O Love That Will Not Let Me Go

That is the noise that makes us jump quickly to our feet. We were glad to have gone without it for two days, but then, in one night it just couldn't stop. Last night we woke a few times to the sound of the noise because Magdalena's heart rate dropped lower than it should. Even this morning it went off again. We enjoy not hearing it for awhile, and it means that her little body is getting rested up for the time when it does. Right now her little body is resting up for the rest of the day. By her breathing I can tell that she is sleeping well, the way that I really like for her to sleep. With her eyes open or closed she is beautiful in every way. Even the parts of her body that show her syndrome just make her life obviously special. GUSTAV... Also, we are unsure of how the storm will affect our electricity, etc. here so we may not be able to blog for a little while.

These were taken after Magdalena's first bath at home on Monday, August 25.

Yesterday was a good, calm day. Being able to rest my mind was an incredible blessing while Magdalena rested all day. She was tired from the day before, which kept her sleeping most of the day, but a few times in the day she would keep her eyes wide open for about an hour. It was sweet as though she were talking with me. Her little mannerisms let me know her better like poking her lips out at me or giving me a little sligh grin. I did not bottle feed her all day in hopes of preserving any little bit of energy she should have. Still at the end of the day Magdalena only had her heart rate drop once in the day, and it was still a little episode. She is just SO beautiful, and I love her so much! I am hoping to add more to this later, but I did want to share Magdalena's good day....and possibly more pictures!

I am able to take the time to post right now while my mom is holding our precious Magdalena. Before her breakfast this morning her heart rate lowered too low, but with a little reminder it resumed to a good speed. When her apnea monitor sounds I am always on edge not knowing, but at the same time, on many occasions she pulls up her heart rate and breathing herself. Then, during breakfast I noticed her color changing so quickly. I jumped up and began to pat her trying my best to remind her to breathe, but no matter how hard she was trying, she just couldn't do it. I ran to the oxygen machine and while hitting her back I waved the oxygen in front of her face until her color returned. I thought to myself "ok, I knew that this would happen", and I called Noah to let him know the situation. I continued to feed her breakfast when it happened it again, but I had a harder time getting her color to return. After calling Noah again he began on his way home. Something just w...

Today Lori, my oldest sister, took the day off from work to help me with Magdalena. It was definitely a restful day, and we were able to spend some time together working on some obvious changes in the blog. Magdalena hung in there with us! Although Magdalena smelled the room up with her gas, we had a great time with her. Because of all the fun that I had with Magdalena last night and today I decided to title this blog after one of the songs that will play on the blog, Girls just wanna have fun. Even through a few of her apnea spells (her heart rate drops too low), I really enjoyed my sweet daughter using only laughter and not tears. Her long feet with her wrinkly knees are always so cute as she streches, and she enjoys for me to rub her legs. I don't think that I will ever be able to express how precious she is to me. God has been gracious to give this much time to us, and we do not deserve it. The past few days spent with Magdalena at home are what Noah and I have desired ...

Lori and I have obviously been playing with the blog so that we can share more pictures. There are three posts for August 24th, and since we have learned this new trick more pictures have been added to previous posts to show off Magdalena's sweet life being born. I am sorry if this is confusing. Please be patient with us as we learn new blogging techniques.

Magdalena wore this outfit to celebrate Caroline's (her cousin) birthday on Aug. 21. Mommy's first time to bathe Magdalena. Please forgive us for the last blogging that Noah and I tried to do together. After a long week in the hospital we finally had time to discuss and update the blog. We wrote it together with much thought, and then, the internet from the hospital rolled over to the next day and cut our connection off. We had no idea, and it was too late to write as much as we had initially done. Noah was so tired, and yet, was so helpful to me to rewrite it for me. Peace...I know that I should be feeling a load of this since we have had a HUGE prayer answered being able to spend 19 wonderful days with our daughter and bring her home. As you will read on many T18 blogs, this is very uncommon. When I was about to go into surgery I had no idea how long I would know my daughter, if at all, and God has blessed us with 19 wonder days with our sweet daughter. Yet, because each day ...

Noah and I have spent some time over the last few days trying to find words to add to the blog, but it wasn't until today that we felt as though we were ready to share all that has happened this week. We arrived to the hospital on Monday thinking that we would be bringing Magdalena home Wednesday or Thursday, and we would spend the night in order to learn how to best care for her. By Tuesday we knew that the earliest day would be Friday so that the hospital staff could have the time to get us ready for the big day. Tuesday night we had our first "real" encounter with what Magdalena's syndrome consists of on a daily basis. We had just begun to feel comfortable with the type of feedings that we would give her. The day was ending when Magdalena's apnea alarm sounded to let us know that she was not taking in the amount of oxygen needed. After giving her a second to pull it up on her own, which happens frequently I began to rub her to help her a bit. I picked h...

