Sunday, August 31, 2008
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.
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.
Thursday, August 28, 2008
I am hoping to add more to this later, but I did want to share Magdalena's good day....and possibly more pictures!
Tuesday, August 26, 2008
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 wasn't right....
Instead of her color getting better it continued to get worse. She had stopped breathing and her heart rate had lowered. As I sat there in tears I kept begging for her to fight, I realized that she had already done that for so long. I had gotten everything that I had prayed for already. We were able to spend time with her, know her, love her, baptize her, and bring her home with us. We were already given much more than we expected when first entering the delivery room.
When all of this flashed through my head I realized that I was ok to let her go. I didn't want it, but I knew that I didn't want her to continue to suffer. By this time Noah had arrived at the house, and just by his presence I felt stronger and that I was not alone. Then, by the grace of God, Magdalena came back to us. It was slow, but her daddy kept giving her a litte oxygen, and we both could tell when we were in the "safe" zone. She was so tired after this entire experience that we didn't even try to bottle feed her, but we simply gave her milk through her NG tube so that she could heal. Noah put Magdalena in one of her favorite positions, which is her laying on his chest, and she rested for a few hours. God has given us another day. I am not sure if I will be ready for the next episode and have any form of strength, but we will just have to take one day at a time.
Monday, August 25, 2008
The past few days spent with Magdalena at home are what Noah and I have desired and prayed for, and as in many situations I desire even more now. The past two weeks have been emotionally and physically hard as I spent my days in the hospital trying to be a mommy and heal too. The NICU nurses were amazing, and I believe that these women are created for their job. They were patient with me as I sat there waiting for any information that I could get for Magdalena. Even though I didn't hold her all day so that she could keep her strength, it helped me to just be there for her.
Although I do not understand and may not know how her life is being used, I know that it is beautiful and has a purpose. Throughout her time with us, no matter how long or short, I pray that God will allow us to glorify him and have fun together doing it.
Sunday, August 24, 2008
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 is unknown I find myself watching her constantly, and if one thing seems wrong I wonder if this is it....the time that I find myself dreading more each day as my love grows even stronger for her. She amazes me... My mom and sister have come to watch her so that I can shower, take a nap, or just do a few things around the house so that I don't feel bad for leaving her alone. I am hoping that if God should grant me more time with her that I will gain the confidence to trust others with her, but for now she is my little bundle of joy to pour my time into.
Please pray for Magdalena's strength to increase and that her life her on earth will be enjoyable. She has had a few apnea spells while at home. Usually she struggles to bring her heart rate back up when she is going to the bathroom or in a deep sleep. It is always so scary, but she so far has pulled herself out from her spells.
Because we are uncertain of the number of days that we have with Magdalena, the church graciously fit us in the service so that we could baptize Magdalena today. It was our first day as parents to get ourselves and her ready without anyone leaving, and we fed her before leaving home. Magdalena's family along with her mommy and daddy were so happy to have been able to celebrate such a glorious day with her. On the previous post Lori figured out how to create a slide show with the pictures from the Baptism. (Thanks, Loli!)
Thursday, August 21, 2008
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 her up and rubbed her harder, but her oxygen levels and heartrate kept going down to dangerous levels. I really began thinking that this was it. This was the time in her life that I had dreaded. She looked as though she was a complete shade of blue. Everything else happened so quickly, but basically Noah called the NICU. Before I knew it the nurses were here giving her a little oxygen and getting her lungs and heart going strong again, as I sat on the couch crying and watching it all happen. She started breathing on her own, but the nurses decided to leave her on the oxygen for the night, and Noah and I agreed that would be good. Then, she became fussy to a point that Noah and I knew that something was wrong. After talking through it, we decided that she must be constipated which had caused her to drop in her oxygen level as she had to push so hard. This got her to the point where she was unable to recover her level because of her apnea.
