Monday, September 29, 2008

54 Days

It amazes me how much time we have had with Magdalena, and how quickly the time has passed by, and today we were able to celebrate 54 days. No matter how much time we have with her, it will never seem like enough. Sometimes my heart cries out how much I want to keep her when I look into that sweet face as she is chatting with me, but God's plan is much greater. Through her life, no matter how long or short, God is using her to glorify Him in many ways, many of which we will never know. Although I know this, her presence has made a huge impression on my heart which will never go away. For a little bit of time I forgot she was sick, and I really began to think that she may be one of the less than 5% of T18 babies that make it to their first year. However, the cardiologist appointment has brought us back to the reality of how weak her little heart is, and although I want her as long as possible I am praying that God will grant her comfort before my selfishness.

Realizing that we wanted to appreciate every moment our photographer, Andrea Reed, returned to Clinton on Sunday to take some family pictures. We let Magdalena sleep all morning so that she would be fully rested, and since we were taking out her tube for the shots we needed to be sure that she got a really good lunch in her belly. She had other plans because on the way to Loli's house for the pictures she yanked that tube right out of her nose so fast I couldn't stop her! We did what we could for her belly to feel satisfied, but I was worried she would cry the entire time. Magdalena slept through the entire session! We barely got her to crack her eyes open a few times. Just when Andrea left, as you will see in the pictures below, Magdalena opened her eyes to see what was going on at Loli's house.

After pictures we went to church and just as we arrived she wanted a snack. I would rather this be a good nap time for her so that she is not a distraction to others by her cute face and sweet eating noises, but there was nothing that I could do. She sat right behind her favorite nurse, Cheryl, so that she could let her presence be known to someone she loves! Cheryl always helps to keep Magdalena's belly full by replacing the tube when her crazy mommy wants to take pictures!

Landon, Magdalena's cousin, who is about 6 months old, and Magdalena posing together in their matching Jack-O-Lantern outfits. He has gotten good at smiling for the camera and Magdalena is trying to take some tips from him!

Magdalena is her fall outfit getting ready for a family picture. Daddy dressed her, and look how he put two legs where only one leg should be!! She doesn't seem to mind because she loves her special time with Daddy. A Roberts' Family Photo

Magdalena posing in her new pumpkin hat

Friday, September 26, 2008

Resting


Magdalena is obviously breathing harder, which is definitely hard to watch, but we are doing all in our power to make her feel more comfortable. She takes a little of her meals by mouth, but we don't pressure her to eat a lot, and we feed the rest through her tube. She was a lot less fussy today and slept a lot of the time in her swing. Tonight, when it seemed as though she was feeling ok, Magdalena's Mimi and I gave her a good bath. She cried a little during the process but not nearly as much as she has in the past few days. We are so happy that Magdalena was able to rest so peacefully today.

This a Magdalena snuggling with her Loli yesterday after a long, fussy day.

Thursday, September 25, 2008

What a Day..

I can honestly say that between yesterday and today I hit a breaking point. Although we had the tube replaced this morning, Magdalena was continually upset because her feedings were off schedule. I hated to see her like this, not only because she was crying but because it makes it visibly hard for her to breathe and tired. I just want to see her comfortable and happy like how she was when we took the pictures of her in the little basket. Thankfully Loli and Papa came to the rescue today. Loli stopped on the way to her daughters' soccer games so that I could eat something and take a break, and once Papa came later on which allowed me to wash a few towels and pick up while he held her. The things that I did around the house were not urgent, but by doing them and having people watching Magdalena gave me a break. Even while I am writing this I am upstairs while Noah sits downstairs holding Magdalena. It is wonderful just to be given the time to breathe so that I can begin it again tomorrow.
We are beginning the continuous feeding again tonight. It is a machine that feeds Magdalena slowly throughout the night so that she can preserve her energy. Please pray that God will give us patience and endurance during this time of transition, and He will give Magdalena the needed rest so that she feels better. I have seen God do some amazing things since March when we found out about the syndrome, and He continues to truly amaze us with His continuous mercy, mercy far beyond our expectations.

