDH and SUA, looked good.

God can do all things Matthew 19:26

Monday, August 10, 2009

August 10th first day of school

Alex started his sophomore year much more confident than last year.

Kylie went throught several outfits the night before school until finally picking the "perfect one".

Ian looked so big when he had his backpack on and I was teary eyed. Then we got to his classroom and he was the smallest one in the class. It made me feel a little better. Is that wrong?

Two days until our appointment at Sacramento Maternal Fetal Medicine, and any day now for the amnio results. Your prayers again are so appreciated.

Saturday, August 8, 2009

Party for Ian August 8th


Happy Birthday baby boy. Ian is 5!!!!! We had a wonderful day with family and friends, our house was busting at the seams. We had Ian's waterslide up and played candy ring toss! Ian is very blessed and received plenty of gifts. Thank you to everyone who attended in spirit and in person. In true Gaynor form it was an all day party, and at the end of the day I was exhausted to say the least.

Honestly, I was very worried about having to talk about the baby's condition. Everyone was concerned but very respectful. Most had never heard of CDH, I had never heard of CDH prior to the baby's diagnosis. After explaining, everyone for the most part understood the seriousness of this condition, and it didn't come up at the party for the most part. In a few short days we will have another appointment and hopefully the final amnio results. I just kept praying that things would turn out. I really was at a loss for exactly what to pray for since we were still learning about our baby's situation, but I tried.

So many of you have had encouraging words and prayers for us and our baby.... thanks from the bottom of our hearts. Your continued prayers are so very appreciated.

August 4th-8th Ian, Kylie and Alex


Ian said he looked like a bug when the technician showed him what he looked like in the mirror.

It has been quite a week.... busy with appointments and such.

Ian had an EEG on the 4th to check his seizure activity (picture shown above). He has epilepsy and takes medicine to control the seizures. (We got the results and the doctor is pleased, no seizure activity.) He will start Kindergarten on the 10th. My baby is going to school.

Kylie had a check up and vaccination on the 5th. She is on good health and ready for school. She will start the 7th grade on the 10th. Junior High for my baby girl!

Alex had orientation on the 6th. He will start the 10th grade on the 10th. Seems like just yesterday he was singing the theme song to Blue's Clue's.

We have started the business of getting ready for school on Monday and Ian's party this Saturday. With so much to do it has kept my mind occupied, but there are still moments where I breakdown. We also told our closest friends and neighbors.

The out pour of encouragment and prayers are so appreciated and has made us feel as if we are not alone. God is so great.

Tuesday, August 4, 2009

The initial results August 4th

We received a call from the genetics counselor today. NO Downs (trisomy 21), or trisomy 13 and 18. These are most commonly associated with CDH and our baby DOESN"T have them. Hallelujah!!!!!! We also found out that we are 100% having a GIRL. The final and remaining results would come in about 8 days. I was elated but quickly put me self in check remembering we still had lots of questions not answered. We also got a call that they wanted to move our next appointment up. We were to go in on the 12th for another scan and an ECHO on the baby's heart. There was a good chance we would have the final amnio results as well.

Until the next post....

Sunday, August 2, 2009

August 2nd Happy Birthday Ian.... waiting for results


Our youngest Ian turned 5 today. We took him to Go Bananas a jump house place for a family celebration. He had a blast with his brother, sister, and 2 of his cousins.

His party was planned for August 8th. I intially wanted to cancel this party and crawl in that whole I talked about earlier. What would I tell people when they asked if it was a boy or a girl, how would I explain what was going on. Kevin had finally told his parents, brother, and sister. We just didn't know how to tell all of our friends. Then I came to my senses. Ian deserved his party this situation wasn't his fault.

On a personal note regarding my feelings ( I am including this so that if there is another mom dealing with this same situation that may have the same feelings they do not feel alone like I did.)...... I hate to admit this looking back it seems so harsh, but I intially thought to pull away from the baby, somehow distance myself emotionally. Then once again I came to my senses. I wanted this baby. We wanted this baby. We tried for this baby for over 2 years. The baby was a blessing from God. Somehow He had a plan. Kevin admitted he felt the same way at first. I could feel the baby move all day long, we had plans for this baby. There was no way I could disconnect. We were getting intial results and a couple of days and hopefully have some answers.