While this was a great reminder to us of how fragile Magdalena is, we are so thankful that we get to keep spending time with her.
We are Going Home
Tomorrow morning we will be taking Magdalena home for the first time in her little life. We are so excited to be able to take her to her own room, but we are also a bit nervous about what will happen there. We know that God is sovereign, good and faithful to us, but we need the faith to trust Him fully. Please pray for us that we will be ready for whatever is to come!
We are also very excited that this Sunday, August 24, Magdalena is going to be baptized. Please come and celebrate with us! While we are eager for this day, we will also need to be careful with Magdalena. Although we would like to share our precious miracle with everyone, please forgive us for being overly protective of her. It may not be best for everyone to meet her just yet.
Thank you so much for all of your prayers that have sustained us through these very trying times. Your prayers are God-honoring and we are so blessed by them. Dr. L, one of my professors, asked me about Magdalena yesterday and then said, "That little girl has mobilized more prayer from people all over the world than any of the rest of us ever could have." He is so right! What an amazing blessing she has been. May God be glorified in her!
Tuesday, August 19, 2008
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 nurse who has been teaching us, and after checking her diaper we realized that she was just making a big present for her daddy!
Tomorrow is a big day for Noah and I as we have to have many emotional discussions that will remind us that our daughter is sick, and we will be learning more technological things associated with caring for her. Thank you so much for all of your prayers!
When looking at her I am shown what a blessing it is to be a parent, and that she is a gift from God made especially for us.
Monday, August 18, 2008
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 proud of her fighting so hard!
Saturday, August 16, 2008
Uncle Adam and Magdalena
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
Thursday, August 14, 2008
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 Magdalena. Magdalena kept her eyes open for a long time and seemed to visually engage people and respond a good bit to Julie. This is so encouraging! Also, she ate more than she ever has before (about 28 cc's) and is digesting so well.
We are so thankful for all of the people that have done so much to help us in this time. Today, Mrs. P drove Julie to the hospital from home and has offered to do this on a regular basis when needed. Several other people have offered similar help and it is wonderfully overwhelming to have such great support from friends and family. Also, many of you have offered to provide meals for us which will certainly be eaten and fully appreciated by us. Thank you so much, Mrs. D, for the lasagna, green beans, salad and cake tonight. It was all delicious!
We are so thankful for another very good day with Magdalena. God is certainly answering prayers. Thank you for so faithfully praying for Madgalena and for us. God has met our needs every step of the way and has shown us over and over that His mercies are new every morning and that He is our true strength and source of joy, even in hard times. We also want to thank all of you for reading the blog and leaving so many wonderful comments. I have teared up several times reading through the comments when seeing how encouraging and thoughtful so many of you are. You are more of a blessing than you will probably ever know.
We know that every second of Magdalena's life with us is simply to glorify God. Our prayer is that we will know Him better and love Him more because of her, and that you will do the same. Magdalena's life is a great reminder that all of us are fragile and none of us has been promised tomorrow. May we glorify and enjoy Him today as we savor every precious moment with Magdalena.
Wednesday, August 13, 2008
How great is our God!!!
Tuesday, August 12, 2008
-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 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 later in the week. Their goal is to have her bottle feeding more regularly before she goes home. She is still having a little trouble with the bottle and the apnea is still present.
More to come later!!
Monday, August 11, 2008
Sunday, August 10, 2008
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.
Getting her handprint
Saturday, August 09, 2008
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 Magdalena - I'm sure it will be extremely difficult. It's amazing how God gives mothers an unconditional love for our children immediately after they are born.
