Kevin K Gaynor Family Blog

Belly Picture!

2010-07-12T00:46:00.000-07:00

18 weeks 4th pregnancy baby girl Ellie!

It's a GIRL!!!!!!!

2010-07-12T00:13:00.000-07:00

We are sooooooo elated and can't wait to welcome our newest addition to the world! Her name is Elliana (Ellianah/Eliana/Eliannah) Eileen (Ailene/Ileene/Ilene) Gaynor. We will call her Ellie for short. Eliana means "The Lord has responded" and "God has answered me", and Eileen means "light" and also is the name of Kevin's paternal grandma. it just all seemed perfect for our new addition.

We are relying heavily on the scan for abnormalities scheduled for the 28th. The 2nd trimester AFP came back normal, but so did Averi's. I do believe I will not be completely relaxed until we get the results from that scan. Our 3D u/s went well but I felt the pictures were really blurry and hard to make out or I would post them.

I must say that I am still so nervous because there are still so many things that can go wrong. So as we wait for the anatomy scan on the 28th, we pray. I pray for peace and strength. I pray for the health of all of my babies. I pray for the protection of Ellie.

I am not very savvy with my new camera and can't figure out Picasa2 to post these pictures. I have a better one that I need to figure out how to rotate and then will post that.

17-18 weeks pregnant with Ellie girl my 4th pregnancy.

So far So good

2010-07-03T03:05:00.000-07:00

Ok, I haven't updated this blog in awhile so I thought I should. I am 17 weeks pregnant and do far all looks o.k. I do say this with a little hesitance because we haven't had our anatomy scan yet. We will have one on the 28th of this month, but have no patience to wait for that, so we scheduled one of those 3D scans you pay for, it will be on the 5th. I want to know if we are having a boy or girl. Mostly because I really felt like I bonded with Averi when we found out she was a girl and named her. I thought of every moment she moved as time we spent together and considered carrying her in my womb as holding her. I knew we may not bring her home so I relished in every part of my pregnancy with her. I didn't get to hold her until right before she passed, so I really appreciated the time I stopped and really paid attention to every movement she made in my belly. I want to do the same for this baby. I want to enjoy the things I used to take for granted. I am so very nervous, but I don't let that consume me(or at least I try really hard not to).

I miss Averi everyday and don't understand why God took her. However, I do know in my heart that God is good and He loves me. I choose not to lean on my understanding but trust in the Lord with all my heart. Don't get me wrong I have my rough days and lately my sadness seems to have deepened. In these times I go to God, He gives me a peace I can't get anywhere else. I have cried many tears, but I praise God through the tears because His grace is sufficient.

"And He said unto me, My grace is sufficient for thee: for My strength is made perfect in weakness." 2 Corinthians 12:9

"I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid." John 14:27 (NLT)

The kids....

2010-04-19T19:05:00.001-07:00

Alexander Joseph Michael

Kylie Rae

Ian Spencer

Averi Hope

Alot going on since January....

2010-04-19T18:30:00.001-07:00

Me and Kevin

Alot has happened since January.... I miss Averi everyday. My house got to looking like a tornado came through it... I was not my self.

Averi has changed me forever now. I am determined to be a better mom, wife, sister, daughter, friend, and person. Averi taught me just how precious life is, and how much we take for granted.

I thought for sure we were not going to have anymore kids. It took us 4 years to get pregnant with Ian and 3 years with Averi. I will be 35 this year and thought if it takes us as long as last time maybe we wouldn't have anymore. Well...... we are pregnant. I am so scared and worried about this pregnancy. over the last month and half I have taken 4 pregnancy tests just to make sure I am still pregnant. I honestly don't think I will stop worrying until I have this baby in my arms. Even then i will still worry.

This has not taken away from what I feel for Averi. I cry more now than ever it seems. I just think to myself. It is just not fair, it is just not fair.

This isn't the way it was supposed to be.... and in what seemed like my darkest hour I saw this quote online and learned from these stories below.

If God is strong enough to prevent these things, He either enjoys our pain or He knows that it is necessary for our ultimate good.
So we believe the latter and carry on. God is good but entirely too vast to understand.

C.S. Lewis

In addition, I started trying to find ways to keep busy. While volunteering for the church doing database entry, I learned something HUGE and it changed my thinking. I was entering prayer requests (our pastors pray over each prayer request separately and then on a daily basis), I came across a very sad story. A woman just had her first baby and he wasn't born with a brain. She donated his organs. She did not get a whole day with her baby. She never got to interact with her baby.

Another story that changed my way of thinking came from a friend I went to church youth group with. She told me she was praying for me and knew what we were going through. She said her sister's baby was stillborn at 8 months gestation. She didn't even get an hour with her baby.

You see what I learned is that everyone has hard times. I was so very blessed to have had Averi for 28 wonderful days. I got to see her beautiful blue eyes. We got to read to her and she tracked us with her eyes while we did. We sang to her, we talked to her, we prayed for her, she grabbed our fingers and responded to us. I miss her everyday but I know, even through all this pain and horrible tradgedy, I am blessed.

Thank you Jesus for my beautiful daughter Averi, for my husband Kevin, for my children here on earth Alex, Kylie, and Ian. Life is so precious, and because of Averi I am a better person.

Averi's pictures from babyangelpics.com no tubes etc.

2010-01-13T01:07:00.000-08:00

I wanted to post some of the poems, and prayers that people have shared with me or I have come across that have been comforting. I miss Averi everyday and think about her all the time, when I start to wonder about the what if's these really help. These are just a few of the wonderful encouraging words that have been sent to me. I want to thank everyone for the kind words and prayers. It is truly a huge blessing each time I receive them.

Living one day at a time, enjoying one moment at a time, and accepting hardships as the pathway to peace.

Dear Lord, We never got the chance to hold Averi in our arms and tell her all about you. Now, please, would you take her into your arms and tell her all about us?

Cuddled in Heaven
We had so little time to share,
Too soon, I had to leave.
I know how much you love me,
I know how much you grieve.
I know how sharp your pain is,
I feel the aching in your hearts.
My life so quickly ended
Before it barely had a start.
I remember how you held me,
And kissed my face and hands,
You cuddled me so gently;
But, God had other plans.
I was your perfect angel,
From God you knew I came,
Suddenly he called me home again,
And now God holds my hand.
I know you'll always miss me,
I understand your pain is hard to bear.
Just remember that I'm in heaven
And we'll see each other there.
So smile when you think of me
and wipe away all of your tears
I'm cuddled now in heaven
By our family members here.
I'm waiting here in heaven,
And on the day we meet again.
I'll be the first to smile and greet you,
When God calls you home to him.
~ Charlotte Collins

You held her hand and stroked her head and sat by her side telling her it was going to be ok. She knew and loved her mama just as much as you knew and loved her! ----

She knew you were there and she felt your love! I am so glad you are remembering the things you did for her. -----

HE will tell her how HE chose YOU to be her mommy and chose Kevin to be her daddy because HE knew you would love her and take care of her ... No matter what! HE will then tell her how much you loved her! May God continue to bless you and your family.-----

Look back and Thank God, Look forward and Trust God, Look around and Serve God, Look within and Find God. -----

It is really hard to know exactly what Averi looks like under all that tape and those tubes, but I think that babyangelpics.com did a pretty good job. It is such a wonderful service. We never got to see what Averi looked like without all the stuff on her until the night she passed and she was so very swollen. Thank you babyangelpics.com for giving us an idea of what our angel Averi looks like.

Glad to be Averi's mommy

2010-01-09T01:03:00.000-08:00

I am so glad I got to be Averi's mommy for 28 days.... There were days that we were not sure what was going to happen and we worried so much but I still got to be with her for 28 wonderful long days and for that I am so grateful.

I have read some other blogs and heard some other stories of mom's who have lost babies in 1 day, 10 days, and know of one who was 8 months pregnant when she lost her baby. These stories make me grateful that we got to spend every one of Averi's 28days with her. So many of our prayers were answered, she was such a blessing. The heartache and pain of losing her does NOT overshadow the joy I felt while she was here. If I had it to do over again and I knew the outcome I would still choose life and to have her even though her life was short. She made a HUGE everlasting impact on my life and the lives of so many others. Now she is in heaven with the Lord, and we will see her again.

Lord please tell my Averi how much I miss and love her and that I think of her everyday, Amen.

6 week postpartum check up

2010-01-07T22:39:00.000-08:00

Doc doubled my prozac dosage and hooked me up with a support group of parents going through the same thing. I am hoping they have a group available in this area because this group is based in Sacramento.

I had to repeat some tests due to some concern, when I was pregnant with Averi I got a pap that came back with abnormal cells. It will take a week before I get the results back... worried. I also had to go to the lab to test for a UTI.

Also have to search for a new ob/gyn because of insurance issues... not a fun day. So I will have to explain everything that has happened all over again.

The pain of losing Averi seems to deepen each day. I feel like I am in this fog, I want the world to just stop for just a little bit, but I have 3 kids that need me and need to be taken care of so there is no stopping. I want Averi back, this pain feels like more than I can bare at times....

Feeling bad...

2010-01-06T22:22:00.000-08:00

So I have have my 6 week postpartum check up tomorrow (really it is just past 5 weeks since I gave birth to Averi) soooo not looking forward to it, and I think I have a bladder infection (so very uncomfortable), I have a migraine and MOST of all I miss Averi so much... life today is a big bucket of sucks... Told ya guys my posts were gonna be downers for awhile

I really wish I was holding my baby right now. I wish I were nursing Averi right now. Dressing her up, burping her, loving on her. I know she is content in the arms of Jesus, but I am not I am here and it is not fair that i don't have her here with me. This heartache is like none I have ever felt before. I know she is not suffering or in pain, but it is still so unfair and I don't understand. I know I will learn from this and Averi has already taught me so much. I have a new appreciation for life and for the gift of a child and being a mom. I am a better person, mother, and wife because of Averi. It just hurts.....

Kevin's words at the service

2010-01-05T17:23:00.001-08:00

Daddy’s Little Angel
Before Averi was born, I had never had my faith tested. Praying was something I did when I wanted the 49ers to score, or I was late for work and did not want to deal with traffic. Promises that I would make with no real conviction, to make me feel as though I had all my bases covered.
Then there was this little girl vibrating on a bed, with tubes all over, some pushing things in and some taking things out. I was truly helpless, what was I to do? I know…I will barter with Jesus…I mean everyone has been talking about praying and maybe if I truly promise to be good, a better Christian, stop just speaking the word and actually living it then maybe…maybe Jesus would let me bring her home.
So there I sat, learning about every machine she was on, researching every medication that they put in, refusing to leave her bedside, just stroking her head, and letting her know that her daddy was there. I loved to read to her, and hold her little hand. The way that she would look at me with those beautiful blue eyes, I could tell that she was a fighter; all the nurses would tell me that they had to up her sedatives because she refused to stay still. I was so proud of the fight that she was putting up and encouraged her all the way. I started to actually believe that she was coming home; it looked closer and closer every day.
But that was not his plan, and I did not understand why. Why would he take her away from me, what happened? Did I do something wrong? Did I pray wrong, did I not pray enough? No, that was not it at all, Jesus was answering prayers, Averi had made a difference in this world, and although the pain of our loss is great, the joy she brought me is greater. She made me want to be what I promised Jesus I would. And this whole time I was thinking I was bringing her home but now I see she was the one bringing me home.

