The Notti Family Blog

Fun in the snow!

2009-11-11T23:05:00.000-08:00

Sorry it's been so long...HAPPY HALLOWEEN!

2009-11-11T17:15:00.001-08:00

In the pool...and out!

2009-07-05T23:01:00.000-07:00

Lily's 1st Birthday!

2009-07-05T22:48:00.000-07:00

Flora written the Australian sand

2009-07-05T22:42:00.000-07:00

Flora...written in the sand.

2009-06-21T21:50:00.000-07:00

This link will direct you to "To Write Their Names In The Sand" and a special tribute to Flora Jane. It's a beautiful way to remember Flora. I had hoped it would be posted by June 17th. William and I have decided to dedicate June 17th to Flora and let Lily enjoy June 18th. We will still always think of Flora on June 18th and everyday, but we want Lily to have a special birthday without sensing our sadness. Thank you all for your kindness and support. We love you.

http://namesinthesand.blogspot.com/search/label/Flora%20Jane

Forget-Me-Nots for Flora

2009-06-17T22:39:00.000-07:00

Today we planted Forget-Me-Nots for Flora. Not a day goes by that we don't think of you Flora, our sweet angel baby. We love you always. You are not forgotten.

Music in the Park!

2009-06-17T22:27:00.000-07:00

Lily and Mommy enjoyed some music in the park this week...the band is called Fiddle De Dee!

Some more pictures of Lily!

2009-05-23T13:23:00.000-07:00

Here a few more pictures of Lily. What a cutie!

The first picture is of Lily and Uncle Robert reading together.

The second picture is of Lily after eating some yummy blue berries.

The third picture is of Lily with Grammy Janice.

Some pictures from our trip to Wisconsin!

2009-05-23T13:15:00.001-07:00

Sorry it's been so long since I've posted pictures. The time seems to be flying by lately. We are all doing well. Lily is pulling herself up on furniture now and still 'army crawling'. It's hard to believe she is almost one already! Hope you enjoy the pictures.

The first one is of Lily and Daddy after Daddy's half marathon in Oshkosh.

The second picture is of Lily with Grandma and Grandpa Huecker.

The third picture is of Lily with her Great-Grandma Lillian. So sweet!

Lily...The Little Mermaid!

2009-05-03T21:48:00.000-07:00

Under the sea
Under the sea
Darling it's better
Down where it's wetter
Take it from me
Up on the shore they work all day
Out in the sun they slave away
While we devotin'
Full time to floatin'
Under the sea

Doin' The Army Crawl!!!

2009-03-28T10:09:00.000-07:00

Lily's 1st Swimming Lesson

2009-03-27T17:18:00.001-07:00

Can you believe Lily is already 9 months old?!

2009-03-25T16:27:00.001-07:00

Lily's First Sled Ride!

2009-02-24T16:52:00.000-08:00

Lily's Baby Sign

2009-02-24T00:18:00.001-08:00

I finally posted some videos on our Lily's Baby Sign blog. They don't look perfect, but I think you can still get the idea. I'll post more soon. Enjoy!

Remembering My Grandpa...

2009-02-14T22:08:00.000-08:00

Today was my Grandpa's birthday. I still think of him often and I wish he were here to share in all of our new adventures. I miss you and love you Grandpa!

HAPPY VALENTINE'S DAY!!!

2009-02-14T18:17:00.000-08:00

Packer Fans on Super Bowl Sunday!

2009-02-14T18:15:00.000-08:00

Hanging out with the Grandpas...

2009-01-25T20:47:00.000-08:00

Yummy!

2009-01-25T20:44:00.000-08:00

Lily eating after eating her first cereal and green beans. Yummy!

Some more cute pics...

2009-01-25T20:38:00.000-08:00

We've got a miniature Badger Fan and Locomotive Engineer!

Christmas 2008

2009-01-25T20:16:00.000-08:00

Sorry it's been so long! Hope you all had a wonderful holiday season. We enjoyed Lily's first Christmas and New Year. Here are the pictures to prove it :-).

Christmas Pics...soooo cute!

2008-12-03T11:11:00.001-08:00

A short video...if I can get it to work.

