Tuesday, December 30, 2008

New Things

Today Magdalena went to see her first movie in the theaters, BOLT!! Noah and I had already seen the movie, so I wasn't sad that I missed out on the first half of it. The beginning time of the movie was the same as Magdalena's feeding time. The point of going was to be there to celebrate Emma's fifth birthday, and her excitement that Magdalena was there made us so happy. Also, getting to the movie theater made a first for our family. It was the first time that I have driven that long of a distance without a backseat rider to watch Magdalena. After Christmas Noah and I went to buy a few things for her, a humidifier, small spoons to fit in her tiny mouth, bibs, a mirror for me to watch her while I drive, etc. So with the help of the mirror Magdalena and I made a safe drive to watch Bolt.

Here is a picture of Magdalena eating rice cereal for the first time. Although it looks like it, she isn't crying, but she is giving that uncertain look about that weird feeling in her mouth.

Sunday, December 28, 2008

Christmas Day 2008

So, normally I would not share this picture with anyone outside of the family, but so many of you love Magdalena that I could not withhold it from you. This is our family on Christmas morning. Magdalena woke up and spent some time with us in our bed, her favorite spot. We had a lovely conversation.





That face says "please stop taking pictures of me...haven't I already proven myself to be a miracle?". Those blue eyes just keep us drawn to her.

Santa came! Look at those presents! Magdalena was obviously the best child this past year!

Mimi and Papa go to all the houses on Christmas morning to watch their grandkids open their presents. Here Mimi is reading a book to Magdalena. It is one with bright colors and contains certain textures.

She has not let go of that balloon, yet! That must have been her favorite gift!
Our family at Mimi and Papa's house before celebrating Christmas with my family.

Mimi has a stocking for each grandchild at her house, but couldn't find the perfect one for Landon (born in April) and Magdalena this year. Emma wanted to be sure that she got one. This is a stocking that she made at school. Mimi worked to squeeze a present in there, which happened to be Magdalena's favorite, Mylacon drops.



Christmas Eve - Part 2

The night before Christmas was James' last night in our house. (James is pictured here hanging in Magdalena's stocking.) He had such great reports to give Santa that Magdalena even got a present early! A gigantic, red balloon! Because Magdalena gets to give James his name we wanted something that would be especially for her but would also make sense to our future kids. James is named after the doctor who endured the tears we shed during each check-up visit, questions, and he honored the many requests that we had concerning Magdalena's special birth. He helped us with many of the decisions that we had to make, and we were blessed to have a doctor to deliver Magdalena that we trusted. I hope to one day let our special doctor know that our elf is named after him! I am sure he would get a few chuckles out of that!
Magdalena has spent a few nights now in her crib! It is so close to our room, and with the monitors we feel comfortable. Here she is in her signature sleep position, arm over eyes, waiting for Santa's arrival.

Saturday, December 27, 2008

Christmas Eve - Part 1

This was definitely the most special Christmas I have ever had, and because it was filled with many happenings I will have to post in segments. We began our morning on Christmas Eve with a visit to the hospital...don't worry it was a happy visit. At the children's hospital Magdalena had a test done to see if she had any problems when swallowing. The speech therapist made Magdalena little barium/formula tasters of different thicknesses to see what she was able to handle.
Magdalena could not eat in the morning so that she would want to be able to take a lot of food by mouth. She was so sweet, and instead of crying she slept peacefully while waiting for her turn.
Here Magdalena was telling us that she had had enough, and that it was time to fill the belly! Look at how cute her face looks when she cries!