Tube Update

Noah and I are so blessed to have a friend who is a NICU nurse. Medical professionals will give you their advice, but having a friend who knows your heart is much easier to trust. Late last night I asked our special friend her opinion on the bottle feeding and the medications that the doctor had wanted us to begin giving Magdalena. She asked just the right questions to make Noah and me realize that we want to return to our old way of doing things. Magdalena has been using every ounce of her energy to bottle feed, which means while she has been awake she has not been the same smiley, fun girl we know. She has been upset and fussy. We are going to return to doing at least the continuous night feeding, which is a little machine that we attach to her tube which gives her a little bit of formula continuously over night. By using this machine she can sleep through the night and reserve her energy for playing with mommy and daddy during the day.

Wednesday, September 24, 2008

Happy Seven Weeks, Magdalena!

Last Friday our friend Cheryl came over to help us replace Magdalena's tube (she ended up pulling it out on Monday morning), which has to be done every month. While it was out she helped me to take some precious pictures of our sweet daughter that just makes her beauty shine. I know it is hard for you to imagine how little she really is, so I want you to know that her "dress" is really a preemie size shirt

Noah was at home today, so I was happy to get out of the house a bit. I stay here most of the time because I don't like the idea of driving and not being about to watch Magdalena. Because of all of the cravings during my pregnancy my real clothes are too small, so I went to buy some basic items to have to wear on Sunday morning, but I will still be wearing the same thing every week!
Noah stayed at home loving on our sweet girl and studying for his Hebrew class. I think staring at Magdalena's sweet face was probably more fun, so it helped to swallow the Hebrew a bit better. This is his last week at his job, which we are both excited about. He works a lot right now, and Magdalena and I are ready to see him more. Instead of working, he is becoming a church intern which will allow him to do the work that God has called him to do, which he LOVES, and for him to be with his family more.

God continues to show mercy upon us during this difficult time, and He is blessing us more than could ever have imagined.

Tuesday, September 23, 2008

Enjoying Her Everyday

Every Tuesday Magdalena's hospice nurse comes to check on her, and I was ready for today! First, Magdalena pulled her tube out of her nose again! After talking with her nurse, we decided not to put it back in again, but just to feed her whenever she gets hungry and allow her to take in as much as she physically can. She does need to gain weight. However, putting on weight will cause more strain on her heart, so our goal is for her to be comfortable by eating enough to allow her to sleep well, feel well, and to fill up her diaper enough during the day. We are not going to just "force" calories down here.

Second, we may take her apnea monitor off during the day soon. She hasn't had spells in awhile and may have moved beyond that stage. It isn't our highest concern anymore. We just want to be able to enjoy her beauty and sweet personality without cords and tubes attached. Sometime in the next few days we are going to download the information from the monitor so that a doctor can tell us how many times she has had a true apnea spell while it has been on.

Although I will still ask many questions to feel 100% wonderful about major decisions Noah and I make concerning surgery, I am already feeling a little more peace about not having it. The nurse reminded me of the many complications she could possibly have during it that a normal baby wouldn't have, which would take her life instead of giving her longer time. Early on Noah and I agreed that we wanted to just enjoy her for however long we had. We didn't want to hold on for so long that she had to endure more pain and that we were focused on what we could do to fix the unfixable problem and forgetting just to enjoy her.

Monday, September 22, 2008

Magdalena's Heart

Our day began with us trying to leave the house and realizing that Magdalena had pulled her feeding tube out of her nose! We didn't have time to worry about it then because we had to be on our way. Thankfully, she slept past her feeding time which meant she woke hungry and was able to eat a full feeding by mouth. After her cardiologist appointment we went to the NICU at Baptist to have one of our favorite nurses put one in her nose before her afternoon feeding.