2008-12-03T10:59:00.000-08:00

Lyndsey & Charlie

2008-12-03T10:56:00.000-08:00

Lily's First Thanksgiving!

2008-12-03T10:51:00.000-08:00

More Pics...

2008-11-12T10:52:00.000-08:00

Tummy Time

2008-11-04T23:05:00.001-08:00

Lily is getting so good at tummy time...who is that baby in the mirror???

Halloween and the NICU Reunion

2008-11-04T22:56:00.000-08:00

Lily was a NICU nurse for the costume party at the NICU reunion and a ballerina for Halloween. So cute!!!

Flora's Service

2008-11-04T22:50:00.000-08:00

Here are a couple of pictures from Flora's service.

Cutie Pie...

2008-10-27T22:56:00.001-07:00

Cute and funny pics...

2008-10-16T10:22:00.000-07:00

Enjoy!

Flora's Obituary

2008-10-16T10:08:00.000-07:00

Flora Jane Notti, infant daughter of William and Alicia Notti, was stillborn June 18, 2008, at Providence Alaska Medical Center. Flora experienced Twin-to-Twin Transfusion Syndrome and Selective Intrauterine Growth Restriction.

A service honoring Flora's memory will be at 3 p.m. Friday at ChangePoint Church.

Flora enjoyed dancing with her twin sister in her mommy's tummy. Flora fought hard during her short life. Because of her strength her twin sister is flourishing today. Flora's cousin wrote: "Flora will never be forgotten. She was Lily's hero and will forever be her guardian angel. She fought long and hard until Lily was big enough to survive. While her life was way too short, her gift goes beyond words."

Flora's life brought a special closeness to her family; she will always be greatly missed. We look forward to being with her again someday.

She is survived by her parents, William and Alicia Notti of Anchorage; her identical twin sister, Lillian Nicole of Anchorage; her grandparents, Emil and Rena Notti of Anchorage, Bob and LeNora Kirkman of Sitka, Linda Newton of Anchorage, Bob and Sandy Huecker of Lomira, Wis., and Janice Havins of Wasilla; her great-grandparents, Lillian Huecker of Fond du Lac, Wis.; Bob and Liz Dietz of Roswell, Ga.; Marjie Bukovich of Juneau; Orlin and Grace Fietz of Waupun, Wis.; and many aunties, uncles, cousins and friends.

Flora was named for and preceded in death by her great-grandmother, Flora Peterson. She was also preceded in death by many other great-grandparents who together with Flora have welcomed her into heaven.

Donations may be made to the Providence Alaska Medical Center NICU.

Her parents wrote, "A special thank you to our family, friends and medical team who have provided us endless support during this difficult time."

Baby Announcement

2008-10-06T18:57:00.000-07:00

More Lily Pictures...

2008-10-06T18:44:00.000-07:00

Hi Everybody! Thought you might enjoy these pictures of Lily. I know we do! She is almost 10 pounds now...what a whopper!

Getting big...

2008-09-14T22:25:00.000-07:00

Home At Last!

2008-09-03T19:55:00.001-07:00

This is a little late, but Lily is home at last! She came home on August 6th after 49 days in the Providence NICU. Today she weighed 7lbs. 12oz....she is getting so big. Please enjoy these pictures that were taken on August 15th.

Lily

2008-08-01T18:32:00.000-07:00

Hi Everybody!

Sorry it's been so long! Just wanted to let you all know that Lily is doing fabulously! She has had a few rough days along the way, but she is on her way to bigger and better things now.

She is 5 lbs 3 ounces!!!! I can hardly believe it. She was 3 lbs 4 ounces when she was born and dropped down to 2 lbs 14 ounces shortly after that.

She is starting to nurse and take a bottle 5 or 6 times a day...as soon as she masters eating on her own she can come home! It's possible she could be home by the middle of next week.

Thank you all for your continued prayers and support. I'll be in better touch when we all come home.

Thank You!

2008-07-12T00:46:00.000-07:00

Hi,

I just wanted to say thank you for all of the thoughts, prayers, messages, comments, cards, flowers, presents and visits over the last several months. At some point I will write individual thank you cards, but I wanted you all to know how much I appreciate all of your support.

