O Love That Will Not Let Me Go

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 wante...

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.

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 tomo...

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.

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 Heb...

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...

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 du...

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...

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

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 an...

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.

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 chapte...

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 li...

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!

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!

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 ...

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 h...

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 ...

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 ...