We are in the hospital for a few nights so that we can learn how to care for Magdalena with her special needs. Tonight we have learned to feed her by using a syringe, and tomorrow the at home health center will come to the hospital to show us how to use the mechanical pump. I was so excited that there was an alternative way to feeding her for the times that we would be at church, Mimi and Papa's house, etc. Although tonight has been tiring, it has been fun and emotional with so much enjoyment. Through this short time already I feel more comfortable with many things that I have to do. However, when she is taking in less oxygen or her heart rate goes down my heart just sinks as the loud buzzer sounds realizing how much I will have to learn how to recognize it without all of the hospital machinery. Earlier this evening Magdalena's heart rate continued to rise, and I realized that this had never happened in front of the nurses. I had no idea what to do! We called the NICU n...

Yesterday we took this picture, and I am so excited how well it turned out. Her eyes are open and looking to show you a little of her personality. The meeting with the doctor went well yesterday, but I no matter what we are discussing the tears tend to fall. I am so thankful that we have the chance to know our daughter more, but now there is a different pain/fear. In my mind I know that none of us know the amount of time here on earth, but my heart just doesn't understand. I never knew that I would love her this much. I have just attempted, and finally, with Noah's help, put together monitors in hopes that we will bring her home this week. It is hard to believe that this possibility exists, but I am so excited. Magdalena is digesting the amount of calories necessary, and as of yesterday she had put on a little weight. She now weighs 3.13! Because of Magdalena's size and apnea she had a pass a test to be able to ride in a car seat. She did so well and passed!! We are so pr...

Uncle Adam and Magdalena Daniel (to the left behind wall), Carter, Katie, and Addie Today Magdalena had some friends and Uncle Adam to come say hello and give her some sweet love, so I wanted to share some pictures. Today Magdalena is continuing to improve the amount of food that she digests. She has a small tube in her nose that helps for her to intake when she has trouble taking the amount of needed calories by mouth. Magdalena's sweet nurse for today, Sondra, sat and explained so much that will be happening in the upcoming days and some of the things that we might need for her arrival. Tomorrow Noah and I will be meeting with Magdalena's doctor to learn about her home health care. On Monday night (and possibly Tuesday) Noah and I will be spending the night in the hospital to be able to care for Magdalena in a private room but having the nurses nearby. When everyone feels comfortable she will come home, which we are planning to be Wednesday, but we have learned t...

Yesterday I surprised Noah with this sweet outfit on Magdalena, and look how sweet they are together! That sweet premie outfit just swallows her! We are hoping to bring her home next week, but she must be able to digest her food so that her calorie intake is up. As parents of a special child we will have to learn a lot of things about caring for her, so please pray for us. I know that God us with the strength needed, but I am nervous about all that will be expected of us. I went to Target to get a few things for her arrival, and I was definitely overwhelmed by what she may or may not need and all that is to come. I didn't think that we would have such a big blessing of even having the possibility of bringing her home, so we are definitely excited about what may happen next week. -Julie

As Magdalena's father, I first want to say that I am so proud of her and so thankful to God for taking care of her thus far. She has been the most amazing blessing in our lives and every day with her is precious. She is so beautiful and sweet. Today was a very good day. Julie visited Magdalena for several hours this afternoon and the nurses told her that because Magdalena had eaten and digested so well, they removed the IV that had been giving her nutrients and keeping her hydrated. This is wonderful news! I had the chance to spend a few minutes with her and she is more and more beautiful every day. After visiting with Magdalena, Julie and her mother took a trip over to our special store to do a little shopping to expand Magdalena's wardrobe. They found the cutest little hat and booties and some tiny thermal underwear to keep her warm when she needs to be. After some shopping, they went back to the hospital where Gigi (Jennifer), Laura and Landon met them to visit with Ma...

Tonight I got to go with Julie to Magdalena's 9:00 visit. We got there at the exact time Magdalena opened her eyes and she was wide awake! It was so neat to watch her looking around. I was standing over talking to her while Julie was sitting in the chair next to her. As soon as Julie opened her mouth and started talking, Magdalena's eyes shot straight over to where Julie was sitting. She knew her Mommy's voice! I had to put this picture on though because she's had been sticking her tongue in and out and I just happened to catch it in action here! How great is our God!!!