Lily, William and I are doing well. Being in the NICU day after day isn't easy, but when I decided to become a mom it wasn't just for the good days...and I know the good days are coming. I could never have imagined the incredible feeling it gives me to be a mom; Lily gives me the strength to keep going. William has been amazing through all of this...as he grieves he is still able to support me. I am so lucky to have him; as my husband and the father of my children.

Right now it hurts so much. I will never stop missing Flora, but I hope that time will ease some of the pain. I will always wonder what could have been. I will always love both of my daughters, Lily and Flora.

Experciencing the greatest joy and sorrow of a life all at once is overwhelming. I could never have imagined the incredible feeling becoming a mother has given me. I love my husband and family with all of my heart, but this is a love that is indescribable. It is an amazing love and I am so blessed to be experiencing it.

Thank you all so much! Please keep praying for Lily. She is a brave and beautiful little girl...she'll steal your heart!

Our journey has begun!

Love,
Alicia

A Message From Lily...

2008-06-27T01:03:00.000-07:00

Hi! My name is Lillian Nicole, but you can call me Lily. I was born June 18, 2008 at 1:09pm. I weighed in at 3lbs 4oz. and was 15 1/3 inches long. I am beautiful!

My twin sister Flora Jane is in heaven. She was stillborn on June 18, 2008 at 1:07pm. She weighed 1lb 3oz. She was beautiful too. My Mommy and Daddy will never forget her.

Please forgive my Mommy for not replying to emails, messages, comments and phone calls. She is spending all of her time in the NICU with me. This is a very difficult time for her and my Daddy. My Mommy tells me that I make her feel so happy...she doesn't have words to describe the way my sister Flora and I have changed her life.

I am doing very well. I am breathing on my own now and I am beginning to gain weight again. In order to go home I need to be eating only from the bottle and breast (no tube feeding) and be able to maintain my body temperature in an open crib. If everything goes well I will be coming home at the beginning of August. My Mommy and Daddy can hardly wait!

Thank you all for praying for me, my sister and my Mommy and Daddy. Please keep praying for me to grow bigger and stronger. I can't wait to meet you all!

Baby Update 6-12-2008

2008-06-12T11:43:00.000-07:00

We still have 2 heartbeats. Thank you God for giving us another week with both of our baby girls!

Our bigger baby continues to do well. Our doctors are hopeful that the surgery to separate our babies shared blood vessels has protected her. We are so happy that she is doing well. Please keep her in your prayers.

Unfortunately we did not get good news regarding our smaller baby this week. She is very sick and our doctors don't expect her to survive. Our doctors don't pretend to know what the future holds for us and our babies and they have encouraged us not to give up hope. And we are not giving up hope. Our hope is for what is best for our littlest baby girl. We are confident that she feels safe and loved and is not feeling any pain where she is right now. We are still praying for a miracle, but we want to protect her from any unnecessary pain. She is so strong and definitely has a fighting spirit. Please continue to pray for our littlest baby.

We had to face some tough questions and answers this week, but hopefully we are now better able to make an educated decision on when it is best to deliver our babies. Time will tell what is in store for us and our babies, but for now we are thankful for everyday we get to spend knowing both of our babies are still with us.

Thank you for your continued thoughts and prayers. We are truly blessed to be surrounded by such wonderful, caring people.

Baby Update 6-5-2008

2008-06-05T17:12:00.000-07:00

We still have 2 strong heart beats. A reason to be thankful. Thank you God!

Our bigger baby is doing well. She weighs around 2.5 pounds now and is developing right on schedule. She is a trooper and just keeps moving ahead. Please keep her in your prayers.

Our smaller baby still has a strong heart beat and shows signs of improved blood flow through her umbilical artery (not exactly sure what that means though). Unfornately she did not grow over the last 3 weeks. We were very upset by this news at our appointment on Tuesday, but after our appointment today we have new found reason for hope. Our doctor said that it is disappointing that she did not grow, but that her lungs and other systems are still developing. Right know she weighs around 15 ounces; approximately the size of a 22 week, 2 day old baby and I am 28 weeks. If she doesn't grow anymore, when she is born she will be the size of a 22 week, 2 day old baby, but she will be stronger because her lungs and other systems will be more advanced. This gives us reason for hope. We are still praying that she will grow, but it is good to know that she still has a fighting chance even if she doesn't. Please keep praying for her to grow and show other signs of improvement.