Here is the big x-ray machine where she hung out while we ate a little. They wanted to be able to watch the movements inside while the food went down.
She was so happy to be fed, and she did a great job! When they handed me the spoon my heart was filled to the brim with emotion because it was the first time that she would eat with a spoon. Oh, my sweet, big girl.....
I can't really explain what is going on in this x-ray, but I wanted you to be able to see what the speech therapist looked at while I gave Magdalena some food.
Later on in the day we went to my grandmother's house to celebrate Christmas with my dad's side of the family. While there the speech therapist called me with some amazing news....Magdalena passed her test! She could begin eating rice cereal! We are still practicing, so she eats about a tablespoon before we bottle feed. She is doing so well!
Please pray for Magdalena while she suffers through the teething process. She can't hold some of the teethers, so we found one that I can put on my finger. It massages while she gnaws on it. At night though....whew...there are a lot of tears shed, and all of us are lacking sleep.

Tuesday, December 23, 2008

Grace

As rivers, the nearer they come to the ocean whither they tend, the more they increase their waters, and speed their streams; so will grace flow more fully and freely in its near approaches to the ocean of glory. -John Owen

By God's grace Magdalena is here with us today, her 146th day on the earth. Lately my eyes have welled up just looking at her sleeping knowing that it is all because of God I am able to still look at her. She is a miracle. Last Christmas we joked about how crazy the future holidays would be with my parents having five grandkids (there were only three at the time), and Lori reminded me of the tears I shed after finding out Magdalena's diagnosis and the reality that what I had previously said would not happen. God has allowed us one holiday with our sweet daughter and in the next few days we pray that he will give us another, one to celebrate Christ's birth. I don't know why God chose Magdalena, but he has given her a special task on this earth and although we have seen how much she can do, God is still using her to change our hearts. She changes me daily. Even as I watch her now to be sure that she is ok, I stare at her chubby, little arm as it rises and falls with each breath that she takes and I am overwhelmed with happiness.

When we first arrived home I didn't know how to care for her. I was way overprotective, and my rules for everyone that surrounded her seemed overbearing, but thankfully everyone was patient with me as I learned Magdalena's special needs and how to specifically care for her. Now, I am still overprotective but I like to allow everyone to enjoy her as much as I do. Noah and I are researching more about living with a T18 baby and how best to care for them. This can be a problem because each one is has different needs and there are not enough cases to explain. Just as I do T18 babies' lives are counted with days, even if they live beyond a year because each day is a huge blessing to have. Here is some information that reminded me of God's grace and how each day is a blessing.

95% of T18 babies die in utero (1 in 3,000 conceived are T18, 1 in 6,000 are livebirths)
Of liveborn infants, only 50% live 2 months
5-10% will celebrate a year of life

Every life has an effect on this earth, even those who may never be held by their mother. Once a mother always a mother. God has a special purpose for these babies.

Tomorrow morning we will have a test done so that the speech therapist will know how to best help Magdalena take her bottle better and maybe food?!

Thursday, December 18, 2008

Proudest Moment

You wouldn't believe that Magdalena is watching the movie Nemo right now! She is lying on a colorful mat watching a brightly colored movie, and she is loving every moment of it! She has done her neck workout by lying on her belly with me assisting her in a lift. She is trying so hard! On Wednesday we went to see Magdalena's pediatrician, Dr. Brooks, who was so proud (along with us) at how well she was doing. With her encouragement we gave Magdalena two of the four needed immunizations. She said that she is still doing so well that we would hate for her to get something preventable. I teared up not ready for it, but Magdalena showed what a big girl she is! One of the medicines she readily sucked down by mouth and the other, which was a shot, didn't make her cry too much. Then, because she had pulled out her tube that morning, we left for another area of the hospital to have someone in the GI department replace her tube. This nurse was so helpful and informative. She put in a slightly larger tube, and she helped us learn how to feed her better. We have a few goals now. Again, Magdalena was incredible!

With Dr. B's help there are a few things that we are going to begin doing. First, we are going to revisit the cardiologist. Earlier when I decided that we no longer wanted to spend time in the doctor's office we had no idea that Magdalena would be at the point she is today. We think that it would be good to see what has changed so that we know when minor things occur, such as colds, what we can do without hurting the heart worse. Second, Magdalena is going to have a swallow test done on Christmas Eve morning to see what thickness she can swallow. This will allow the speech therapist to know how to help Magdalena take a bottle better and maybe....take a bit of food. We will have to wait and see! There are a few other interventionists that Magdalena will begin to see to help her improve physically!

