So, this last week we had a little set back. Natalie was still producing a lot of fluid out of her chest tube so they had to take her feedings away again and just give her TPN, nutrients that she needs through her IV. The only thing is that she knows what a full tummy feels like. It was so sad she would cry and go to town on her binky. Good thing she loves her binky. But it still didn't make it easy seeing her get so upset because she wanted to eat. They wanted to try and "dry her out" to hopefully get her body to stop producing so much fluid.
Well, that seemed to be the fix. Today they took out her chest tube!!! The chest tube was coming out on its own so they decided to pull it out. She has been so happy with it out and eating everything she needs to from the bottle. So, we might not need to take her home on a feeding tube!That would be such a relief for me. The feeding part wouldn't be the hard part. It would be my two year old and the little busy body he is, I would be afraid he would pull it out or something horrible like that.
So, they will continue doing a chest x-ray everyday to watch for any fluid build up. And if there isn't we could be going home this week. I know I have said this before but hopefully this will be the week. It seems like we are on a roller coaster ride. We will be doing so well one day and not the next. So it is hard to get too excited about going home. But I want to thank everyone again for all that you do for my family and I. It is really neat to know that so many people care.
Well, things seem to be getting better every day. Natalie still has her chest tube, but we are working on getting her feeding again. They say after babies have heart surgery they have a difficult time with feedings. So right now she is eating every 3 hours and trying to eat from the bottle every other feeding. The other feedings they give her through the feeding tube. Which we might have to go home doing. I really would rather have her eating everything from the bottle, but they say that may take weeks to get to that point. And her little body can't handle too much with all that she has been through these last few weeks. Eating takes a lot out of these little ones so we have to do things slowly.
Another good thing is that Natalie is awake a lot more. Before her surgery she was always so sleepy because her little heart was beating so hard that it made her very fatigue. But now it is so fun because when I go to the hospital she always is bright eyed and will be awake for hours. She also loves to be held. I am still pumping even though she has to be on a fat free formula for another 4weeks to help her not accumulate more fluid around her lungs. So when I need to pump I put her back in her bed and she will just cry until I pick her up again. And her little cry is music to my ears. With this heart surgery there was a risk that it could paralyze her vocal cords. And how we know with our little Clint that is not a fun thing to deal with. Before she went into surgery I made sure the surgeon knew how nerves I was for that and I prayed with all my heart that it wouldn't happen. I know Natalie will have a lot of things she will have to overcome and I didn't want a paralyzed vocal to be another. So when they took out her breathing tube she really didn't have a cry. But after a few days I went to the hospital and I heard a baby crying and it was my baby. I can't tell you how wonderful that cry was for me to hear. And her cry is the cutest thing ever!
So they say once they pull the chest tube out they will wait 1-2 days and make sure no other fluid has accumulated and if not we could be going home!! Oh, what wonderful words to hear. It has been really hard for us to be apart. Mason has been up in Logan and comes down for the weekends. And the kids and I have been living at my moms so I could be closer. So it will be so nice to be able to all be under one roof again. And to hold my baby as much as I want.
But I have to say we have been very blessed. We have such an amazing family and friends that have helped us out so much. We couldn't do it with out all of you and all your prays. Natalie is such a blessing to us. She is a miracle, despite all the statistics and what all the doctors were saying she made it and is still proving that she is a little fighter and she won't give up. Oh how this little one has changed my view on everything. She is such a sweet little baby and I feel very blessed to have her in my life. Even though at times I feel I am very inadequate to be her mother, I feel so grateful the Lord has entrusted me with such a special little spirit. And hope and pray I can be the mother I need to be to help her through her life. I want you all to know we feel your prayers, I know that is why Natalie is here with us today and that is how we make it through each day.
Monday, July 19, 2010
A week later I was finally able to hold my baby. I was so excited, I didn't think to let Mason hold her. We only had an hour before we had to leave. But Mason said he was enjoying watching me hold her than making me give her up.
This is a couple of days after her first surgery. She had two chest tubes and some many other lines coming out of her they wouldn't let me hold her. It was so hard not to hold my baby after all she had been through.
This is the day of surgery. And Mason is holding her for the last time before they came to get her.
This is one of my favorite pictures. She was so wide awake.
This is when we thought we were going home. They do a car seat test for an hour to make sure the babies stats don't drop.
In an effort to help where we can these posts will be a combined effort of all of Tara's sisters.