Thank You All,
Kevin

Mommy to Averi.... Averi changed my life

2010-01-05T17:07:00.000-08:00

Averi I will never forget anything about you. Your big huge blue eyes, all that dark hair, your super long fingers and toes, your long skinny feet, your cute chicken legs, your adorable button nose. I longed to hold you, to wrap my arms around you, to make it all better, to hear you cry, to change your poopy diaper, to dress you up, to kiss your cute little lips. I knew that even though I couldn’t hold you that Jesus could. We prayed so hard every day for anything and everything we could think of so that you may be able to come home with us. God answered so many of my prayers, we got to be together as a family on Christmas, and we were all able to be there until you went home to be with Him. You were a stinker from the very beginning. During ultrasounds and the MRI you moved so much that the technicians had to get creative to get the information they wanted. The week before you were born you decided to be breech. The day you born you decided you didn’t want to come down. The nurse would try to turn your head after you were born and change your position and you, very heavily sedated, decided you liked it the way it was and turned your head back. While on ECMO, on sedation and a paralytic, you still managed to move your arms and legs, and a few times moved your head ever so slightly enough to freak the nurses out, and they would rush around trying to figure out what else they could give you because you were maxed out on your meds already. The nurses, surgeon, and doctors all joked about what a little high maintenance princess you were. When I think about what you are doing in Heaven I imagine you riding a cloud opposite the direction of traffic, and just saying “oops, excuse me, sorry” like the little princess stinker angel you were here on earth. I am so thankful that I got to be your mommy, I miss you my beautiful little girl. I love you my sweet Averi and can’t wait to see you in Heaven one day.
--------------------
Averi has changed my life forever. I was trying to figure out how best to summarize that because of her I am a better person, and was unable to without crying. I decided to take a break and post some service information on Facebook and read this message from one of my friends that to me explains How Averi has not only impacted my life but many others as well.

Gina West wrote:

"Teresa, I truly became so very attached to Miss Averi through all your updates, my heart aches at your loss. Please know how much she has affected my family in the most amazing way. We have slowed down...we read more books, we take longer walks, we hug tighter, laugh harder. I will no longer get upset if the glass gets knocked over at the dinner table, or if things don't go just as I think they should. Because of Miss Averi, I am a better mother & wife. We are a stronger and much more thankful family. God Bless Averi and I can never Thank her enough."
---------------------
Everyday I learn about someone else who was affected by Averi... she was an amazing little girl.... To hear that she has not only changed my life forever but many other lives as well, makes dealing with this a little easier... Thank you for sharing with me how Averi has changed your life. Keep them coming they are true blessings to me..

Thank you to all who have taken the time to leave encouraging kind words, and prayers for us. It means so much to all of us.

2010-01-05T01:05:00.000-08:00

My sweet angel Averi....I miss her so much. I love you baby girl.

thank you

2010-01-05T01:00:00.000-08:00

I would like to express how thankful I am to everyone who came, from near and far, today, and those who were there in spirit. I cannot say enough how much I appreciate your love, support, friendship, words of encouragement, and prayers. I am truly and deeply touched by everyone who has been impacted by Averi. Thank you from the bottom of my heart. Thank you to all who ordered flowers. Some did not come home with me and some did not have a note so i dont know who they were from. Please accept this as my heartfelt thank you.

Finalized Service Information For Averi

2009-12-30T19:38:00.000-08:00

We have finalized plans for the service it will be on Saturday January 2, 2010 at 2pm location is 1505 Moffat Blvd. Manteca, CA 95336. We would like anyone who was touched by Averi to please join us.

A few people have asked where they can send flowers or cards. The address you can send flowers or cards is 14515 Arapaho Way Manteca, CA 95336. Or you can make a donation to your charity of choice in Averi's name.

Thank you all for your encouraging words during this difficult and trying time for our family.

Memorial Service for Averi

2009-12-30T18:08:00.000-08:00

A memorial service will be held for Averi Hope on Saturday January 2, 2010 at 1505 Moffat Blvd. Manteca, CA 95336 we havent finalized a time but it will be in the afternoon. I will post the time as soon as we have that finalized.

I would to thank everyone for their kind comments, it has been a blessing.

Averi went home to be with Jesus....

2009-12-29T20:16:00.000-08:00

I have no words.... I cannot say them without crying... My heart is just broken...
My sweet Averi Hope went home to be with Jesus at about 8:30pm last night....

Her little heart just gave out... it worked so hard for a whole month and just couldn't work anymore... She let us know she was soooo tired... Her body just wasnt responding to any medicine they were giving her anymore... We got to be there before she passed and I am thankful I was there. God blessed me by letting me say goodbye before she went home with him. We are hoping to have a service for her this Saturday. I will post the details once they have been finalized. Thank you to everyone for all of the prayers that are being said and have been said. Your comments, prayers, love, and support have meant so much to us and have truly been a blessing.

URGENT...

2009-12-28T19:55:00.000-08:00

Head guy is changing ET tube and is afraid she won't survive it. Please stop what you're doing and pray for Averi right now! ♥

She's gonna need a new nickname!

2009-12-28T19:22:00.000-08:00

Kevin saw an x-ray of Averi's lungs, and it is NOT walnut-sized. It is now HALF the size of the other lung! The doctors are very happy with this, and so are Kevin & Teresa! They have not changed the ETT yet, just a connector so far, and she is taking time to recover from even that. The worry in changing the ETT tube is that the lungs will collapse from being extubated, and then they'll have to start the reinflating thing all over again. They have ruled everything out except something clogging the ETT that the suctioning tube can't get.

28 days old...

2009-12-28T17:08:00.000-08:00

SPECIFIC PRAYER REQUEST... Pray for the equipment... machines, hardware, software, tubing, wires, etc. that are being used on Averi. Just as progress is being made, it seems that another equipment failure happens.

Averi's sats are currently in the 80s. They think something is partially blocking the ET tube. They've been avoiding changing it, but it looks like they may have to!

Continue to pray for Teresa, who now has a cough and sore throat. It's hard for her to be away from Averi and not getting first hand reports. That goes a lot like the game of telephone.

An ET Tube is a tube that is inserted into the baby's trachea down to just above where the lungs bifurcate. (So it doesn't actually go into the lungs...) The top of it sticks out of the baby's mouth and is attached to the ventilator.

Here's a diagram...

After intubation they usually use an x-ray to be sure the tube is placed in the correct spot.

Pictures!

2009-12-27T22:57:00.000-08:00

Daddy giving Averi a kiss from Mommy when she can't be there...

I'm not feeling well...

2009-12-27T22:40:00.000-08:00

It is so hard not being able to go and see Averi. I was concerned that I was coming down with something, so I didnt go in her room yesterday. The discoloration in her belly is way better. The doc said she is doing better. They tend to be very conservative with comments like that. I am just thanking the Lord for my children.

Not being able to hold Averi or even hear her cry at all since she was born has been hard. We continue to take things one day at a time, though.

27 days old...

2009-12-27T15:07:00.000-08:00

Averi is still critical, but stable. It takes her a bit to recover from things like x-rays and dialysis circuit changes, but as days go by it seems like it is taking her less time to bounce back. They now think that one of the hematomas in her liver is stable, and the other has only grown minimally.

The kids got to see Averi briefly on Christmas Day, but they and Teresa are now showing signs of being sick, so they are all staying away. (Kevin is with Averi.)

...and GREAT news! The left lung has expanded! Kevin heard "good left lung" from one of the residents during rounds last night, and that there are equal upper chest breath sounds.

Pray for Teresa to be healthy, for the other kids to be healthy, and for Averi not to pick up any germs that might be in the air. Pray for continued lung expansion/growth, and increased stability.

26 days old...

2009-12-26T19:04:00.000-08:00

(This is as of about 11:15am today) Averi has hematoma in her brain, not actively bleeding and not worse since yesterday. It is on the part of brain that controls motor, but she is still moving/responding. She is too critical to do MRI at this point, though. They have put her on antiseizure meds, and she is being weaned off of Milrinone (a med that was to help with blood flow to extremeties.) BP, HR, sats are good, blood gases have been good.

The Gaynors had a nice time yesterday spending time with their older kids.

Thanks for your prayers! Please continue.....

...and here's a picture of the ECMO machine being wheeled away:

worst day of my life....warning this is a long one

2009-12-25T07:36:00.000-08:00

Honestly, I can't say that I believe that is the last time I will say that. Averi was really rocky coming out of the decannulation yesterday but seemed to stablize around 4pm. Her cardiologist came in after surgery looked at her then listened to her heart and left the room. He never said a word to us. Kevin asked Dr. Pretzlaff what Dr. Van Gundy's thoughts were, and he said the concern is that there was so much pressure on her heart because her lungs were still so hypertensive that it was causing the left side of her heart to be compressed.

A short time later Dr. P came back and said that we were making some head way with her stability but there wasn't much more that they could do with the vent or meds and it was a possibility that her heart could stop. If that happened it would not benefit her to do cpr to bring her back and basically would we sign a DNR. I could not believe that he was asking me this with things being so rocky after surgery for anyone why would she not be worth trying to save during this difficult recovery time. I told him I couldn't answer that and just cried and prayed at Averi's bedside.... and cried and prayed. I was so torn between wanting my baby and feeling like maybe I was being selfish. She was stable and the nurse said we needed to take a break, eat something and talk. We did so and came back.

We walked in and not even 5 minutes later her blood pressure shot up and her heart rate dropped and dropped. The nurse froze and called another nurse, who called the nurse in charge, who called a doctor. He told them to administer some drugs (one that keeps the brain from bleeding)and something else (dont remember what). This doctor just walked in the door for the night shift. The nurse called out and said pupils are fixed and dialated...nonresponsive. She then took the time during this to ask about the DNR if her heart rate dropped again. I told her no! She rolled her eyes and walked away. Something in my heart just blurted out NO!!! The doctor ordered a blood gas and they checked her blood sugar. It was way high. Her blood pressure and heart rate seemed to stablize.

The doctor said it was one of a few things, one he ruled out pretty immediately, the other 2 were brain damage because her brain was not telling the body to produce carbon dioxide anymore (the blood gas showed it was way LOW after being way HIGH) or it was her lungs just deciding to work which triggered the way low CO2 which then caused the lungs to constrict putting way to much pressure on her heart causing the dropped heart rate and high blood pressure. If it was brain damage there was nothing they could do. The nurse that asked about the DNR said again pupils are fixed, dialated and nonresponsive.