I am not feeling overly hopeful. I feel proud. This is the proudest that I have ever felt in my life. My little girl is such a fighter.

Uncle Stephen and Loli got some of Caroline and Emma's old clothes out for Magdalena to borrow since she has outgrown her Premie clothes. We had to roll the sleeves up a bit, but I think she feels more comfortable in these clothes!
Look at Magdalena being a big girl taking her immunization by mouth! I think this nurse was surprised that I wanted to take a picture!
Magdalena's new tube requires the feeder to hold up the formula-filled syringe. It really doesn't have to be held this high, but look at Papa working so hard! The picture is kind of blurry because I had to sneak to take it!
After her doctor visits we went to see Kameron. Magdalena met her once before when she first came home, so it was like meeting her for the first time. You can tell how much she likes her! Look at that face! When I picked her up she started to be a little restless because she wanted to stay there!

Sunday, December 14, 2008

To Mimi's House She Goes

Those blessings are sweetest that are won with prayers and won with thanks. -Thomas Goodwin

Magdalena was so sweet last night and gave us a full nights sleep! I was surprised at the time when I woke up, and even then she wasn't crying. She was just a little restless like she was getting hungry, a problem that is easily fixable.

Yesterday Noah and I had to go somewhere that we preferred that Magdalena not make the drive. I cannot tell you where because it is the time of year where there are many secrets that will be revealed in the future, so I will let you know after Christmas. My mom had been wanting to keep Magdalena at her house for some time, but I was just not ready to let go. But because of our errand, we decided to ask Mimi to babysit Magdalena during the day, and of course, she didn't even have to think about it. The entire night before I kept second guessing our decision. Not because my mom is incapable of caring for Magdalena, far from it, but that I just didn't want to leave her for such a long period of time without Noah or me. In the end we decided to take her to her Mimi's house, and we carried her heart monitor, oxygen....everything. Although Magdalena has been doing well we did not want to take a risk. We went through all of the many instructions with my mom before leaving, and I have to admit that my heart just broke. I just didn't think I could leave her, but after shedding a few tears and giving her tons of kisses, I left her snuggling with her Mimi, who would spoil her as much as I do.
I called often to check on Magdalena, and my mom always had her phone nearby, which I made sure of before I left. Once feeling comfortable, Noah and I also had a nice lunch together. Just the two of us. This had not been done in so long, so we decided to try a new type of food, Greek, and the food was so good as well as the time with my husband. We got all that we needed to get done, and we were happy to see our sweet Magdalena once again.

She had a wonderful time with her Mimi playing with Christmas lights, taking a bath, and snuggling. There were so many new things for her to look at while she was there that I know that she had a wonderful time. My mom was so overwhelmed with emotion after the day because she loves taking care of her grandbabies, and we just never knew for sure if Magdalena would have that same special time with her Mimi as all the others do. But she did, and she felt that strong Mimi love.
Of course I left my camera so that we could have lots of pictures from her day at Mim's house.
This picture is from Friday after she had pulled her tube out. She was so happy lying her mommy's and daddy's bed. You can see me in the corner trying to keep "resting my eyes".
Here she is on the same morning. Still happy. Sucking on her arm. Sometimes she gets to her thumb and other times she is satisfied with the entire hand.
Magdalena is so happy about going to Mimi's house! Look at that face!
We got a picture of our family before leaving.
Caroline, Magdalena's cousin, loves her so much! She came over to help Mimi, and she is always such a big help.
After a bath, Mimi and Magdalena snuggled and napped.
Even when we arrived to pick her up, she continued to stare at all of the Christmas lights.