The appointment today seemed overwhelming. It began as we were sitting in the waiting room, and as most women do there was small talk occurring, which was fine until personal questions began to arise about Magdalena's health. It didn't bother Noah, but I just don't like talking about her syndrome in a doctors office. Maybe it is because my emotions are going crazy as it is. Mothers were talking about their experiences with their children having heart surgery, etc.

Magdalena did great. She hardly cried during the echo and when the doctor listened to her heart. Her heart problems have not healed on their own. The oxygen and blood in her body is mixing too much. The vessel that normally closes with babies in the first week following birth has not closed in her heart. Also, there is a hole. This is fixable with surgery, but Noah and I have to be careful about the surgical decisions that we make. We don't want her to spend her short life in pain trying to heal from a surgery while another part of her body is failing. However long she is with us we want her to be happy. When we returned to the house I called the geneticist who can look at Magdalena's individual situation and hopefully give us some better information so that we can make an informed decision. I say this because so many doctors are negative about any attempts to extend the life of a T18 baby because most of them have so many problems that it is better to just let go. We are praying that our geneticist can look at Magdalena's charts and explain to us if her heart is her only major problem or are there others about to occur. Magdalena will always have delays metally and physically, but our concern is with major health issues.

We want to feel a peace about the decision we make with no regrets and what ifs knowing that we have made the decisions that will bring glory to God through our beautiful daughter.

Sunday, September 21, 2008

Tomorrow's Nerves

Please pray for us as we prepare ourselves for our cardiologist appointment for tomorrow! I am nervous, scared, excited, etc. about what the doctor may tell us. Magdalena's heart is her biggest hurdle right now. Because each T18 baby is different, it is hard to know what to expect in the future, and the doctors cannot give us specific information. I would love to go and receive positive news, but I think that I would most want to hear is that whatever my daughter may have is not painful and that she can live happily held by her family.


Here are some pictures that I wanted to share and forgot to do so in the earlier post.



Here is a picture of Magdalena looking at Loli's picture longing for her to come and spoil her a little bit. Magdalena always takes a good nap while being held by her.


The picture below will be one to treasure for all times. These are my Dad's parents, Grandmom and Granddad, Magdalena's great-grandparents, holding Magdalena. My Granddad has Alzheimers and because of his health lives at the Veterans nursing home, so we were so excited to have him at his home on this rare day. The have been sweethearts since grade school, and my sisters and I have so many memories with them. When we were yonger they would take me, my sisters, and my cousins to Opryland every year. We would play during the day while camping at night. I could go on and on sharing tons of memories with you, but it is hard for me to share all the details that made it special without writing a book. To shorten, just know that we were loved by them, and today our kids feel the same love. Grandmom LOVES to hold those babies and for the older ones to spend the night with her. The statistics gave us a possible reality for us, but we are truly being blessed, and now, this picture, a picture that I never could have imagined to have, just makes me cry happy tears. My Granddad was able to hold my beautiful daughter! How amazing!



Friday, September 19, 2008

Keep Going!

Thanks to every person who has been collecting pop tabs! Keep Going!! Look at how many we are getting!

A "little bit" of information

It seems as though this week has passed by so quickly. Magdalena needed some personal attention this week while her tummy wasn't feeling well, and I understood how sometimes when you don't feel well just to have someone hold you helps. She is now feeling much better, and this was very evident yesterday. Her little personality was bright and shining as we did her exercises, sang, and danced together. Her little smile has returned to her beautiful face. Oh, I am so happy that she is feeling better! Thank you so much for praying for her!

Magdalena's Loli calls her "little bit", and she has done this since her birth. But I wanted to share with you what Loli, my oldest sister, did this past week. While Noah was home I had some time to get out of the house, and Loli would always stops by to see her every second that she can. I returned one day to find that Loli had put a picture of herself in Magdalena's bassinet! This must have helped her to feel better because any time she opened her eyes she could see Loli's face!