We sat there in the room for a while and I decided we needed to be together as a family, so I told Kevin I was gonna go home take a nap wrap gifts back up the car and we were going to spend Christmas as a family at RM House. He was going to stay and update me on ANYTHING that happened.

I got in the car and just began to sob, scream, hit the steering wheel. Then I began to pray, pulled myself together, turned on my worship music, drove and prayed some more.

Kevin then called me and said that the vent change the doctor ordered during the whole ordeal showed a difference in her CO2 and so they ordered another vent change and blood gas. That showed another change in the levels and the doctor was sure it was that her lungs just decided to work. Her blood gases continued to show improvement with each change they made to the vent. Thank you Jesus!!!

I am sure that this is not the last time I will say this but GLORY TO GOD!!!!! I still have my daughter, she is stable for right now. Thank you for all the prayers.... I cannot say this enough. Thank you thank you thank you!!!!!

All of that being said I want to thank all of those who had a hand in providing a special Christmas for Alex, Kylie, and Ian. I came home to a beautiful tree with presents wrapped under it, food in the fridge and pantry, and a clean home. I cannot say what a HUGE blessing this has been. It has been a rough 3 weeks and it is not over yet, but this was a huge relief to me, and made a huge impact in our lives. God Bless you!!! Pictures of Christmas smiles coming soon.

More...

2009-12-24T13:12:00.000-08:00

I don't want to be a pest, but I know how much you all care for this family.

Averi's carbon dioxide level is way too high, and her color isn't good. They've been making small changes here and there to figure out the right combo.

They are also giving her a blood transfusion.

Please pray for her little body to be able to exchange oxygen and carbon dioxide. Breathing... one of those simple things that most of us do without thinking, and probably take for granted at least most of the time.

Updates on Decannulation...

2009-12-24T12:42:00.000-08:00

11:11am--They came out and told us she is not doing well and then came and said she was doing a little better.

11:18am--Surgeon just came out. She made it through, but she is just ok. Sats are a little low and BP is low.

12:40pm--They are trying to find the perfect position for the ET tube. They changed her head position and such. Things still seem rocky though, but maybe it is just her getting stable again.

I don't want anyone to panic, as it can take some time after getting off of ECMO to figure out what the baby is "liking," but by the same token, I don't want to diminish what is going on either. Coming off of ECMO was a huge step, but Averi is still in critical condition. As Teresa said, "PRAY, PRAY, PRAY!"

A setback...

2009-12-24T10:09:00.000-08:00

OK, prayer warriors... one minute after I posted that last update, Teresa said that Averi's blood pressure was way low and that her pulmonary pressures are high. I don't know why the sudden change. We know she doesn't like to be messed with...

Bye bye ECMO!

2009-12-24T09:53:00.000-08:00

They are bridging right now! Averi did well overnight. Teresa says, "Michelle [her nurse] was 'freaking-out-excited' because her blood gases were coming back soooooo good last night." She was down to 150 and then down to 120 with NO oxygen from the ECMO. The only oxygen Averi was getting was from the ventilator! It's looking like they will proceed with the REMOVAL OF THE ECMO a little after 10!

This is Averi's 3rd surgery. It usually doesn't take long. Once she is removed from the ECMO, she is certainly not out of the woods. She is still critical. But removing ECMO and all that heparin is a HUGE HUGE thing. Praise God! (And pray for Averi while she's in surgery! -- Though I'm sure I didn't need to say that!)

The "p" word...

2009-12-23T21:51:00.000-08:00

When our family went through this CDH battle, we would (and actually still do) talk about the "p" word. We got to the point where we didn't really want to say the word "plan" out loud anymore, because most assuredly it would be changed umpteen times between the time the plan was uttered and when the final action was executed. We also ended any timeframe with the "-ish" ending. (i.e. today-ish, soon-ish, noon-ish, etc.) The Gaynors are experiencing a bit of that now.

So since my last post, here is what was "decided" upon:
• Averi would be decannulated (with no bridging) if she tolerated the ECMO setting being at 150 tonight. She would remain on dialysis, which entails putting a dialysis cannula in place of the ECMO cannula in her neck. This would require a smaller amount of anticoagulants than the ECMO circuit did, because it is a lower amount of blood used. Additionally, they can switch to a different drug that would anticoagulate the machine... not Averi.

• Nurse said they would bridge tomorrow or the next day. The head doc will be in tomorrow and will make the call, so maybe the decannulation won't happen at 10am.

• Nurse definitely thinks the decannulation will happen at 10am if Averi does well overnight because the surgeon had already talked to the head doctor.

So she could quite possibly maybe be decannulated at 10am tomorrow-ish. Stay tuned on that. (But pray at 10am PST just in case she's in surgery!)

On a fun note, Averi has a couple of new nicknames! Her left lung is the size of a walnut, so she has been called "walnut" on more than one occasion. Hey, if people can call their kids "peanut," I think "walnut" is perfectly acceptable! A couple of the nurses around there have "adopted" Averi and have taken to calling her "Snookums." Averi even got her first little heart barrette the other day. :)

Scratch that...

2009-12-23T16:41:00.001-08:00

They just did another x-ray, and I guess the results of the x-ray were good, so they're saying that if she tolerates 150, they're decannulating her tomorrow! No bridging/cross-clamp.

Teresa said that the x-ray showed that the right lung has opened up more and is clearer than it has been. She said the left lung has had no activity and that she couldn't even see it. Pray for that lung to expand! Everybody go blow up a balloon for Averi! ♥

More news!

2009-12-23T16:32:00.001-08:00

I'm sooo thrilled to report this latest news!! Averi did great with the circuit change, so they have weaned her down to 200 on the ECMO. They are hoping to wean do to 150 and bridge (cross-clamp) tomorrow to see if she's ready to be off of ECMO!

23 days old (DAY 12 on ECMO)

2009-12-23T15:14:00.000-08:00

Backing up... the surfacant wasn't given until today... They had to change the circuit again due to some issues they were having. Typically that happens every 7-10 days, but Averi is on day 12 of ECMO and has had two circuit changes.

Due to the circuit change, the ECMO weaning has been temporarily suspended to let her recover. Babies often have an inflamatory response to the new tubing and equipment that their blood is coming in contact with, so this is just a precautionary measure.

The dialysis machine has been switched. Praise God for Michelle, their favorite night nurse, who stood up for Averi and said that she just had no more fluid to give! Because of that, no fluid is currently being removed.

22 Days old (DAY 11 on ECMO)

2009-12-22T15:43:00.000-08:00

Here's an update... I may need to clarify some of this later... as I was talking to Teresa, Kevin called her back in because there was an urgent issue he needed to discuss. I have no idea what that is, but you can be praying...

They were about to inject surfacant into her lungs. Pulmonary surfactant is an oily substance (a mixture of lipoprotein molecules) produced by the cells lining the alveoli. All parts of the respiratory system are coated with a thin watery layer. The surfactant coats this layer and reduces the surface tension within the alveoli. This helps keep the alveoli open for gas exchange.

The attending physician in the NICU would like to wean the ECMO tonight in hopes of doing the bridging tomorrow. They would like to see her come off of ECMO this side of 14 days. The doctors in the PICU differ with this decision and would like her to rest more before doing the bridging. Teresa & Kevin's prayer is that the two groups will come together and reach some consensus.

They will be doing an ECHO tomorrow to check on her pulmonary hypertension levels.

Averi's blood pressure is better today. The issue with the right side of the heart that I mentioned the other day is that the hypertension was stressing that side of the heart too much, and they didn't feel that her heart would be strong enough to handle being off of ECMO. That problem seems to have resolved.

Teresa has some concern about the dialysis. The doctors are saying she is still +4 liters from where she should be, (I start envisioning 2 2-liter bottles of soda...) and the nurses don't see how that's possible. We just don't want them to take too much fluid off!

As far as I know, Averi is stable, her lungs are continually expanding, and she is still on the high frequency ventilator with iNO. I didn't get a chance to ask her how the liver is doing. As Teresa said, our hope is NOT in the doctors, the hospital, the medications, or the machines. Our hope and faith is in the Lord, who uses all of the above (or not, if he chooses that!) to accomplish HIS purposes.

As always please pray for the doctors to have wisdom in the decisions being made for Averi... that everything will be done at precisely the right time and in the right order. Pray for Averi's little body to be strong and feisty as she fights! Pray for the entire family. As we head into Christmas, and the family is separated by a few hours, I am sure that their other children are having a really difficult time. Thanks, everyone! I'll let you know if I hear anything else!

Three weeks old... (DAY 10 on ECMO)

2009-12-21T19:29:00.001-08:00

I thought I typed some of this out earlier, but I guess I didn't! So this will be a longer post!

Teresa reported earlier today that Averi was doing better today--a lot better--with the change of the ECMO machine. The cardiologist came in and also said she is doing better. The attitude of everyone is more upbeat, but they continue to take things one day at a time. Her right lung is more open. The ventilator settings have been increased. They are not taking her off of ECMO today as previously discussed in the "72 hour plan."

Averi has continued to improve today on the new ECMO circuit. Her lungs have expanded more, the ECMO pump has now been weaned to 250, and the ventilator has been turned up. They are now talking about ECMO bridging (some hospitals use the term cross clamping.) in the next few days. They clamp the tubes so that the machine stops doing the work for her, leaving Averi and the ventilator for a few minutes. They see how she does, and usually clamp and unclamp several times. The blood gasses will tell them how she is doing with just the ventilator. Being at 250 is really good! Again, my only frame of reference is our daughter, who went from 270-140 on the day they did her cross-clamp test. If Averi does well with this, then they will take her off of ECMO soon after that.

Another thing is that she is now finally fluid negative! This will help give her lungs more room to expand.

In all of this, they are learning (again) that Averi does not like change, and that making minute changes and taking longer to do something is much better than rushing her and eventually starting all over again.

Pray for a quiet, peaceful night for Averi. Pray for their other kids... Alex, Kylie, and Ian. This has been really rough on them, as you can imagine!

20 days old (DAY 9 on ECMO)

2009-12-20T20:20:00.000-08:00

I don't have much of an update. They changed the ECMO circuit today, and they have been having some very important talks with doctors as to next steps. Things are very, very tenuous, and your prayers are needed more than ever.

A "circuit change" is when they replace all the tubing and primer blood used in the ECMO. They remove baby from ECMO for like a minute and reconnect her with the new stuff. Sometimes it can cause a baby to get a little worse before she gets better, since they often have an inflamatory response to the new tubing and equipment that her blood is coming in contact with. In Averi's case, her oxygen levels were better since the circuit change. Usually a circuit change is necessary every 7-10 days.

One additional tidbit is that her lungs are looking better. She is having blood pressure and heart issues. (Something to do with the right side of the heart, but I don't know any more than that!) Additionally, the liver continues to be a concern.

Pictures with Mommy & Daddy

2009-12-19T18:25:00.000-08:00

Kevin with Averi when she was 2 days old...