Friday, December 12, 2008

135 Days

There are two zombies walking around our house. Due to the lack of sleep that Magdalena is providing Noah and me now ready to sleep again. It seems as though she is only crying as any normal baby would. The only difference is that when she gets fussy she pulls her tube out, which she has done twice in a row! Thankfully, she has been as sweet as she could be in that situation. She makes it clear that she doesn't like it, but her nurse has been able to get it down.

When we found out about Magdalena having Edward's Syndrome we decided to raise money for the March of Dimes in honor of her. With the help of so many people our team, Magdalena's Feet, raised over 3,000 dollars. The walk this year is May 2nd, and we are hoping to raise at least 5,000 dollars to help all babies and their mothers.

You can help by doing one of the following:

1. Join our Team - Walk with us on May 2nd in honor of Magdalena's life Go to http://www.marchforbabies.org/ and click join a team. Then, you type in our team's name, Magdalena's Feet. From then you type in information to help you.

2. Be a sponsor - You can do this by going online to http://www.marchforbabies.org/julieroberts
OR just click on the March for Babies sidebar

3. Helping us to find companies or organizations who would like to support our team If you have a Facebook page, please consider joining our group, Magdalena's Feet, to keep updated on the walk.

Tuesday, December 09, 2008

Many Happenings

This year we decided not to put up a Christmas tree. Instead we decorated our mantel and put a few decorations around the house. We are going to enjoy a relaxing holiday with candles and small lights so that we aren't stressing over putting up and taking down decorations. I am so excited about the time that our family (Noah, Magdalena, and I) will have together. It began today! I cooked a new, Mexican recipe to celebrate Noah taking his last exam! While Noah spends some quality father/daughter time I thought that I would catch everyone up with some sweet pictures.
Here are the ornaments that Magdalena made at Emma's school. The front has their hand and foot prints, and the back they uniquely wrote her name. Kermit was my stocking holder as a child.


Magdalena's Stocking will be filled by Santa soon because she is always such a sweet girl.

Magdalena went to her first birthday party! Caroline, Magdalena's cousin, was so sweet to let Magdalena borrow her doll's smocked birthday dress. Every child brought a book, and they all exchanged them so that everyone went home with a new book.

Magdalena and the book that she broughtThe birthday kids with Magdalena
She has gotten to moving in certain positions when she sleeps. I had to share this adorable picture of her napping. If you look back to earlier posts you will see that this outfit was long sleeve on her at one time.

Saturday, December 06, 2008

Life Given

I have realized that because Magdalena has lived so long, some people that I encounter think that Magdalena is "better". I am trying to become better at explaining clearly that the doctors don't say that she is better because of the number of days that she has been with us, but that God, for a reason I don't know, has blessed our world with her. No matter how many days that she has with us, it doesn't change her heart problem, her syndrome, and the doctors will never promise one more day.

When I found out that Max went to be with Jesus so soon in life, I cried my eyes out. I was praying that God would give their family a lot of time to enjoy their precious gift. And it is selfish of me to be sad knowing that God used that 3 hours of his earthly life to glorify Him. I also know that it doesn't end there. People will see how beautiful life is and glorify God through Max's family as they share their story. Last night I questioned why God has blessed us with so many days with Magdalena. We are far from deserving any time with her, but in my heart I have to give it to Jesus. Knowing that His plan for each of these T18 babies is different. May we continue to praise God for all of these babies because through each one He is glorified.

Denying that I don't have days when I am mad would be the biggest lie that I have ever told. I have accepted it, but sometimes I just want to find out that God has healed her. I do believe that God could make her perfectly healthy in an instant if He chose that way for her, but I have to daily give her life to Him knowing that He is using it more in this short time than He would in seventy years.