Also, here is a link to Magdalena's Baptism in which you get the front view! Thanks to Daniel Elliot for being our professional photographer and Sam Higganbotham for getting it online for us!
http://www.youtube.com/watch?v=D4OXsXPJE9g

Tuesday, September 16, 2008

Rumblings in the Tummy

Last Thursday we began to give Magdalena a different formula, which gave her the same nutrition but was a different brand name. This did not go over well with her little tummy, and since then has been making her not feel well. And yesterday I decided to switch back because she was obviously upset. She has cried until she can cry no more (her little cries are so sad sounding), so now it is just a matter of waiting until the old formula clears out of her system. Yesterday Noah and I missed her because she had to sleep a little more than usual, and her little personality was just not as upbeat as it has been.

We always enjoy it when Magdalena gets to experience "normal baby" things, but knowing that her life may be shorter than some we don't want her to live uncomfortably for even a moment.

Sunday, September 14, 2008

POP

People, we have got to get our act together! We only have 2,210 pop tabs for the Ronald McDonald House!! The Coke and Pepsi people are still in business so I know that cans are still being bought, and families whose children need medical assistance will benefit from these tabs!! While the children are receiving medical care the Ronald McDonald House gives the family a place to stay so that they can remain together.
I posted about this earlier in the summer. Here is the link:
http://noahandjulieroberts.blogspot.com/2008/06/pop-tabs-for-ronald-mcdonald.html

This is so simple! You don't have to spend any extra of your money and you are still giving! I have just had this same conversation with Noah because although he has collected some (he wanted me to be sure to give him this credit on this post), while at work he tends to forget to collect them! If you live locally, Noah and I will pick them up from your home! If you live elsewhere, please find a local Ronald McDonald chapter and post how many you have donated so we can keep up with how much we have been able to collect.
Here is a better explanation of how these tabs help, which is found on the Ronald McDonald House website.

Many Ronald McDonald Houses work with local recycling centers to raise money by collecting tabs from aluminum cans.

Ronald McDonald Houses collect pop tabs instead of entire aluminum cans because the tabs are pure high-quality aluminum, unlike cans, which consist of aluminum and other alloys. Tabs are also easier to store than whole cans.

If your local Ronald McDonald House participates in the program, it’s likely cardboard collection containers in the shape of a house have been distributed to schools, community and civic groups and other organizations in your area, as well as at the Ronald McDonald House, local McDonald’s restaurants, local banks and grocery stores. You can collect pop tabs to donate to your House.
After the tabs are collected, the local RMHC Chapter brings the collection to local recycling centers, where they are weighed to determine their value. One pound of tabs is worth 57 cents, and one gallon of pop tabs (4,175 tabs) is worth $1.49.

The recycling center then sends the local RMHC Chapter or House a check for the total value. To date, more than 400 million pop tabs have been collected, generating more than $4 million.

Friday, September 12, 2008

Magdalena and Her T18

Sometimes it is hard for me to remember that our sweet Magdalena is sick. She looks so normal and beautiful. Edward's Syndrome is different for each case, and only if looking for it can you see it. Oh, we always tease her about pointing at us. When she does it we talk at her saying "are you giving me the finger?". In reality that is a small, insignificant sign of the syndrome. I won't go into all of them because those special unique qualities are not noticeable unless looked for. Well, I don't want her to be searched over, even if it is not intended, but I want her precious face and personality to be enjoyed.


Although many problems have not shown themselves yet, Magdalena's main battle is her heart. We have an appointment with a cardiologist on September 22, and I am praying that we will have a better understanding of the problem and what we should expect in the future. Here is a picture of Magdalena wearing her apnea monitor. (Look at her legs! They are so little!) The buzzer goes off when her heart rate is too low or too high or if she has stopped breathing. Like I have said in previous posts there do come times when we just want to enjoy her while we can, and we will take it off in situations in which she will be held by someone who can see if a problem occurs by looking at Magdalena's appearance.