Teresa holding her little one's hand. It is so hard on (especially) a Mommy's heart, knowing that there is absolutely nothing she can do but hope, pray, and hold a hand...

♥ ♥ ♥ Update ♥ ♥ ♥ (19 days old, day 8 of ECMO)

2009-12-19T16:00:00.000-08:00

Averi seemed to stabilize yesterday. They are still trying to get some fluid off, but are only able to get 10mL/hr using the dialysis. She seems to be tolerating that more than she was the 20mL/hr setting. Teresa doesn't think she looks that swollen compared to some other ECMO babies she's seen. Most of the swelling is from her liver.

They did an x-ray this morning, and her right lung has opened up a lot more. Praise God!

Another concern that Teresa has had is Averi's eyes. She said that they were open pretty much all day yesterday, but not blinking or anything. They asked them to tape them shut, and they put this gel patch on her last night, and her eyes are almost all the way closed today. So that's better, too.

I asked Teresa for very specific prayer requests. I really feel that we need to pray very specifically! This is what she said:

• Stable blood pressure as they remove fluid. We know from previous experience that Averi doesn't tolerate things when her fluid levels get too low too fast. Pray for wisdom for the doctors and nurses as they make decisions concerning fluid.

• Expansion of lungs. The right lung has expanded quite a bit, but so far the left lung has not. Pray for that little lung to be full of air.

Teresa & Kevin have decided to take things one day at a time and celebrate each day that they have with their daughter. Keep them and their other kids in your prayers, too. I know that they appreciate each and every one of you!

The new plan...

2009-12-18T15:40:00.000-08:00

The current plan is to put Averi back on the HFOV (it's already been done) in hopes of getting her off of ECMO within 72 hours. She is still on diureic drugs and a low setting of dialysis to work on getting the excess fluid out. Once they get to the point where she is off of ECMO, they will not put her back on. It will be up to Averi, the ventilator, and most importantly God. Thank you for your continued prayers!

Friday morning (18 days old-DAY 7 on ECMO)

2009-12-18T12:45:00.000-08:00

When Teresa and Kevin got to the hospital this morning, Averi's color was very bad. She is also continually awake, despite the fact that they are giving her sedatives that should be helping her rest. The doctor is now saying that things aren't going well and that he wants to consult with some other doctors. The main issue right now is the hematoma in the liver. It is still bleeding, but there is nothing they can do about that while she is on ECMO because of the heparin.

Please stop right now and pray for these doctors as they meet... that the Lord would give them wisdom and understanding. That He would cause them to seek advice outside of the hospital if there are experts out there that can help with this situation.

And lastly, pray for Teresa and Kevin. Pray that they would be given strength beyond measure and peace that passes all understanding.

2009-12-17T23:32:00.000-08:00

Teresa just texted. The roller coaster continues... Averi's blood pressure has dropped again, and the pulses in her extremities were weak, so she is back on the dopamine and they are pushing fluids. The doctors told them that this might happen immediately following the connection of the dialysis, but of course Averi didn't read the play book, and she decided that a few hours later was better!

Just before her BP dropped, they had reached the "fluid negative" goal. So the dialysis was working, but for some reason Averi isn't tolerating it.

Now they are looking at the ECMO machine itself. (Both of her nurses, the doctor, and the ECMO perfusionist have been in the room trying to see if the ECMO machine itself is causing the flow problem.)

Teresa is concerned and would ask people to pray that Averi is not in pain. She said that Averi has had an eye open this entire time. Also, WISDOM for the doctors and all involved in making decisions. Thanks, everyone!

Dialysis is in place...

2009-12-17T21:21:00.000-08:00

This update is a couple of hours old, but I thought I'd go ahead and report it anyway. (Sorry! I was away from the computer)

They have the dialysis set to remove 20mL fluid/hr. When I last heard from Teresa, it was working well, and they even took her off of lasix (the diuretic). The doctor assured them that Averi's kidneys are FINE, and that she would only need this for a couple of days to take the stress off of her kidneys. All of the excess fluid is making it difficult for the lungs to expand. The hope is that once all that puffiness is gone, the lungs will have more room!

What I found interesting, as I was trying to figure out how this contraption worked, is that it is actually (somehow) removing urine from her blood. I was amazed to learn that. I guess it makes sense, since that is the job of the kidneys!

Keep praying!

I will leave you with pictures of her new technology...

This is the new dialysis machine that they basically add on to the ECMO circuit.
And THIS is Averi's "stuff." Believe it or not, all of that equipment is for her! The lightened area in the middle is Averi's bed.

Thursday morning (17 days old-Day 6 on ECMO)

2009-12-17T13:14:00.000-08:00

I just got a text from Teresa indicating that they are worried that there is bleeding in the liver. I don't know the details as to why they suspect this. They are adding a hemofilter to the ECMO machine. Teresa hasn't talked to the doctor yet... just the nurse. Teresa said she's scared. :(

A hemofilter is a type of dialysis that helps to give the kidneys rest. (which will also help get rid of fluid.) The bleeding in the liver is a hematoma from surgery. It can't resolve itself until after ECMO is removed. They haven't changed anything in the vent settings because they want to let dialysis do its thing first.

Wednesday night (16 days old-Day 5 on ECMO)

2009-12-16T23:10:00.000-08:00

Averi started peeing again, but she's not fluid negative yet. The doctor said the plan is to adjust the ventilator and see what her lungs do. They also plan to do an ultrasound on Friday to check her pulmonary hypertension.

2009-12-16T17:21:00.000-08:00

Averi did not have a quiet night...After all the progress she made yesterday, she stopped peeing. She is now on a steady drip of lasix instead of separate doses. Her blood pressure fell again, so she is back on dopamine. The good news is that she is back down to 70% oxygen! She was at 100% yesterday. Keep praying for her to pee and that we get to that "fluid negative" place. Her belly has a lot of fluid in it within the tissues, and they are keeping a close eye on it.

Even being as sedated as she is, Averi still has to keep an eye on everything that's going on!

Small update...

2009-12-15T22:33:00.000-08:00

They upped the oxygen for Averi. The doctor wants to let her lungs rest and not push her too much. The top of her right lung is starting to open up! There is still a lot of fluid that they want her to pee out. She is on lasix and another med to help with that. In these situations, they look at the fluid input/output ratio. Since she has extra fluid, she needs to be peeing more than what they are giving her in the way of fluids. She is being fed through IV, and Teresa said that they were going to start concentrating her fluids. She is getting really close to being "fluid negative," which is a GOOD thing! Keep praying!

Picture!

2009-12-14T21:02:00.001-08:00

It's me

2009-12-14T13:49:00.000-08:00

Hello, I finally have a moment to write in the blog myself. I must say a HUGE thank you to Tricia for what a tremendous job she is doing on the blog and Facebook updates (keep up the great work), as well as just being a huge resource for my questions. Tricia, I am so grateful that you are in my life and that God has blessed me with such a wonderful friend.

Things don't look great today. We called the nurse about 10am and he said that they tried during the echo to wean her ECMO and her hypertension is still there, so they had to restore the setting to where it was at. They are also concerned about the coloring in her legs. They are watching it. The lower abdomen swelling is also an issue. They are watching it. The xray showed that her left lung is almost completely collasped. She they increased one of the vent settings to try and inflate it more.

I want so badly to bring my baby home. The unknown is killing me. I know God is trying to teach me to have faith, trust, and hope in Him. To leave it in His hands, I have never felt at the mercy of anyone, and I feel at the mercy of everyone now. Ok, I just realized I haven't taken my medicine. I will not keeo rambling on but when I read in other blogs the personal feelings of the parents I related and felt relieved and not so alone.

Thank you for all of the continued prayers. God has truly blessed me with amazing people praying for Averi!!!

Another update...

2009-12-13T17:29:00.000-08:00

Averi is off of dopamine and sustaining a good blood pressure on her own. They have weaned her on the oxygen a litle more, and she is satting at 100. They are going to do an ultrasound to check for pulmonary hypertension as well as an x-ray sometime in the near future. The doctor said she is moving in the right direction, and the nurse said she has had a great day! Praise God!

Day one of ECMO DONE!

2009-12-13T17:28:00.001-08:00

It looks like Averi has gotten past the first day of ECMO. As of right now things look good, she seems to be peeing (OK...but not great), they have already started to wean the O2 on the ECMO, and she seems to be tolerating it. This indicates that she may only need to be on ECMO for 5 - 7 days. Her cultures came back positive but we are not sure what the infection is, we have to ask the DR. but she is on antibiotics.

Even though she's completely sedated, she still has to open her eyes to make sure Mommy and Daddy are still there!

Day 1 update...

2009-12-12T15:22:00.000-08:00

Averi is pretty much the same as yesterday. So far things are good. Her blood pressure was up and down this morning, but they have found the right balance of settings and it has stabilized. She is now on morphine because she moved her legs a little. Her sats are also fluctuating a bit, which is also normal.

They did find out that the stomach, bowel, spleen, and a small amount of the liver were up in the chest cavity.

Averi has had her first post surgical chest x-ray, and it showed that her right side was worse today than it was yesterday. The nurse said that she probably needs a chest tube, as the lung is hazy with fluid, but right now it is too risky because she is on heparin. The benefit doesn't outweigh the risk, so they are keeping an eye on it. (I should probably mention that nurses often have opinions on things and that those opinions may or may not reflect something the doctor has said... so this doesn't mean the doctor is wishing he could do a chest tube.)

To treat the fluid in the lungs, they are suctioning periodically, and also giving her a diuretic called diamox. Right now she is peeing really well, and her input/output ratio is good. (They know how much fluid is going into her, and they weigh all of her diapers to determine how much is coming out. If the output is more than her input, it indicates that some of the excess fluid is being drained.)

The doctor came in to take over for the ECMO nurse while she went on break, so Teresa and Kevin were able to pepper him with questions and get answers. He has a plan of attack, and at this point he is really happy with where Averi is. T & K are satisfied with the plan, too. He showed them the x-ray, and at this point, it doesn't look like she has much left lung at all. However, both the surgeon and the pediatric attending physician were optimistic about what they saw during surgery. That might mean that there is more lung there but that it hasn't expanded yet. PRAY for that little lung to grow and fill with air!!

Pictures of the ECMO Pump

2009-12-11T19:31:00.000-08:00

You can see here the difference in color between the venous and arterial blood...

Out of Surgery!

2009-12-11T16:49:00.000-08:00

The surgeries were a success! The surgeon said Doctors said that Averi is more stable now than she was before surgery. As I said before, they put her on ECMO first, and then did the repair. They were able to do a primary repair, which means that they just stitched the hole closed! This is awesome because it means that she won't have to have a later surgery to replace a patch that won't grow with her body. Her lungs were a little beat up and there was little blood loss. Following the surgery, they moved Averi, ECMO machine and all, to the PICU, where the princess gets to have her very own room!