I'm working away from the office today...so this post is coming from my Blackberry. Please forgive the short nature of this post and any misspelled words!! Julie just sent me a message that Magdalena took a full 23cc feeding earlier today. Right now she is trying to feed her using the bottle. More to come tonight! Stephen

This post may not express all that is happening right now, but I wanted to say a few words because my incredible sister and brother-in-law have continued updates. I have just now finished reading all that they have read and all of the kind words that you have sent our way. Right now I can't believe that I am home, and I miss Magdalena. Noah and I are blessed to have an amazing doctor to help us through the situation, and upon Magdalena's arrival I was able to touch her. I thought that I loved her when she was inside me, but that does not compare to the love that I have for her now. Even seeing Noah hold her I see the same love expressed, and it makes me teary. Today she had a good day, and we are thankful for the NICU nurses who are so patient and give her extra time to learn daily functions. They put up with me being in there asking a million questions and falling asleep. Please pray for the strength for us to learn how to care for Magdalena with her special needs if s...

I don't have much of an update tonight, but didn't want you to think something was wrong if I didn't update. Julie is home and is doing as well as can be expected. She was encouraged by Magdalena having a good day today. Magdalena's awesome nurse, Wren, had her drink 17 cc's this morning and 17 cc's tonight. She was very alert tonight and was focusing in on some of the different objects around her. Unfortunately, I didn't make it up to the hospital today so I didn't get a chance to take a picture of her myself. I will have you one tomorrow though because I am going up there!

As many of you know, Julie has been able to extend her stay at the hospital a couple of times. It's been great for her to be close to Magdalena while she has been recovering. Well, she is currently in the process of getting her things ready to leave and go home from the hospital. So here's the latest request: -Please pray for peace as they leave the hospital, drive home and walk into their home for the first time since Magdalena's birth. Also pray that the peace that God gives them tonight will allow them to receive some much needed rest! Magdalena's Update Magdalena has had a good day today. The nurses are trying to keep her off of the warmer today to see if her body temperature will hold. She also had a great feeding thanks to the patience of the amazing Wren, her NICU nurse. One amazing piece of the puzzle is that she does not have any of the major problems problems normally associated with Trisomy 18. The doctors are still trying to get her prepared to go home ...

Andrea just sent Julie a sneak peak of the pictures she took on Saturday. Julie asked me to go ahead and share them with you on the blog - They are gorgeous! Once again, if you are ever in need of a photographer, I highly recommend her to you.

Today there aren't really many updates about Magdalena. Julie and Noah are boarding at the hospital so Julie can visit with her, rest, and then go back. Magdalena's doctor did say that he would like for Magdalena to have a goal to go home at the end of the week. So, please pray that Julie and Noah will get some much needed rest this week and will be able to take Magdalena home at the end of the week. Julie celebrating her birthday with Magdalena As a side note, tomorrow (Tuesday) is Julie and Noah's 2nd anniversary. HAPPY ANNIVERSARY, JULIE AND NOAH!

Today was an encouraging day for Julie and Noah. Magdalena had two dirty diapers this morning in a short period of time - so that showed she is digesting the food from the tube in her nose. Also, by the end of the afternoon, Magdalena had been taken off oxygen completely and her heartbeat was staying steady. Jennifer, our other sister, was feeling excluded because I have not put a picture of her with Magdalena on the blog. Of course, until today they had all been taken with her camera so I didn't have one of her. This afternoon, we were able to spend a little sister time in the room with Julie. It's always nice when the three of us get together - it just has a calming effect. Julie, Gigi, and Magdalena A Special Friend One of my friends, Teresa , and her daughter, Macala, came to the hospital this afternoon with a special project in mind. Teresa had the clay and got Magdalena's handprints and footprints so Julie and Noah will have them as a keepsake. She also brou...

I just saw this quote on a website http://www.stringofpearlsonline.org/ and thought it was perfect for Magdalena - so I just had to share! There is no foot so small that it cannot leave an imprint on the world. —Anonymous

I apologize for falling down on my job today and not updating you on yesterday's events. It was very late when I got home from the hospital and just didn't know where to start. Update on Julie and Magdalena's Health: As you know, Magdalena has an IV to make sure she is staying hydrated. The doctors/nurses have also decided that although she was drinking from the bottle, she was burning more calories trying to suck than taking them in so they have stopped most of that for now. She is mainly being fed from a tube going up her nose. Yesterday, her heart rate kept going up and down so this afternoon the nurses put her back on the oxygen line and it's helped keep her heartbeat steady again. Julie was very sore yesterday but is feeling a little better today. She is still not getting as much rest as she should - but it's understandable. Julie will be discharged from the hospital on Sunday. Please pray that she will have the strength to leave the hospital without Magdalen...