A Priceless Gift:
Yesterday was Magdalena's 3rd day to be with us. So, on the way to the hospital my girls and I stopped by the store and got Magdalena a tiny cake with a "3" on it to celebrate her being with us for 3 days. Julie and Noah were so excited when I showed them the cake and Julie wanted to take it down there to her immediately. So, Julie and I went in to give it to Magdalena (and take pictures) and Mimi, Caroline, Uncle Stephen, and Emma stood at the window to watch. For those of you that don't know, NICU has a few rules. 1) Only two visitors at a time. 2) Unless a sibling, no child under 13 allowed. As we are taking the pictures of Magdalena with her cake, Magdalena's nurse for the day asked if we wanted to let the girls come back and sing "Happy Birthday" to Magdalena! Julie's eyes and my eyes immediately welled up with tears as we realized that this was such an unexpected surprise and a precious gift. So, we all gathered around Magdalena and sang Happy Birthday to her in our whisper voices as all the nurses took pictures and videoed it for us! It was such a special moment that we will all remember - Thank you so much Wren, Samantha, Stephanie, and Cindy for making a special memory for us!
Two of Magdalena's cousins (and biggest fans) meeting
her up close and personal for the first time!
Magdalena at the end of her 3rd day with us
There is an organization called "Now I Lay Me Down To Sleep" ( http://nowilaymedowntosleep.org/start.php) that has professional photographers volunteer their own time to take newborn pictures for people in the same type of situation as Julie, Noah, and Magdalena. The photographers do not charge anything for their services but come, take the pictures, and then give the parents a cd with all of the pictures. Andrea is the amazing photographer that was assigned to the Roberts family. She drove up in July and took prenatal pictures of Julie, Noah, Magdalena and the family. She was at the hospital on the day Magdalena was born and also drove up today to take pictures. She has been so patient with everyone and has given up so much of her time. It will be a few weeks before she has all the pictures together and on her website, but I did snap one picture of my own today to give you a sneek peak! Andrea defintely deserves a plug on this blog and I hope if you are in her area, you will give her your business! She is worth it! Thank you so much Andrea for everything!
Friday, August 08, 2008
-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!
Thursday, August 07, 2008
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 attempted to drink from her bottle at each feeding.
5. Magdalena doesn't have the hole in her heart that they thought was there.
6. Julie and Noah were able to stay in the NICU alot today to spend precious time with Magdalena!!!
7. At her 8:00 feeding she drank between 11 and 13 cc's.
8. SHE IS COMPLETELY OFF OF ALL BREATHING DEVICES (This happened after I left tonight!)
God is an amazing God and His blessings have continued to multiply with Magdalena. It's so wonderful to watch Julie hold her, rock her, and to just be a mother.
So, we ask that you specifically pray for the following:
1. Magdalena continues to breathe like she is suppose to without any devices.
2. Magdalena will continue to drink from her bottle - specifically that the nurses will be able to find some smaller nipples for the bottles. Magdalena's mouth is so tiny that we believe that is the hardest part of the bottle for her.
3. Julie and Noah will find peaceful rest.
4. Julie and Noah will continue to enjoy this time they have with Magdalena - most of it privately.
5. The doctors and nurses will continue doing such an outstanding job taking care of my girls.
6. Julie will be in the least amount of pain as possible.
This is from the 5:00pm feeding, not her first feeding - but it
is still an answered prayer!
A beautiful family photo
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!!!
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.
- 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!
Wednesday, August 06, 2008
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. While we would have loved to announce that the test was wrong, that does not seem to be in God's plan. He has chosen to show a huge amount of determination in one little bundle of joy. As I looked at Magdalena this afternoon and held her hand, I wondered how any person could ever give up on their child. Magdalena was created by God...and in His image! She is just as beautiful as her name is and I thank God Julie and Noah never gave up on her.
We appreciate your prayers so much. As you pray today, please pray that:
1. Magdalena will get off her C-PAP, try the bottle and be able to suck successfully soon.
2. Julie and Noah will continue to be able to hold her on a consistent basis.
3. She will be able to go home soon.
Below I have picked out some of my favorite pictures from the day. Everyone had already left the hospital when Julie and Noah found out they were able to hold Magdalena, so those pictures will be updated later.
Opening her eyes the first time