Here is a diagram of the ECMO contraption... the machine is actually huge, but this gives you an idea of what the circuit does:
Basically there are two cannulas in the neck. Blood is taken out of one of them, cleaned, oxygenated, warmed, and then it is put back into the baby via the other cannula. Interestingly enough, you can see the color change in the blood after it is oxygenated!

The next 48 hours is absolutely crucial. Keep in mind as you read the updates that most babies get a little sicker before they get better. The ECMO is a scary thing to think about. It is the biggest fear that every CDH parent has. Truly, though, is a lifesaver. It will give Averi's lungs a chance to rest, expand, and gradually start working on their own. Kevin and Teresa felt overwhelmed at their first glimpse of Averi. The tubes of blood are about 3/8" in diameter and run several feet. Pictures really cannot prepare you for what it is like in person.

Over the next few days, they'll be running lots of tests to determine how much lung she has on the left side, watching it to see if it expands, and do ultrasounds of the head daily or every other day to make sure there are no bleeds. (There is heparin, a blood thinner, in the ECMO circuit, which means that they have to be super careful to make sure no bleeding occurs. They don't even like to poke the skin with a needle!)

They will also continue to run periodic blood gases, which will determine when they start weaning her off of the ECMO pump. You will probably start seeing reports of "numbers" associated with the ECMO pump. The target number is usually 120-100 before they start talking about taking a baby off of ECMO. My daughter's beginning number was 400, and she was on for 7 days. I'm not sure what number Averi is starting at!

∞•∞Specific prayer requests∞•∞

> As Megan said on Facebook, ECMO is hard on the kidneys. The kidneys depend on the beat of the heart to function. Since ECMO is doing the job of the heart and lungs, the heart doesn't beat at the normal rate... It almost stops. So pray that the kidneys remain functional.

> Bleeding. Pray that there will be no cranial bleeding!

>Pray that as Averi's lungs have a chance to rest, that they will start doing some of the work on their own. As she does this, the ventilator will be turned up and the ECMO pump will be turned down. (While on a high degree of ECMO, they don't use much ventilator... just enough to keep the lungs from collapsing.)

> Eventually we want them to be able to hear some crackling in the lungs which means they are waking up! We also want the pulmonary hypertension level to reduce!

I will update with more specific information as I get it, but this should get you going for right now! :)

Update...

2009-12-11T13:32:00.001-08:00

ECMO part of surgery is done... she's doing well with that. They are now beginning the repair.

Plan change!

2009-12-11T12:46:00.001-08:00

The doctors have decided that it would be best to go ahead and put Averi on ECMO and then attempt the repair rather than start the repair and have ECMO as a reserve.

They're going in, putting her on ECMO, watching to see how she responds, and if she responds favorably, they'll go ahead and do the repair.

Specific prayers for this... As I've mentioned, they have to use heparin (a blood thinner) in the ECMO circuit. Consequently, surgery while on ECMO is inherently riskier.

I'll just leave it at that for now. I'll let you know when I hear anything new!

•∞•∞• TIME CHANGE!!! •∞•∞•

2009-12-11T10:19:00.000-08:00

Averi's surgery has been moved up to 11:30am.

She didn't have a great night. They made lots of ventilator changes, and Averi didn't respond well to them. It takes her a long time to recover each time they do even the smallest change.

I'm not sure if the time change was due to this or just simply the morning schedule opening up.

Please keep praying! I'll post more information as I get it!

Calling all Prayer Warriors!

2009-12-10T19:35:00.000-08:00

The doctors met with Kevin and Teresa and expressed that they had all been collaborating on Averi's case and had decided that the best course of action would be to do the repair surgery tomorrow. She will still be on iNO, which isn't their preference, because that is typically their backup plan for a baby that desats after surgery. They told Kevin and Teresa that they'd have the ECMO ready and waiting, and if during the surgery she starts to desat, they will immediately put her on ECMO and then finish the repair. The hope is that she will start to do better once her stomach and intestines are put back where they should be. The other issue is that she is up to a rather high number of breaths per minute on the ventilator, which can cause permanent damage to her "good" lung. They are actually afraid that that could've already occurred.

Since Averi doesn't like change, rather than taking her to the operating room, they will be transforming her room into an operating room. They will be doing the long incision, as they're fairly certain that the hernia is large and that they'll need a Gore-tex patch. The surgeon is optimistic that she'll come out of surgery without ECMO. If the ECMO is needed afterward, it can still be employed.

The surgery is scheduled for 1pm PST. Please be praying for the surgeons & team, for Averi, and for Kevin & Teresa. Just a reminder that she is expected to get sicker for the first 24-48 hours after surgery. So you can also be praying that the recovery period will be smooth and without major complications. If anyone would like to be at the hospital to support the Gaynors and pray with them during the surgery, they are more than open to that. They will be hanging out in the NICU waiting room! If you need more information on that, click "comments" below and I'll get back to you.

A major praise is that they were able to get into the Ronald McDonald House for the weekend. This will enable them to be minutes away from the hospital during Averi's critical post-surgical period!

Teresa also had her post partem check-up today, and they were concerned with her blood pressure. For some reason, they didn't seem to think that it was reasonable for her blood pressure to be up with everything going on! She goes back next week.

If you want more info on ECMO or the surgery, click on the little tags below this post. Only posts with those tags show up, and you can scroll down until you get to the "info" --"big long" :) posts.

Awake!

2009-12-10T13:21:00.001-08:00

Ten days old... this is the most awake she's been!

Meeting with surgeons...

2009-12-10T10:03:00.000-08:00

Kevin and Teresa are rushing to UC Davis to meet with the surgeons at 12:30 PST. I do not yet know what the planned discussion is... ECMO or repair. I'm guessing that ECMO is a strong possibility at this point. Pray for Kevin and Teresa to have strength and clarity of mind as they hear what the surgeons have to say. Lord, protect their little girl!

blood gas results...

2009-12-10T03:04:00.000-08:00

Averi is still on max support, 100% oxygen and 20 iNO. They got the blood gas results, and her oxygen is not as high as they had hoped with her being on 100% oxygen. The rest of the results looked good, so it is a wait and see game as they are not making any changes to her vents or support. The attending physician is concerned because she doesn't seem to be making progress. It is in God's hands....please keep praying!

An addendum to the last update...

2009-12-09T22:17:00.000-08:00

Just got a text. Teresa & Kevin left the hospital a bit ago feeling uneasy. As I said, she is stable, but on maximum support. Nurses were supposed to do a blood gas at 10:00, and they were going to call to get the results. Preliminary results of the septic workup show no infection or bacteria, and they're waiting on two other tests. I'm sure Teresa will have more once they get home.

Personal visit...

2009-12-09T21:06:00.000-08:00

My parents just left the hospital where they spent some time visiting with Teresa and Kevin and ogling over the cutest little baby! My mom said that Averi was awake, looking at them, moving around, and trying to pull out some of the tubes. That's the feisty little fighter that we want to see! Mom also said Averi's color looks really good, so that personal tanning salon must have done its job!

While they were there, the nurses were doing some procedures to determine whether she has some levels of sepsis. Evidently Averi has a low grade fever, and they are trying to get to the root of it. She is also still on maximum settings, but my mom got the idea that the nurse on duty felt like she was doing fine. Definitely stable!

Kevin took some video of the little princess, and will hopefully be sending it to me or posting it soon! :)

Back to Maximum Support...

2009-12-09T14:56:00.000-08:00

Averi had a rough night. They tried to wean her on the iNO but it backfired, so she's back on the highest settings on everything. They don't know what the plan is at this point, (they haven't met with the doctors yet) but have asked for fervent prayers. I'll keep you updated as I get further information.

More talk of ECMO

2009-12-09T09:40:00.000-08:00

Yesterday was a long day at the hospital. At 2:00 AM, Teresa reported that Averi had been weaned on her oxygen from 80 to 67 during the course of the day. They ended up turning it back up to 70 because her blood gases showed that her oxygen level was a little low. The doctors are having a meeting about Averi today and there is talk of ECMO again. During these meetings they usually have every available doctor, and sometimes the respiratory therapists, as well as every bit of information in the baby's file. They lay out the info and systematically go through it, and then they discuss the next course of action. It is a good way to get the whole picture laid out there and get a good comprehensive view of what's going on. Averi gets the benefit of the collaboration of doctors who collectively likely have centuries of experience. Teresa is nervous about the prospect of ECMO and what they will recommend. For now, Averi remains stable.

Please pray that the doctors would be given and extra portion of wisdom and that whatever decisions they make will be soundly made, knowing every aspect of what is going on with Averi. Pray also for Teresa and Kevin to feel the peace that passes all understanding. Thank you, friends!

Little princess...

2009-12-09T09:25:00.000-08:00

Here's the little sweetie:

Here she is getting the heart ultrasound (echo). The little thing on her head is like a bandaid. She was on the one side so long that there was some skin breakdown.

Weaning, weaning, weaning......

2009-12-08T10:23:00.000-08:00

Averi continues to be stable. The doctors have increased the ventilator to provide 60 breaths per minute. It was previously at 45bpm. The increase was done to help vent the excess carbon dioxide out of her blood. So far, this seems to be working! They are now weaning the oxygen again. Averi is currently on 80% O2 & they want her down to 50%. Once they get to 50%, they can start weaning the iNO from 20 to 0 for surgery purposes. The iNO is administered through the ventilator, and helps to reduce pulmonary hypertension. It relaxes the blood vessels in the lung. This allows the blood to ﬂow through the lungs more easily.

For those who want to read more about CDH, I found this site which is pretty succinct. Some of the stats are not very accurate, but the descriptions, diagrams and pictures might be helpful. A wealth of information can also be found at the CHERUBS website.

Monday evening update...

2009-12-07T20:54:00.000-08:00

Monday evening update: Averi remains stable but is still requiring the maximum amount of inhaled Nitric Oxide (iNO). Carbon dioxide is still high, so the ventilator is constantly being adjusted. Currently, they are still hoping to schedule surgery for Thursday or Friday. Teresa and Kevin are headed home to be with their other kids right now. Please pray for Averi to have a boring night and for Mommy and Daddy to get some rest. They're exhausted!

#2 Update

2009-12-07T11:47:00.000-08:00

Averi had her second blood transfusion last night before she crashed. Her last blood gas was not where they wanted it to be, so they are thinking about putting an arterial line in her right arm. I clarified with her that Averi is no longer on the high frequency ventilator, but has been switched back to the conventional monitor.

What is an arterial line? Why the right arm?

