The Peace (that Passes Understanding) Lily

This peace lily sits in the nursery and has sat in there since we had the boys. It was a gift at their funeral, we have several others around the house. None of them have bloomed for years, three years to be exact. This one bloomed today. When I noticed it I had chills cover my whole body, and then I felt peace. I felt Joshua and Caleb smiling down on our family. I know that is cheesy and corny and I don't care, it is what I felt. How ironic that it would bloom when we finally brought a baby home to their nursery. It is really miraculous that the plant is alive at all... I am terrible with house plants. Matt actually remembers to care for them better than I do. But peace lilies are not hard to keep around, they are very forgiving and they almost ask you to water them when you do forget. I guess that is why it has never bloomed for us. And it is probably not a coincidence that Cathie was here for three weeks to take care of the plants (and everything else) after I had Harper. I am sure that has something to do with the plant blooming this week. But none of that matters. What matters is the way it made me feel when I saw the bloom. What matters is how I instantly was reminded of my boys in heaven. And I wasn't sad at that moment. I felt peace. I felt love. I felt warm. I felt peace. Peace is a beautiful feeling. You have to let go of pain and suffering in order to feel peace. You have to stop being angry and hurt to feel peace. Peace is a gift from God that is always right there, but we have to let go in order to feel it. We used to sing in VBS "I've got the peace that passes understanding, down in my heart. Where? Down in my heart. Where... Down in my heart to stay!" And I have felt that peace before. I never understood that song when I was a child, and I always asked my mom and my grandpa what it meant. They tried to explain it and I just couldn't understand, no matter how many times they explained it. The thing with peace is that you have to be still and quiet and let God BE. Just let God BE. And for a control freak like me, that is so hard. But He has been trying to teach me how to do that for years now, and I have gotten it before - like the "light bulb" came on. But then I would lose it with fear, doubt, guilt, and worry. I have a hard time just letting God Be. With Harper I have had no choice. There was nothing I could do to help her from the very beginning. But God gave us Children's Hospital, and the staff, doctors, nurses there, plus all of my doctors and nurses that cared for me and performed the delivery and surgeries. And He gave me the lesson of letting go and letting God Be. And even better, I learned it. Now I am not saying I won't forget and pick it all back up, but for now I am letting God give me the gift of peace. And that peace lily made me realize it. I am so thankful to have Harper home and for us to all be together. I love seeing Billie with Harper. She is so sweet and so happy to be with her sister. It is so beautiful. I am so amazed with how she looks at Harper; the love you can see in her eyes for her sister. That is also a gift from God. God has blessed me beyond my prayers, and I am so thankful.
Harper is settling in and doing good. She went to her pediatrician today and she didn't gain or lose weight...she is still 4 lbs 14 oz. We will take her back Friday to get her weight checked again. She gets her eyes checked tomorrow. She is eating good and sleeping good and just getting used to us and home. We are all enjoying her so much. It is so nice to hear her sweet grunts - she grunts a lot! I love all the sweet noises she makes, even her cry. She is easily consoled, too. It feels so good to be able to fix what ever is the matter for her. She doesn't cry much, though, at all! She is such a good baby. It is hard for us to put her down to sleep, we want to cuddle with her so much, but we want her to grow and she needs to sleep sound to grow.
Update on Milly...she is home. Jenny said she did good her first night. She only woke up twice to eat and then went right back to sleep. They are waiting for results from a culture on fluid from her incision. Prayers are needed that it is not infection. Milly will have a lot of follow-up visits, but praise God she is home!
Addison is doing good. It was so sad to be leaving her and her sweet parents at the NICU while Harper and Milly both got to go home. But Addison is quite a bit younger and she will get her day! She has started to nurse a little which is exciting. They are working on getting her to gain weight. She still has the brain bleed and prayers are still needed for that to resolve. She also has stage 1 ROP. She will have an eye check tomorrow and I will pass on the news. Addie and her parents need a break. They have had to deal with way too much. It's time for some smooth sailing for that sweet family!
Thank you for your love and prayers! We love and appreciate you so much!