Sorry about taking so long to update today. Not a whole lot to report at this point. Here's what I have right now: -Julie was told that she could be discharged today. However the insurance said that they would approve her to stay thru Sunday at this point. Great news, seeing that she can continue to recover and be close to Magdalena!!! -Magdalena was put back on an IV to day. She is not digesting as much of her feedings as they would like to see and they do not want her to get dehydrated. -Another concern is one of Magdalena's eyes. It has a glaze to it that the other does not. An eye doctor will look at it in the next day or so. All for now! Lori will probably update with a little more detail tonight with some sweet pictures to look at! Stephen

As you are probably aware by now, I don't have access to the this website during the day so my husband briefly updates it while I'm at school to makes sure everyone is aware of the latest news on Magdalena, Julie, and Noah - since it changes so often. I was awakened this morning (technically Thursday morning) by a text message from Julie at 6:34 am saying she had just finished feeding Magdalena her bottle. As you can imagine, I jumped out of the bed squealing that I had just typed that prayer request a little earlier and God had already answered it! I couldn't help but go back to school this morning with a bounce in my step! So, let me go in a little more detail about today's exciting events: 1. Magdalena drank her first bottle this morning (I believe around 11 cc's). 2. She has not had to get back on the C-PAP at all since last night. 3. Noah gave Magdalena her first bath and put clothes on her! 4. Although she only drank about 2 cc's each time, she still attem...

After Magdalena was born yesterday morning, the doctors did a battery of x-rays, tests and blood work to find out what issues were present and unknown at that point. One concern that was present during a very early ultrasound was a hole in her heart. It was during this ultrasound that the determination was made to send Julie to have an amniocentesis done leading to the diagnosis of Trisomy 18. The x-rays taken yesterday show that that hole DOES NOT exist anymore. A definate PRAISE!! We are still waiting for more results from the rest of the tests. Julie and Noah have spent a good amount of time this afternoon with Magdalena in the NICU. Julie is up and walking and made it all the way from her room to the NICU!!! She is in some pain after making that trip but is still in good spirits. Please continue to pray that Magdalena continues to take her bottle. She did not do as well during her feeding this afternoon. More to Come!!! Stephen

Here's the latest update from the hospital. Noah was able to give Magdalena her first bath this morning. Unfortunately, there will not be a picture posted since there was no camera around when it happened. She is still making progress in the NICU and is being cared for by a great group of nurses over there. Julie has started to move around a little more today. With that, she is starting to feel a little more pain. Dr. C informed her that she could possibly begin to do some walking today. Just as a side note, Julie and Noah are being updated on your comments left here. So know that your thoughts are being expressed to them as they are received. Stephen

After a long day for Noah and Julie, both got some much needed rest last night. Last night, the NICU nurses let them know that they were going to try to feed Magdalena with a bottle this morning for the first time. And low and behold, at 5:30am Julie was able to feed her by bottle!!! Pictures will follow later since we were not at the hospital when this occured. She was taken off the CPAP after the feeding to see how she did today without it. So..that's two requests that can be taken off of the list!!!! Here are a couple of other items that we can add in their place: - That Julie and Noah will continue to receive the rest they need. - That Magdalena will continue to make progress, by way of continuing to take her bottle and staying off the CPAP. - That Julie will have a speedy recovery from the C-Section. - That Magdalena will feel no pain as she continues to progress. I'll send another update a little later. Know that you are loved! Uncle Stephen

What an exciting day it has been! Magdalena Grace Roberts was born this morning at 8:18. She was 3 pounds, 15 ounces and 18 inches long. It was as if God had a list of each specific prayer request we have had about today and just marked them off the list. Let me list some of them for you: 1. Magdalena is alive. 2. Julie was able to hold Magdalena and look into her eyes immediately after she was born. 3. She was breathing on her own. 4. Around lunch, Julie was able to go down and check on her for a little while. 5. Although she tried the pacifier with the C-PAP on, she still tried to suck on it. 6. She had wet and dirty diapers. 6. Magdalena and Julie had some AWESOME nurses and staff take care of them today. 7. At the end of the day, Julie and Noah were able to hold Magdalena. When Magdalena was diagnosed with Trisomy 18, it seemed as though the cards were stacked against her. As a family, we have learned to appreciate each day and celebrate each milestone. Whil...