Pulmonary hypertension that is present in CDH babies causes deoxygenated blood to be shunted away from the lungs and into the aorta and circulate into body. The shunting happens from right to left. Because of this, they use the radial artery (if you hold your right arm so that your palm is parallel to the ceiling, the artery will be on the outside--along the radius bone, where it gets its name--of your forearm. ) on the right arm to obtain blood gas samples from preductal blood. This in conjunction with a postductal pulse oximeter usually provides fairly accurate results. Warning: I'm about to get all nerdy on you! The pulse-ox monitor is a device that has a pair of small LEDs (one red, one infrared) lined up with a photodiode through a translucent part of the body. In a newborn, they usually use the hand or foot. Each light has its own wavelength. Absorption at these wavelengths differs between oxygenated hemoglobin and deoxygenated hemoglobin. The ratio of the absorption of these lights is directly related to the oxy/deoxyhemoglobin ratio. They then get an idea of the oxygen level. You might have had a doctor get a pulse ox from you before. In older children and adults, it is a plastic thing that they pinch and put on your finger.

Anyway, all that to say that they try to use multiple tools to give them information so that they can ensure that their numbers are accurate. An arterial line essentially is the same thing as an IV, but instead of a vein, they use an artery.

Teresa is exhausted and worried about Averi and feels like they've taken a huge step back. However, the doctors are satisfied with where she is right now. With CDH, it is literally one hour... and sometimes one minute... at a time. Please keep praying!

This morning...

2009-12-07T09:22:00.000-08:00

Kevin and Teresa have been at the hospital all night and are, as you can imagine, exhausted. Teresa mentioned that she is afraid to leave. I have been there! They do have some places they can go to rest that are fairly local, but I totally understand the need to stay. Please pray that Averi gives them a good "super stable" window (preferably one that lasts for a long, long, long time!) in which they can go and get some rest and refreshment.

On a completely different note... This is something that comes from ME, not the Gaynors, but there is a local church that is working to take care of the entire family for Christmas. As you can imagine, with being at the hospital for so many long hours, the holidays are likely the last thing on their minds. In the effort to keep some normalcy in the kids' lives, this group of people is seeking to take care of Christmas for them. If anyone would like to contribute toward Christmas for the Gaynors, please contact Kristin White. They would like to have everything in place by December 19th. Kristin has some ideas of what would be good for each family member, but gift cards they can use for gas, food, etc. would be good choices, too. They live quite a distance from the hospital, so those expenses are adding up. When we were going through this, our church adopted us, too, and I can't tell you how much that meant to me!

Thank you for your continued prayers and concern for this family!.

Update...

2009-12-06T23:26:00.000-08:00

Averi is stable for now. They had to bag her, push fluids, and change her ventilator. They think she crashed because she was dehydrated. They had given her a normal dose of lasix. That likely dehydrated her. Next time they will give a half dose.

Lasix is a very strong diuretic drug that is used as to treat fluid retention (edema). This medication is also used to treat high blood pressure. All CDH babies have some degree of pulmonary hypertension, so it is possible that (Tricia talking, not anything from Teresa!) the Lasix caused her blood pressure to plummet. Some babies are just really sensitive to this drug, and adjustments must be made because it works too well.

Thank you for praying. Thank the Lord she is stable now. I keep thinking about how terrifying that must've been for Teresa and Kevin. Please keep lifting Averi up!

Please pray NOW...

2009-12-06T21:14:00.001-08:00

Teresa just posted a message on Facebook saying that Averi Hope has crashed. I don't know anything more than that... She tried calling, and my cell phone dropped out and I got her voice mail after that.

Update...

2009-12-06T08:19:00.000-08:00

Averi is still under the phototherapy lights. She has developed a rash and a fever. They think both are caused by the lights. Please pray that his is the case, and that it isn't some sort of infection and/or allergic reaction. They are now taking her gases every 6-8 hours so that she can regenerate her own blood. It seems to be working. They are also trying to wean her from the nitric oxide and have reduced her O2 from 90 to 85. This didn't go well, it is now back up to 87. She started at 95. Just for point of reference, room air--the air that you and I breathe--is around 21% oxygen.

They are now waiting for the next round of tests.

Continue to pray for Kevin, Teresa, and family. CDH really is a roller coaster ride. It probably sounds cliché by now, but it really is an apt descriptor. There is no predictable pattern as to what is around the next bend.

Little update...

2009-12-05T14:29:00.000-08:00

Teresa posted about an hour ago saying that they were trying to get to the hospital. They called earlier to check on Averi, and her blood gases weren't where they wanted them to be. They have adjusted the settings on the ventilator and the nitric oxide levels. Please keep praying that she will respond the way the doctors want to so that they can move forward and plan surgery.

Tanning beauty

2009-12-05T07:47:00.001-08:00

For those who wonder what that thing could possibly be doing for her, it is a phototherapy system, otherwise known as a "bililight." Averi has too much bilirubin in her system, common for 2-8 day olds, and this blue light helps convert the bilirubin into something she can excrete. (poop or pee) Another treatment for jaundice is sunlight exposure, but that obviously isn't an option! She is wearing the eye shields to protect her retinas.

Still stable!

2009-12-04T20:29:00.000-08:00

Today was a good day! Averi's blood gases continue to be good, and at this point, they are no longer talking about putting her on ECMO. This is fantastic news! Her bilirubin level went up instead of down, so she is still under her very special tanning bed.

The doctors have begun talking about scheduling surgery for sometime next week. I thought I'd talk a little bit about what this surgery entails. There are a couple of different ways they can do this surgery, depending on the size of the defect:

1) Primary repair: If the hole in the diaphragm is small enough, it can be repaired by either simply stitching it together or by cutting some of the baby's inner abdominal muscle, flipping it over, and using it to sort of patch the hole. It is called a primary repair because the surgeon is using the baby's own tissue to repair the hernia.

2) Patch repair: If the hole is too large for a primary repair, a synthetic material such as Gore-tex will be used to patch it. In some cases, pig skin will be used, but that seems to be pretty rare.

The advantage to a primary repair is that it is using the baby's own tissue, which obviously will grow and stretch with the baby. Synthetic patches, while a good and acceptable option, do not grow with the baby, and many times need to be replaced as the child grows. The decision on what type of repair to do is usually done in the operating room, once the surgeon has a good visual on how big the hole is.

Sometimes this repair is done laparoscopically (where they do a few small incisions and are guided by camera), and sometimes by making a midline incision and completely opening the baby up. This decision is based on where the hernia is, how big it is, and the surgeon's preference based on the baby's condition.

The other thing to note is that the surgeon will not take the time to perfectly lay out every bit of intestine. The idea is to get in, get everything out of the thoracic cavity, and close up as soon as possible. A CDH child's anatomy will never be exactly like the typical model. The stomach is usually rotated a bit, and the intestines just sort of "fall where they may." This can create reflux issues for the baby as well as complications, and possibly the need for future surgeries later on.

I say all this in order to give you very specific things to start praying about!

Timing... pray that the doctors are fully aware of everything going on in Averi's body, and that they make a decision on the "when" based on all of the information available. Pray that this will be the optimal time.
Surgery... best case scenario is a primary repair. Pray that the surgeons will have wisdom as they are making decisions about the repair. Pray for those little intestines to fall in a good location... that the stomach will be positioned well.
Healing... pray that Averi's body will heal quickly, that there will be no infection, and that her smaller lung will begin to expand rapidly!
Feeding... though a few weeks off, be praying for Averi's digestive system. Pray that she won't have issues with reflux. Pray that she will eventually be receptive to breastfeeding and not have any oral aversions.

That's probably a lot of information to digest for one post, so I'll just leave it at that! Praise God for giving Averi a couple of really good days! This is a great sign!

Message from Kevin...

2009-12-03T13:04:00.000-08:00

In response to people asking how Teresa was...

I am sorry about not updating u guys on Teresa's condition. To be honest she is truely taking this in stride, being in postpartum and hearing other babies cry was really hard for her, the nurses took extra special care for her and gave her a private room so that she would not have to see a mother and baby. They also set-up her breast pump and got her whatever she wanted. I guess if Averi is princess then she is the queen. Most of the time we are just trying to process the latest news and blood gas results. I keep searching for things to eat (it's how I cope!!!) and she keeps checking on the other kids. Other than that I read to her all your prayers and comments and that really lifts her spirits so please keep them coming. All the support from u guys has made this incredibly difficult situation tolerable, and I don't know how to say how much I appreciate what you guys are doing for my wife and family. Just know that I am truly blessed to have not just witnessed but to testify how profound your prayers and support has been. So THANK YOU from the bottom of my heart!!!

First blood transfusion...

2009-12-03T10:56:00.000-08:00

Averi had to get a blood transfusion last night due to the low levels of hemoglobin in her blood. As a result of all of the testing they do, they take blood out more quickly than she can replace it With all the meds that they have been giving her, Averi's blood started to become a little acidic--not to the point of concern--but it was definitely being watched. The transfusion has corrected this for now. They also put a PICC line in her leg to allow better administration of meds. (Similar to an IV, but it is more long-lasting and versatile.)

For now she is stable! Thank you for your continued prayers.

Superstar!

2009-12-03T08:14:00.000-08:00

I kept telling these people that she is a super-star so they finally listened and put her in lights.....this is not what i meant but it is a start.... Check out her new shades.... Fashion week here we come!!!! ~Teresa

For those who don't know, those are special lights that help reduce jaundice, something that is really common even with healthy newborns! Averi's blood gases have been better since the transfusion. She is stable. She will be under "the lights" til tomorrow when they check her bilirubin levels again. Her sats & stats are where they want them to be. Kevin and Teresa appreciate your prayers. Keep them coming!

Figured I'd introduce myself... and a wee update

2009-12-02T21:41:00.000-08:00

I'm Tricia, and I've been getting Teresa's blog up to date with her Facebook posts. Any post you see that has my name at the bottom is me (duh) and when Teresa gets on, it'll have her name there... That way you know who is posting! Teresa and I went to the same church when she was in junior high and I was in high school. Coincidentally, I also have a CDH baby who was born almost exactly two years ago. It is such a blessing to be able to walk alongside the Gaynors and offer support when it is needed. People were such a blessing in our lives when we walked this difficult road, and it is great to be able to use that experience to help someone else! If you are interested in reading about our daughter Cadenne's journey, click here. She was in the hospital for 12 weeks and has had a total of ten surgeries. This CDH road is a roller coaster for sure, and completely unpredictable. Thank you for supporting the Gaynors through all these ups and downs!

I just spoke with Teresa a little while ago, and Averi's sats were good. They still want the oxygen to come up, but she is stable. They are hoping to speak with the doctor for an extended meeting tomorrow. Pray that they get good rest tonight and that Averi has a quiet, restful night as well.

Results of ultrasounds...

2009-12-02T15:12:00.000-08:00

The chest ultrasound showed pressure in her heart and lungs, which is to be expected due to the fact that there are organs in her chest that shouldn't be there. They were not, however, able to tell exactly how much is in her thoracic cavity. For sure her stomach and intestines, but it is unclear as to whether there is more. Her heart ultrasound was good. Her head ultrasound showed a suspicion of PVL. At this time, Teresa has not had a chance to talk to the doctor to find out what that is.

Talk of ECMO

2009-12-02T13:30:00.000-08:00

One of the treatments for a CDH baby who has a high degree of pulmonary hypertension is ECMO.