Driving is usually my only alone time, and I enjoy it. It is a time to cry, let things settle in my mind, or let my heart be open to what is happening. It is a time to give Magdalena back to Jesus. Because my car is having technical difficulties which will cost a lot to fix, I have been driving Noah's car. One day he had a c.d. playing of Shane and Shane, a group that I knew he enjoyed. Although I had never listened to any of their cds in full, I let it play one particular day. The song playing "Before The Throne" made my tears fall the entire way to my destination. Since then I have come to listen to more of the songs, and the cd has become a way of worship for me. One of the songs that I have a special place for in my heart is "Healed". It is a song praising God, and one line praises God for healing to the uttermost. God has done just that in our lives, and I praise him for when the time comes for Magdalena when he heals Magdalena. She will no longer have clubbed feet, clenched fists, or a confused mind. I can see her running to Jesus, knowing exactly who He is, and wrap her arms around Him. It is a beautiful picture that allows me to let go of my selfish thoughts and know that the life given to her is better than one I could ever imagine.

Friday, December 05, 2008

Maxson's Family

Please pray for Maxson's family as they praise God for the hours they knew their son, and that they will be at peace with his passing. He went to be with Jesus this morning around 10:20.



There is a link on the side bar to direct you to Max's blog.

Thursday, December 04, 2008

Happy 120 Days, Magdalena!

Yes, our eight pound, beautiful, strong daughter is 120 days old today! I think that both Magdalena and I knew that today was special because I woke up early just thinking about it, and she did the same! Eat a scoop of ice cream (or a drop of Mylacon) in honor of Magdalena today!

Yesterday Magdalena had her eye doctor check-up appointment. While in the NICU the eye doctor did not see any problems, but wanted to continue to check on Magdalena as she became older to be sure that everything continued to be fine. And so far Magdalena is doing fine. The doctor did some basic tests, and Magdalena was such a sweet, big girl the entire time! Even while the nurse put drops in her eyes and through the entire visit, she did not cry one time! We were such proud parents!

After the doctor's visit we went to the NICU to visit one of Magdalena's favorite nurses while she was in the NICU, Nurse Diane. I am sure that you remember her from posts my sister wrote while I was in the hospital. She was the nurse who was in delivery room, so she has been there since day one! Thanks for all that you did for Magdalena, me, and our entire family, Diane!


Dr. M checking Magdalena's vision
Magdalena being a big girl!
Magdalena and Nurse Diane catching up on what's been happening after so long!

Wednesday, December 03, 2008

Prayer

Please pray for Maxson, who was diagnosed with Trisomy 18, and his family. The doctors plan to help him enter this world this Friday, December 5th.

http://ourmiraclemax.blogspot.com/

Wonderful Family Times

As you may have noticed, if your volume is on, I found the Cindy Morgan sound that I had previously posted about and added it. Sometimes listening to the words can be even more powerful than just reading them, so I was happy that it was there for me to share it with all of you.

Our family had an incredible Thanksgiving, and having Magdalena with us casted a light, joyful spirit on our house. As both Halloween and Thanksgiving have passed I am amazed at the gift God has given us. I don't think that I will ever say that enough times....amazed. It isn't as though I thought God was incapable, but I guess that I began to count more on the statistics to rule the situation. I learned my lesson. God is the ultimate healer, and although I "knew" this before, God wanted me to trust it.

Noah's family came from out of town to celebrate the holiday with us, and it is one of the rare times that the entire Roberts clan was together. My mom was the ideal hostess who opened her home, helped prepare food, and so much more.

Magdalena is recovering from a little cold right now, which got better before it got worse. yay! And my ear seems to be healing well, and Noah is hanging in there while he finishes exams this week.

Of course, I must share pictures with you! I don't know if you noticed the large increase of pop tabs that we have gathered for the Ronald McDonald House. I keep an updated number on the sidebar. My nieces, Caroline and Emma, came over to help me count! As usual, a day with those two is always fun!

Last night I took this picture while Magdalena was fighting sleep. She is wearing her Christmas pjs that Mimi bought her, and they are in a big girl (newborn) size! She is about 8 pounds now!