For now we will continue to evaluate weekly to determine when is the best time to deliver our babies.

Some days it is tough for us to remember the positive aspects of our pregnancy. We really have many things to be thankful for.

We still have 2 strong little girls; one of them is doing very well and the other is so strong and determined to make it.

We have endless family and friends that care so much and have shown us such generosity and compassion.

We have an excellent medical team that cares about us and our babies.

We have taken this opportunity to learn about each other as husband and wife and have grown so much through this experience. We now know without a doubt how much we mean to each other. And we will be more prepared for other obstacles that we may encounter throughout the rest of our lives together as a couple and as parents.

And most of all we still have hope and faith that we will all make it through this.

Please keep praying...we are praying for a miracle.

Thank you all so much. We love you!

Baby Update 5-29-2008

2008-05-29T22:59:00.000-07:00

We still have 2 heartbeats! Thank you again God!

Our bigger baby is still doing well. Please continue to keep her in your prayers; especially for her to not be affected negatively by a premature birth.

Our smaller baby is still maintaining, but the doctor told us that she is sick. He hasn't said that before and even though we knew it, it was still hard to hear. Her amniotic fluid level is very low, which means that her bladder and kidneys are being affected by her condition. The doctors told us that she is in danger of passing away at any time, but thank God their is no guarantee that that will happen. Please pray that God will heal her body...if not in the womb then after she is born. Although she is not healthy we still believe that she is very strong and can get through this challenging time.

Due to the condition of our smaller baby my doctor told me to be prepared to be hospitalized as early as the end of next week. If I am hospitalized the doctors will be able monitor our smaller baby more closely and hopefully know when we need to deliver our babies.

Please pray that I will be able to stay pregnant long enough to make it safe for both of our babies to be delivered safely. My doctor told me that many babies are delivered at 28 weeks and do well. This is good news, but I am still hoping to get further if I can.

Thank you all for your continued prayers and support! Especially thanks to my dad for all of his help and support over the last couple weeks! I love you Dad!

Baby Update 5-22-2008

2008-05-23T09:27:00.000-07:00

We still have 2 heartbeats! Thank you God!

The bigger baby is doing well. All of her doppler (blood flow, etc) studies continue to be normal. Please continue to keep her in your prayers; especially for her to not be affected negatively by a premature birth.

The smaller baby is maintaining. Her doppler studies are still abnormal, but overall our specialist thought that things might look a little better this week. He is concerned about some of the consequences of her lack of blood flow and talked to us about what she might experience after birth. Of course it isn't fun to hear about all of that, but we will just be so happy to have them both and it is important to be informed. Hopefully she won't have any long-term issues to contend with. Please keep praying for her organs to get the proper blood supply and for her to hang in there.

My dad is visiting for two weeks. It is so wonderful having him here. William is getting a chance to relax a little and it is so nice for me to have company.

Thank you all so much for your continued prayers, calls, messages and visits. Your support means so much!

Baby Update 5-15-2008

2008-05-20T23:21:00.000-07:00

We still have both heartbeats...yeah! It was sure nice to get some good news at our appointments this week.

The larger baby is growing well and all of her blood flow looks good. Please keep praying that she will continue to grow and develop well.

The smaller baby is still growing, but she is 17 days behind her sister. The smaller baby isn't getting good blood flow through her umbilical cord. The good news is that she is protecting her brain by using the blood she is getting to supply her brain adequately. Unfortunately this could mean that her other organs are suffering because of the lack of proper circulation. She needs special prayers to assure that her entire body is getting enough blood to keep hanging on and not have long term organ damage. She has been experiencing this condition to some degree for atleast 6 weeks now, so we know that she is one tough cookie and has a strong will to live! I am so thankful!

Our new goal for delivery is 32 weeks (4th of July...ish). 7 more weeks and we will have our TWO beautiful baby girls to hold. I can hardly wait!

I am feeling much more hopeful now. Thank you all so much for your continued thoughts and prayers. We are truely blessed!

I also wanted to mention that we have been so lucky to have doctors and other medical staff that care so much about us and our babies. We thank God for our doctors and HIS work through their hands.