ECMO stands for ECMO stands for Extra Corporal Membrane Oxygenation. In a nutshell, they cut the carotid artery in the neck and insert cannulas. Blood is removed, cleaned, oxygenated, warmed, and put back into the body. This is done so that the heart and lungs can rest while the machine does all the "breathing." (basically heart/lung bypass.)

There are many risks involved, but the main one is that they have to use heparin in the circuit to prevent the blood from clotting. Special care has to be taken to make sure that no bleeding occurs, and they do ultrasounds of the head every other day or so to make sure there are no brain bleeds. It can also cause damage to the kidneys. However, as risky as it is, it truly is a life-saving treatment. Those of us who have had kids on ECMO often say that it is a love/hate thing. It truly is.

For those who are interested in what this thing looks like, here are some pictures of our daughter on ECMO. You'll have to click on the pics to really see them, as they are way busy... You can see the tubes of blood circuiting around her, and all of that machinery in that picture is JUST for her.

Today ECMO was mentioned with regard to Averi, and Kevin and Teresa signed the consent form just in case it is needed. In short, specific prayer requests would be that 1) she won't have to go on ECMO, and that 2) if she does, there would be no bleeding, that the kidneys would maintain their functioning, and that the ECMO would truly be something that would give Averi rest. Additionally, if Averi goes on ECMO, she will have two nurses exclusively for her. One to sit by the ECMO machine 24/7 and the other who is responsible for her cares.

Presently, they are having to give Averi more drugs and are constantly tweaking the settings on her machines. They had been giving her morphine to keep her calm, but have now switched to a paralyzing agent to make that happen. They are now having to whisper around her and have to keep touching to a minimum. Her blood pressure is being affected just by talking normally around her. She is such a princess already! They kicked out one of her roommates because he was too fussy. On a positive note, her blood gases were a little better after the paralyzing agent was given. Your prayers and encouraging comments are much appreciated!

Showing her peepers!

2009-12-01T21:12:00.000-08:00

Tests, tests, and more tests...

2009-12-01T19:45:00.000-08:00

Ok lots of tests were done today, including head, chest, & heart ultrasounds. They don't have the results yet. Kevin and Teresa also haven't had a chance to talk to the doctors yet. Averi's nurse has been awesome and informative. For now, it seems that everyone is happy with how she is doing on nitric oxide and the high frequency ventilator...she is stable. They thank all of you for your continued prayers.

First Setback...

2009-12-01T15:05:00.000-08:00

Averi had the first of hopefully few setbacks that she will have to endure on this CDH rolllercoaster. The honeymoon period is over... the first 24 hours after birth, a lot of times things seem a lot better than they really are, and then reality sets in. Up until now, Averi has pretty much been sustaining herself, but it has taken a toll.

Several times a day, they do a blood gas. (Click on link for a description.) Basically, they take a small amount of blood and test to see how Averi's lungs are functioning. At this point, The oxygen level (O2) looks good, but there is too much carbon dioxide. (CO2) As a result, they switched her from the conventional ventilator to the high fequency ventilator. After that, they noticed that her blood pressure was low and after fixing that, the next blood gas was not satisfactory. She is now on NO2, which honestly I don't know anything about! I do know that the high frequency ventilator is sort of unnerving to watch. It administers up to several hundred breaths a minute, and shakes the bed.

The other issue is that even though she is sedated, she is still very active. This is bad just because she needs to conserve her energy for recovering from surgery, etc. They like to keep CDH babies as calm as possible, and not let them expend too much energy. Other than that, everything looks as they should for now. The combo of machines and drugs seem to be working and her last blood gas was right where it needed to be. They are waiting for the ultrasound of her chest to see what organs are actually in her chest cavity.

Averi Hope Gaynor

2009-11-30T20:01:00.000-08:00

As of 7:52 pm, Averi Hope Gaynor is officially here! 6 lbs 14 oz and 19 inches. So far she is breathing on her own... and nice and pink! Teresa did great. And Kevin is a proud new papa. Here's the little sweetie!

Averi's birth

2009-11-30T19:31:00.000-08:00

We found out late in the morning that Teresa was at the hospital, dilated to 8cm. Teresa had her epidural, and it was pretty much a waiting game from there! Three hours later she was dilated to 9cm and had a bulging bag of waters. Averi was at -2 station, which means that her head wasn't engaged. This is likely due to polyhydramnios (excessive amount of amniotic fluid) which is common with a CDH baby. Healthy babies do "practice breathing" in the womb, where they "inhale" amniotic fluid. CDH babies have less lung capacity, and often don't do the practice breathing as much. Consequently, fluid builds up and can cause enough fluid that the baby doesn't descend.

Two hours later, Avery still had not decended, and Teresa was still at 9 cm. The doctors decided to poke a small hole in her bag of waters so that it could slowly leak out. This is largely to prevent the umbilical cord from prolapsing, (cord coming out before baby, which sometimes cuts off the oxygen supply.)

After the waters were broken and leaking, Averi still was not descending, so at 6:00, the doctor had Teresa sit up a bit so that gravity could help her come down. By 7:30pm she was pushing!

Our last Ultrasound!

2009-11-23T07:56:00.000-08:00

Averi is breech! I guess this is not uncommon especially when there is extra amoniotic fluid present. The doctor was super positive that Averi would turn and if she didn't that her position makes her a good candidate for averision(bare with me if I got the name of the procedure incorrect) which is a manual turning of Averi. They will do a quick scan prior to induction on Dec. 14th. If we are not successful then we will have to have a C-section. So we are praying she will turn.

I am NOT diabetic. Yay! Praise God! One less thing to worry about as we get closer to Averi's birth. I am 1 cm dialated. The doctor said I am 60% soft, not sure what that meant. We are 36 weeks and 4 days. Averi weighs 6 lbs 14 oz by ultrasound measurement, which can be off more than they would like. If that is correct though that means Averi gained 2 lbs 2 oz in the last 4 weeks. She has chubby little cheeks. I am going to try and get the 4D u/s picture we got posted. She is going to look like her brother Ian.

As we approach the induction date I am getting more and more anxious. The unknown is driving me crazy. It is a struggle at times to stay positive. There is just no way to know what will happen with Averi. I long to bring her home, but constantly have to bring myself back to the reality that it just may not happen. So many CDH babies have passed, and my heart just breaks for the families. I am extremely uncomfortable with this pregnancy but don't want her to come out yet because right now she is safe and warm and doesn't need outside support. Praying and worshiping the Lord really does help for me. Averi has already taught me so much, the impact she has had on our family and friends is huge! Ok the diary part of this entry is over.... he he he!

Thanks you for your continued prayers!

3 hour test

2009-11-11T00:08:00.000-08:00

The 3 hour Glucose test was brutal!!!! They poked my 5 times!!!! That wasn't the hard part it was sitting in the waiting room for 3 hours trying not to fall asleep. I should get the results back on Monday.

I am still having contractions off and on and losing parts of the nasty plug. My doctor said I have to rest!!!! Easier said than done, but I am forcing myself to sit and rest or lay down if I feel them. It is not time for Averi to come so I know how important it is. We only have 3 more doctor's appointments before we get induced. I am more and more nervous and anxious as we get closer and struggle at times to stay positive, especially when I hear about more CDH babies recently passing. It's so sad and hard to hear because there really is just no way to know what will happen with Averi, or any other CDH baby. All we can do is leave it in God's hands and trust that he knows what's best and that there is a plan. I know this in my heart and soul, but sometimes my brain takes over. I just pray more everyday. We are blessed, and I have so very much to be thankful for.

Thank you for your continued prayers.

I lost my plug!

2009-11-10T00:02:00.000-08:00

Ok, so last night I lost my plug! Ok so with both Kylie and Ian the plug came out a little bit at a time in the toilet, and I went into labor shortly after. OMG, this thing was huge and intact. I cannot say ewwww enough. I did have some contractions over the weekend, I guess thats why it came out. Ok so after freaking out all night last night, I called the doctor and they said they want me to keep close track of the contactions and that losing the plug wasn't necessarily a sign I was going to go into labor. Freak out ended.

I am going to do the 3 hour Glucose test tomorrow, and I am not looking forward to it at all.

Ok, not much else to say.

Thank you for your continued prayers!

OB check

2009-11-09T23:56:00.000-08:00

Ok, so we had the OB check. My test results from the 1 hour Glucose test. So I have to take the 3 hour test. Ugg! Averi's heartbeat sounds great.

I am finding that as we get closer to delivery I am getting more anxious. I am praying more and more as the days get closer. We are 35 weeks. She moves constantly and sometimes it hurts when she does.

Not much else to report. Thanks so much for your prayers.

Cardiologist Appointment and stuff

2009-11-06T13:06:00.000-08:00

We met Dr. Van Gundy! He is an awesome doctor. I guess when you are a pediatric specialist you have to have a certain type of personality. At least that is the case with this doctor. He was very personable, told us a little about his life and kids. I think it helps that he had good news for us. He got a very clear view of the artery that my doctors are concerned about and said he did not see an abnormality. He said it looked good was functioning good and that he would do another check after Averi was born.

So we have an OB check on Monday 11/9/09. We are 34 weeks pregnant. My belly is HUGE! Everyone keeps saying "wait when are you due tomorrow?". As time gets closer I get more and more anxious and nervous. The unknown is very hard to deal with. We just have no way of knowing if and when we will be able to bring Averi home. So many CDH babies have passed over the last couple of months. It is nerve racking. On top of that we are dealing with trying to place my grandma in an assisted living home when she gets out of the care and rehabilatation center. We found the place which was totally God. So it is all falling into place, it just has made things really hectic around here! My house isn't as clean as I would like it to be, but it will wait for me to do it. When I try to do it all (run errands, cook, clean, go see grandma, run the kids around) I start getting contractions, so I have had to make myself stop and rest. It is really hard to sit when there is so much to do, but it is not time for Averi to come yet so I have to do it!

Your continued prayers are so very appreciated! I am so blessed to have so many loving people in my life...... Thank you Jesus!

The emotional roller coaster continues....

2009-10-27T02:37:00.000-07:00

Today's appointment was NOT good. First, the doctors are concerned about Averi's heart. The output artery looks narrow. We are being referred to a Pediatric Cardiologist, and will be adding him to our team of doctors for Averi. Dr. McLean did say that it could be the way the ultrasound is viewing the artery because her heart is pushed all the way to the right side. So we wait to see what the cardiologist says.

Second, my blood sugars were high at this visit. So, I am retaking the glucose test. I forgot to get that lab slip before we left so I will have to remember to call in the morning.

Third, the amniotic fluid has increased in volume. My blood sugar could be causing this, however it is common with CDH babies since they may not be able to process the fluid normally with their organs all scrambled in the chest cavity.

I need to read more about all of this, but I think I will wait for the glucose test results and the cardiologist to give us some definate answers. I have learned that reading this without knowing more specifically what is going on with us is depressing since there is so much information.