Thursday, September 11, 2008

40,000 Hits!

I am going to jump in here because I know that Julie and Noah won't have time to mention this to you guys. Today, this blog hit over 40,000 hits! That is absolutely amazing! Julie and Noah started the blog shortly after Magdalena had been diagnosed as a release. The family had found so many other blogs from people going through the same thing and it was so helpful to us. As word spread about their blog, I realized that the blog was having a bigger impact than Julie and Noah realized. I finally convinced Julie to put a counter on her blog in June - so the 40,000 hits have actually just been since June! Thank you so much to all of you for being such an encouragement to our family. Julie and Noah have no idea how much their faith through this situatution has had such a huge impact on all of us. Thank you, Julie and Noah, for sharing so many of your deepest thoughts and feelings with us and opening your lives so that we may examine our own. We Love You!

Magdalena's First YouTube Video

One of the things that Noah and I most desired was to be able to bring Magdalena home and to have her baptized in the church. God has given us both, and He continues to give us more experiences so that we can know our daughter more.
Gigi recorded Magdalena's baptism on her digital camera and put it on YouTube to share it with everyone. Here is the link!
Our incredibly awesome friend, Daniel Elliot, recorded from the front so it is probably clearer to hear. If you know how to transfer from a small video tape to put on YouTube...Let me know! We would love to share this incredible gift from God with everyone.

http://www.youtube.com/watch?v=OsYS5MgKKmE&feature=email

Also, this video shows Mimi and Papa trying to sneak in during the prayer!

Wednesday, September 10, 2008

How do You Say Her Name??

So many people have seen Magdalena's name in writing, but they have never heard it being said. For this reason, I have decided to explain how to pronounce it. Of course, it is strange, but Noah and I wanted something unique. Also, we both speak Spanish and loved Mary Magdalene's name in Spanish....Magdalena.

So here it is .....



MAD - UH - LAY - NUH



Yes, the "g" is silent, and it is incorrect to pronounce it in a way that it sounds like Madeline. Notice that it is "lay" which means that it has a long "a", not a long "e".



Sorry folks...no nickname. Don't worry if you say it wrong! Just give it a try! You will not offend us by saying it wrong.



Have you ever seen the movie Anne of Green Gables? It is one of our favorites! When asked her name Anne always replies that it is "Anne with an E". She is proud of its uniqueness and so are we of our precious baby's name. Please forgive us for not accepting anything less! I know what you are thinking....and yes, .....we are SO those parents!! Hee hee!

Tuesday, September 09, 2008

Happy Five Week Birthday!


Dr. C and Nurse A with Magdalena

I had my five week check up with the doctor, and as of now everything seems fine. Everyone says that the more you walk the better you feel. I definitely believe that to be true. I had motivation, walking to see Magdalena in the NICU, which allowed me to heal and feel better much faster. Dr. C and A helped our family so much through the unknown weeks and emotional rollar coaster in which we waited for Magdalena's arrival which is why I wanted Magdalena to meet them and get her picture made with them. God blessed us so much by putting them in our lives. God knew exactly what we needed before we did.



After the doctor's appointment, we visited our friends at our favorite store. Magdalena is a hat snob. It is hard to find a hat that fits her small head and when a hat falls below her head she gets so upset. There we have always been able to find clothes and hats that fit her small body. Mimi bought Magdalena the sweetest bonnet that fits her head. I will have to put a picture of it up soon because it is SO cute!

Then, we HAD to go eat lunch and visit Papa at work. Here is a picture of them together! Because I am not comfortable with driving with her being out of my sight, Mimi went with us. We were so thankful that she was able to come with us and to help us with Magdalena's first day out and about.

Lastly, we took a big step and went to Target together. I was nervous, but everything worked out well. I want to be able to take Magdalena with me to these special places, and I found out that she is like her mommy and loves to shop with her Mimi and Mommy!