Our Baby Story 5-11-2008

2008-05-20T23:16:00.000-07:00

Since we have so many people praying for us and our babies I wanted to share some of the details about our situation.

I am carrying identical twin girls that are sharing the same placenta. One of the babies is abnormally small and the other is growing at a normal rate. The smaller baby is experiencing a serious condition called Selective Intrauterine Growth Restriction (SIUGR).

SIUGR means that the smaller baby is only getting the nutrients she needs to grow and develop from a very small portion of the placenta while the other baby is getting her nutrients from the rest of the placenta. Because the babies share a placenta they also share blood vessels within the placenta. The lives of the twins are linked together through these shared blood vessels. Unfortunately there is a 40% chance that the smaller baby will pass away in the womb. If this occurs, then there is a one in three chance that the larger baby will also pass away or have severe brain damage.

When I saw my doctor last week she told me that I should expect to deliver the babies within the next couple of weeks. This was so scary to me because I was only 23 weeks then and one of my babies wasn't even measuring at 23 weeks.
And then God stepped in...

After some calls by my sister Nikki, me and my doctors we were lucky enough to be invited to participate in a randomized clinical trial (experimental) testing a new surgical procedure to treat this condition. This trial is only being performed in Los Angeles, CA and Tampa, FL, so off to LA we flew.

We saw Dr. Ramen Chmait on Monday and he confirmed that we were good candidates for the study. William and I still wanted to discuss our participation in the study with our doctor in Anchorage, so we took a couple of hours to talk things over. After lunch we met with Dr. Chmait again and agreed to participate. Our name was entered into a computer somewhere on the east coast and we were randomly chosen for the surgical procedure. I prayed that God would make this decision for us by chosing the best option for us. Thank you God! If we had not been chosen for the surgery we would still have participated in the study, but we would have continued with expectant management and delivered the girls very early.

The surgery was scheduled for Tuesday morning.

When I say the surgery is experimental I don't me that it is a brand new surgery. The surgical procedure is the same procedure used to treat Twin To Twin Transfusion Sydrome (which is what the doctors originally thought the girls were experiencing). The experimental part is that it hasn't been used to treat SIUGR.

The surgical procedure is called selective laser photocoagulation of communicating blood vessels (SLPCV). In this procedure a laser is used to block the blood vessels connecting the babies. If the smaller baby does pass away it is hoped that the risk of death or damage to the larger baby will be reduced. This procedure was all done through a small incision in my stomach. A metal tube was inserted through my uterus into the amniotic sac of the larger baby. An endoscope (medical telescope) was passed through the metal tube to locate the connecting blood vessels on the placenta and laser energy was used to block off these blood vessels. AMAZING!
I was awake for the entire surgery. And I have to say it was the scariest thing I have ever experienced in my life so far. I wasn't afraid for me, but for my babies. I was able to watch the surgery on a screen; I didn't watch it all because it was so scary, but I did get to see one of my baby's feet! That was very exciting. The doctor kept saying that she wanted to participate in the surgery because she kept putting her feet in front of the camera :-).

The surgery went well. William and I spent 2 nights in the hospital for monitoring. The best news is that we still have 2 heartbeats! Both babies did well through the surgery! Thank you again God!

I will continue to be on strict bedrest through the rest of my pregnancy. I am also improving my nutrition (lots of extra protein) in hopes that it will help the smaller baby to grow. We will continue to get weekly ultrasounds to check on the babies. For now it is a waiting game, but we are feeling much more hopeful. It will be a long 10 weeks, but we know in our hearts that we will be blessed with 2 beautiful baby girls in the end. It is also good to know that we are participating in a study that is larger than us and will hopefully help other couples/babies in the future.

Please continue to pray for both babies, but the smaller baby needs extra special prayers. She has a 60% chance of survival. I know she is tough, but please pray that she will hang on and get the nutrients she needs to grow. We are hoping to deliver the babies in July around 34 weeks now.

Also, please pray for my husband William. I know this is hard on him too, not to mention he also has to wait on me, comfort me, take care of the house and work! He is so wonderful to me. I thank God for him! He is already such a wonderful father and the girls haven't even arrived yet.
I will try to post weekly updates on how things are going. Thank you all again for your prayers and support. Please let me know if I can return the favor.