Monday, June 21st 2010 Tara's water broke at around 2:00 in the morning. They had to make it to either McKay Dee Hospital or University, but she barely made it to Logan Hospital last time when Clint was born. They hurried to the car and Mason going at high rates of speed made it to McKay Dee where Tara delivered shortly after. She made it in time to get an epidural (which was done very quickly) and then they wheeled her off to the OR to deliver and prepare for this special delivery. But before they wheeled her out, Casey got there to help Mason give her a priesthood blessing. It was a beautiful blessing, Tara was told "to be calm and relaxed, that she would soon see the face of her baby and that MIRACLES happen every day." I got the chills and cried. It was a beautiful blessing before she went to deliver this sweet spirit. Heidi, my mom and Emily were out in the waiting room patiently waiting for any news. About a half hour after they took her back the doors opened and they were taking Tara back to her room. We hurried back to her room and found out that Baby Natalie had been born and was doing amazing! Tara even got to hold her and love her for a few moments before they took her away to do assessments on this little one. Natalie was born with Turner's Syndrome, something that they knew before delivering her. They didn't know how things would go, they were given the worst case scenarios before going in and came out with the best! Her little heart is pumping so well and has no problems like the doctors thought she would. The worst thing she is dealing with right now is edema. Her little hands and feet are so swollen that it looks so painful. Natalie is in the NICU right now being taken care of so wonderfully by the nurses. Tara is so happy and excited that Natalie doesn't even have to be on any O2, she is on Room Air which is amazing all in its self. They want Natalie eating on her own before she can go home, but she might even be able to go home in a week if she cooperates. Tara is sore but doing so well. I am so proud of my sister and all that she has been through. She didn't even know if she would have a baby to hold in the end and got the best thing ever, a healthy baby girl! We love her so much! Tara's last baby, Clint was born at 27 weeks and this time Tara did really well, Natalie made it almost 36 weeks. She was born exactly a month early. We know that Tara went into labor early in the morning so that roads would be clear of other cars and so they could make it in time to the right hospital. Everyone there did such an amazing job!
Natalie Ann Stevens 5 lbs. 7 oz. 17 inches long
Natalie was flown to Primary Children's 6/23/2010 because they found a problem with her heart, a narrowing with her aortic valve. This is common with Turner's Syndrome but not always a good thing. We wanted her down at Primary's anyway because they have dealt with this type of abnormality before and are more aware of her needs right now. If anyone is reading this, please say a prayer for Baby Natalie and for her family as well. They could use all the extra help only our Heavenly Father can give at this time. She is such a sweet little baby and we pray everything goes all right.
Today Natalie has been doing really good they put her on some medicine to help open her heart valve and she might not even have to have the heart surgery. I'll keep everyone posted when I find out more!
Natalie was taken down to Primary Children's Hospital on Wednesday the 23. As soon as she arrived the Doctors decided it would be best to perform an echo cardiogram on baby Natalie again. Tara and I patiently waited in the waiting room while they did this test on her. The Technician came out of the room and was leaving the NICU as she passed us in the waiting room. She stopped to tell Tara that they had GREAT news. They performed the echo and it looks like nothing to serious is wrong with her heart. She has a little narrowing but not enough that they would have to do surgery at that time. Tara couldn't believe the news that came out of the technician's mouth. Tara had the worst news earlier that morning and the best news later on that day. Tara has been through so many ups and downs and yet still is so strong. I look up to her everyday and I'm so amazed how strong she is. Natalie is now doing well. She just has to be able to eat and stay away from infection and they will let her go home with her family. As of today Natalie is up to full feeds and they are taking her central line out tomorrow. They will perform another echo cardiogram later on this week to make sure her heart continues to do well. So we are praying that everything will continue to get better and that she will be able to go home soon and that Tara and Mason will be able to enjoy their precious little angle. Natalie is a living miracle and has already blessed all of our lives. We love her so much and are excited to have such a special spirit in our family. We love you Tara and Mason and Baby Natalie. Your in our prayers."
Natalie Ann Stevens was doing so good a week and half ago they thought she was going to be coming home, well I think it was that night that her heart started going into failure they were taking her blood pressure every hour to watch her. Her heart wasn't doing very well so they ended up putting her on some medicine to help her heart so it wouldn't have to work so hard....It was working but they did more echos on her heart and found out that she was going to have to have heart surgery and wanted to wait until Monday (July 12) to do it so the medicine could help her heart. The medicine was making Natalie really sick like the flu but it was helping her heart. The night before she had the surgery they ended up doing a blood transfusion and that seemed to help her. She needed that! Monday came and they had her planned to go in at around 11:00am then it was pushed back until 3:30pm and they said it was going to take about three hours for the surgery....The surgery went well and she did really good! But right now she has fluid on her lungs and they are draining about 6oz or more a day and they are trying to get the fluid to go away so that the muscles can reattach to her lungs and the cavity walls. The last few days she hasn't been doing good her heart rate has been really high. Today the surgeon came in and looked at her and took her back into surgery right away because one side of her lungs were full of fluid. There was just so much of it that her heart was beating to hard and couldn't keep up. Her lymphatic system doesn't work right(that's part of the turners)and it was leaking and filling up one of her lungs. The Doctor said when he went in the fluid was like jello and that is why it wasn't draining right. He also found that there was a nick on a lymphatic duct due to the surgery and that is why she was leaking so much fluid. So he patched it up and sprayed some glue on the lung so it would reattach to the chest wall. We are hoping that it stays. And they also put a larger chest tube in to see if that helps drain better. She also got more blood today and whenever she gets more blood her heart does so much better! So as of right now Natalie's heart rate is better than it has ever been!!!! Please remember our sweet little angel in your prayers as well as her family. They could use all the help they can get from our Heavenly Father right now. She is such a sweet little baby and we pray everything goes all right.