Every time Magdalena has her eyes open someone is holding her, and this is because I don't want her just lie there. I want her to know that she is loved and to feel it. However, I have realized that this is not realistic for continuing the daily needs of a household. Right now we are completely spoiled with all of the generous people who have kept me from thinking about cooking. It takes one thing off of my mind. Magdalena needs to be able to sit there awake at times so that I can keep clothes clean and the house running. All of this to say we bought Magdalena her first swing! (We didn't consider the battteries so we will have to get those tomorrow.) I am watching her in it constantly right now to make sure that she is able to breathe in it comfortably.



Daddy putting the swing together after coming home from work.



Here are pictures of her the first time she sat in her swing.

I did want to show this picture of Magdalena and her great-grandmother, Grandmom, who comes by frequently to see her. Look at the love in this picture!

Thursday, September 04, 2008

Mommy's BIG Day

Mimi and Papa with their five grandkids on Mimi's birthday

Mimi and Magdalena


Today I feel as a mom does when sending their kids off to college or watching them get married. There comes that point where you have to let go, and for every person and every situation the timing is different. After sitting with Magdalena over the past two weeks I have wondered if this is what we will continue to do. What I mean is that the question arises whether or not I will get over my fear of doing anything or put myself in a hole. We didn't know if we would bring her home, so we never discussed how we would do things if she should arrive here. And I don't want this fear doing anything for the sake of Magdalena, Noah, me or the rest of those who love our sweet girl. She will never be "normal", so I can't do what a normal parent would in certain situations, but our lives do not need to be sat in a house as though I am waiting for her to die. We MUST be super careful, and I think that I will continue to let hardly anyone hold her except for us. We don't know how much time we have with her, but noone knows this for anyone they love, and for this reason our lives must continue.

All of this to say...

Magdalena had her first babysitter today. Her Papa watched her without any parents around. I was completely nervous even though it was for such a short period of time while I ran an errand. In any situation my dad would have done a great job, but I couldn't help but to be scared. Papa knew the drill on what to do in case she had any apnea problems.

Also, today is Mimi's birthday!! She loved spending time with all of her grandkids together! (Look at pictures above.) Magdalena went to Mimi's house for the first time, and one of the few outings that Magdalena has been on.

A few incredible things have happened that I also want to share with you....Magdalena's birth certificate and social security card have arrived!! Yay!
And today she took an entire feeding by bottle at her 9:00 feeding!! This is HUGE for her because of how difficult it is for her to take a bottle. She takes the most by bottle at this feeding time, so we took it slow and she did it! Now, she is resting from the hard workout.

Lastly, Magdalena has officially gotten a double chin. With her clothes, socks, and hat on she weighs 4 pounds and 12 ounces!! Her preemie clothes are still too big, but they are fitting her much better!! It is good for her to put on weight, but we still have to be careful so that her heart can handle the gain.

Wednesday, September 03, 2008

Magdalena's Busy Day

Yesterday we began the day going to see the geneticist, who both Noah and I liked very much. The doctor was not unrealistically optimistic, but gave us a starting point for where we should begin at home. In so many situations people want to compare Magdalena to a normal baby with how she is growing and what she does, but it sets unrealistic standards for how she is developing and how we should care for her. However, one of the things that we were given was a growth chart so that Noah and I can keep up with how Magdalena is doing for a T18 baby. Also, by meeting with this doctor we have a contact in order to learn more as we head down this unknown road.
Then, we were able to show off Magdalena to some of the people that I work with. Magdalena was then seen by the pediatrician for the first time.
We are so thankful that Magdalena rides well in her car seat. She is so small in comparison to the seat that I was suprised that she could get comfortable enough to sleep, which she did most of the day. I think that she enjoyed spending the day with both her mommy and daddy, even if it was in doctors' appointments.

Also, I want to shout for everyone to hear.....
HAPPY FOUR WEEK BIRTHDAY, MAGDALENA!!