I am stressed out, frustrated, overwhelmed, sad, and feel like I need a time out. My grandma is in the hospital, Ian is sick again, grades just arrived for Alex (not the best), all seemed to pile up on me emotionally today. I feel like a failure because I can't seem to keep it together.

I would like to end on a positive note. Averi weighs 4 lbs. 12 oz. and her heart is functioning normally, and her heartbeat is strong. I am 32 weeks and 4 days and all of Averi's measurements are right on track or measure a little further along. The doctors at Sac MFM are awesome and Dr. McLean was so gracious today.

I do have some prayer requests.

That God will continue to teach me through this, and give me peace and strength.

That the doctors will figure out exactly what is going on with my blood sugars, and the amniotic fluid so we know what to expect, look for, and plan as we are in the home stretch.

That Averi's heart will continue to function normally and provide her body with the support it needs to sustain her. That the pediatric cardiologist will confirm or rule out an abnormality in Averi's artery so we can plan accordingly.

Thank you all for your continued prayers and support.

Ob/Gyn check and NICU tour

2009-10-05T19:31:00.000-07:00

Ok so OB/GYN check went well. The doctor was so kind and answered ALL of my questions (I had a new list for this appointment). I love him he is great! Averi's heartbeat was strong, we will have an ultrasound on our next visit in 2 weeks, didn't get one today. I gained 2 pounds again, ugh. I am trying really hard not to gain any weight. My blood pressure was good, and Glucose test came back normal. The doctor put us on the calendar for induction on December 14th, barring any issues or distress on Averi. Our doctor will be at UC Davis that week, yay! He briefly went over the Ronald McDonald house and Kiwani's house option and also said that there were hotels very close. He said that they will probably do the repair at or around 10 days which puts us right at Christmas Eve. So we may be spending Christmas in the waiting room of the hospital waiting for Averi to get out of surgery. The kids are aware of this and are being very understanding. We are going to go with the flow this year, and play it by ear.

The NICU consult and tour went very well. The Charge Nurse was so informative and answered all of our questions with straight answers. They have a room that they use primarily for CDH babies. There was a CDH baby in that room so we couldn't go in. We just kind of peeked in and got a quick look at the doorway. They have 2 ECMO machines in NICU and 3 in PICU and 2 on standby/backup, but that they machines can be moved between the 2 areas quickliy if need be. They like to try and use High Frequency Ventilators (HFV) and Nitric Oxide before using ECMO. They use earplugs on the baby for both ECMO and HFV. They have an awesome L&D with high tech infant beds with the equipment on them that they will need for Averi in the room. They have a breast pumping room were they supply all you need and you can even wheel the pumps to the rooms. The lobby of the NICU has WiFi so Kevin can work there. They a parent room with lockers and such and a parent sleeping room. Averi will have her own nurse, the ratio is 1:1. We met one of the Neonatalogists and he actually asked me questions. He asked me how I was feeling and how things were going. Then he said he was wishing us the best and he would see us soon. Overall the visit was just amazing and gave me so much more peace.

It looks like the insurance thing has all been worked out. It will cost us a little more but we get to keep the same awesome plan! Thank you Jesus! Ok I will add more if I can think of it. Your continued prayers are so very appreciated!

NICU consult and tour Oct.5

2009-09-29T02:50:00.000-07:00

OK so nothing really new to report but I do want to reach out again and ask if anyone has any question suggestions for our NICU consult and tour on Oct.5th.

I have already received a few really good suggestions and I am so thankful.

I also wanted to reach out to those who have made comments and ask if you have a blog, and wouldn't mind me adding a link to it, could you post a comment with your blog information. I am new to this blog thing and am still getting use to navigating to other blogs. If you are reading this blog and wouldn't mind me adding a link to your blog please post a comment with your blog information as well. I would love to connect with as many people in the CDH community as possible. I would also like to add links to non-CDH blogs as well.

Prayer requests: Kevin's company has decided to change the way they offer health insurance, so pray that the coverage and premiums will cover Averi's needs and not break our bank accounts.

Pray for Averi.

Thank you so much for your prayers, I really appreciate it I cannot say that enough.

Doctors appt today

2009-09-22T19:26:00.000-07:00

Averi is right on target for 27 weeks and 5 days. She weighs 2 lbs 10 oz. Her heart is still all the way to the right but is functioning completely normal and has a good normal heart beat. There are no compression issues at this time. Her stomach is still right beside her heart and they see a bit of intestines or liver, not sure which one, in her chest cavity. So as far as that goes nothing has really changed. Staying the same is ok. Amniotic fluid looks good. Her kidneys and bladder look good. Her brain and head development are good. She is very active and was moving around alot but they got all the pictures they needed and wanted. We got a 3d/4d pic of her sweet little face and we just feel in love.

My blood pressure was good. I only gained 2 pounds and didn't gain any weight the last 2 months so doing ok there. Honestly, I thought I would have gained more weight but this is good.

The doctors and nurse were extremely informative and personable. They answered all the questions on my list that they could and are setting us up for a tour of the NICU where we can ask the questions that are about the actual hospital and their policies etc.. I am super confident about our decision and feel so fortunate to have had a choice between 2 hospitals. Well, according to our doctor we also could go to Stanford, so really 3 hospitals.

We see the "team" every 2 weeks now to monitor the pregnancy and Averi. My sister Traci has been so kind and generous to help us out with the kids and I praise God for her.

Thank you to all for your continued prayers and support. Thank you to those with question suggestions, they really really helped!!

Questions to ask the Specialist Team tomorrow!!!

2009-09-21T09:23:00.000-07:00

Ok, tomorrow we are going to Sacramento Maternal Fetal Medicine and offically transferring care to them with delivery at UCDavis.

Does anyone have any suggestions on what to ask the doctors?????????

I am very nervous and know that things are gong to start moving along very quickly as I am wrapping up the 2nd trimester and moving into the 3rd trimester this week!!!!!!

Continue praying, keeping alert, and always thanking God. Colossians 4:2

Thank you all for your love, support, and continued prayers. I thank God for everyone He has brought into our lives everyday.

Transfer of care

2009-09-14T15:13:00.000-07:00

I am 26 weeks pregnant!!! I can't believe how the last 6 weeks have gone by so fast. We have an appointment with Sacramento Maternal fetal Medicine to transfer care.

If anyone has any suggestions on what to ask the specialists, and then for the NICU when we take the tour, please feel free to put them in the comment section.

Your continued prayers are so appreciated.

Prayer requests:

That the specialists will care for myself and Averi adequately.

That Averi's lungs would grow and that her heart will continue to grow with no compression hindering it to do so.

For God to continue to give me peace and continue to teach me to leave Averi in His hands (I am still learning). I tend to worry alot and I am trying to put it all in God's hands.

MRI Results

2009-09-04T20:18:00.000-07:00

We got the MRI results. I am SO VERY HAPPY to report that Averi's brain is completely normal and is WITHOUT abnormalities or anomolies. Can I repeat myself, Averi's brain is perfect NO brain damage!!!!!!

This is after being told that she had brain damage and it is always way worse than expected when the baby is born. That we should just terminate because her brain was mush, and it wouldn't be any kind of life for her plus the SUA makes her prognosis terminal, and it would just be easier to terminate. In my heart I knew God had another plan.

Either the doctor's opinion and the ultrsound were wrong, OR GOD HEALED her brain.

Even after the doctor told me that her brain was completely normal, he suggested that we consider "comfort care" once she was born. That we may not want to choose a course that may not change the outcome. I didn't understand what that meant so when the doctor explained I was a little irritated. I knew he was basing his opinion of prognosis on just the 15 babies born with SUA and CDH born at UCSF, and not babies with CDH and SUA born nationally like they usually base prognosis on. So I asked " Those 15 babies did they have other issues seen before birth." He said "yes for the most part". I said "Ok then so far Averi is not like those babies." I told him that we were Christians and we believed God had a plan for our baby. That I was going to give our baby a fighting chance, and if she came home with us, or went home with Jesus, we still needed to give her a fighting chance. He then said "That is an ok way to look it at, but then UCDavis may want you to transfer care here."

The question I continue to ask myself is: Why would I want to deliver where they don't seem to want to fight with me for the life of my baby? And they continue to answer with interaction like the above. On three occassions they seemed to be really irritated at the fact that I want to have my care and baby at UCDavis. Maybe the economy?

I have prayed so many times for God to give me discernment and peace regarding the decisions we make for Averi and her care. I have always, and continue to, feel peace with the decision that UCDavis was going to be where I deliver. They have assured me that they have the expertise and equipment (ECMO) they need to care for Averi. I am going to ask all the questions I need to and make sure that this is the case at our next appointment when the transfer of care is complete.

If anyone has any suggestions about what to ask please please please feel free to post them in the comments section. Any comments are welcomed and we thank you for taking the time.

For all who have offered encouragement, support in friendship, and prayers we cannot express how deep our appreciation goes.

I thank God for all of those he has brought into our lives. God is so good!!!!

UCSF MRI

2009-09-02T19:56:00.000-07:00

WOW..... this appointment took forever. The appointment was at 6pm. We left at 3pm to make sure we got there on time. We actually got there just before 5pm. So thery took me back early. They started the MRI at 5:30pm. Honestly, I freaked out a little when they put me in the tube. I am a little claustrophobic, and boy when they put me in the tube I thought I was alot claustrophobic. Deep breathing helped, then I calmed down.

It was only supposed to be at the most a 90 minute appointment. Averi was moving around so much that it took until 8:20pm, and she didn't get all of the pictures she needed but most of them. I got one 5 minute break. It was almost 3 hours of laying in that tube, but it was for Averi, so I HAD to do it.

We should have results within the next day or so. Until then, we are so thankful your continued prayers and support.

Regional Center hearing for Ian

2009-09-01T19:17:00.000-07:00

Today I had an inforaml hearing to try and reinstate services for Ian. Ian has developmental delays and has been receiving services from our area Regional Center since he was 2.

He has been in the special education program through the school district since he was 3. He is now in a special day Kindergarten and struggling. Academically he always scores high or right on target, but in every other category (going by assessments done in the past and recently) he is at least 1 year behind and 2 1/2 years behind in other areas.

I wanted to get this all tied up before Averi was born, but now I am not so sure we will get our next hearing before then. Today's meeting was a HUGE waste of time. She basically told me that they were going to deny services and send me a letter confirming that. It may ALL be a waste of time since I received a letter a few days later stating that services we going to be discontinued due to budget cuts if they had not been already.

Luckily, Ian's teacher is awesome and she is doing what she can on her side. I am just praying that this all works out and we get things on track before Averi is born.

For now we are waiting for a state level hearing. Tomorrow we have the MRI, so nervous about that as well. These days I have to pray to keep myself from worrying too much, I worry ALOT so I am getting alot of prayer in.

The name of the LORD is a strong tower; the righteous run to it and are safe.
Proverbs 18:10 NKJV

Last routine OB appointment

2009-08-31T03:07:00.000-07:00

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.