There's No Place Like HOME

This was after we laid her down for a nap...Billie pulled a chair over to her bedside and Matt and Blue joined her. I am afraid she isn't going to get any attention!
Billie and Harper together at last! This is the FIRST time Billie ever touched Harper or even got to see her without glass separating them!It was a beautiful moment. Billie is so in love with her sister. Billie sat down and read her a book first thing, and Harper just watched Billie. My heart is so filled up it might burst!
This was at 3am. Harper didn't seem to like being in her cradle much. She kept grunting or even crying until we picked her up. We fed her a few times, but she didn't eat much and if I swaddled her, she went right to sleep and was happy as could be. Harper doesn't cry much, usually, but she grunts all of the time! So cute!
Her first car ride! She loved it. Was very happy the whole way home. She fell asleep not long into it. For those who have not heard...things did change fast yesterday! Not long after I blogged, I got a call from Kary (one of our primary nurses at the NICU.) She said they were giving us the choice to room in or not, and if we were OK not rooming in, then we could go home TODAY! So I called Matt who had actually gone to Johnson City to play golf for his 20th High School Reunion. He and I both felt confident with our abilities to take care of her without rooming in first, so we opted to bring her home yesterday! Billie was actually in Johnson City with her grandparents and cousin Chandler playing on the lake, so Matt swung by there and picked her up. She was so excited! We left the hospital around 6 pm. Billie held her first when we got her home. I have a video of it that I will post later. Harper got hungry not long after that, so I fed her and then put her down for a nap. Billie pulled a chair up to the pac 'n play and just watched her sister sleep. It was just precious. Then later we were eating dinner together, and she said "I feel like this is all a dream and I am going to wake up and none of it will be true." She also read her sister a book - which she said she had been waiting to do forever. She already had a book picked out that she wanted to read to her - "Angelina Ballerina." As Billie read, I fed Harper a bottle and Harper kept her eyes locked on Billie the whole time. It was so sweet. They are going to be so close. I am so thankful to God for this amazingly perfect day! My family is all here together under one roof and it was beautiful! And we get to do it all over again today! It was bitter sweet leaving our family at the NICU. We had two primaries there to send us off, Betty and Kary. I cried as soon as we started the walk out of the NICU - it dawned on me that I would never be in that room again after spending 3 straight months there! As much as I wanted to be home with Harper, I fell in love with so many people there. As we made our turn away from our little corner and towards the door leading out, we could see down the long side of the NICU and all of the nurses looked up and waved at us and said "Good Bye!" It just warmed my heart and broke it all at the same time. When we got to the car, Matt and I didn't have the car seat in right, of course! The same thing happened when I took Billie home, LOL! But Kary helped us get it right. Then we hugged and said our good byes and then we were off! I will never be able to thank all of the people that had a part in Harper's miraculous recovery. God was in control, and He put them in Harper's life to care for her and help her get to this point. I will miss them so much, and I am sure Harper will, too. We will go back for visits, but it will not be the same. I just can't put it into words the love I have for them and the gratitude I feel for them. Praise God, He is good! And we are healthy, happy and HOME!

Big News...

This was taken yesterday just after breakfast...she has learned to love her meals! One of the nurse practitioners, Kathy, said the day before if we don't remove the NG tube, we will just keep using it and she was so right! We took it out and since then Harper has been eating all of her meals with no problem. And it is because of this that they think we may go home early next week! We don't have discharge orders yet, but we are so close I can taste it! Her eyes were still stable on Tuesday, and she will have them checked again this Tuesday. We have to room-in with her, which is where we stay there in a room at the hospital with her over night and take care of her all by ourselves. She needs to not lose weight that night in order to be discharged. She also has complete a car seat challenge, where she has to sit in the car seat for 90 minutes without dropping her heart rate. I can't believe we are this close finally!
Milly is getting ready to go home, too. They are rooming in tonight and the plan is to discharge tomorrow! I am so happy for them. I actually got to hold sweet Milly yesterday. She is only 2 pounds bigger than Harper, but she felt so much bigger! She is so sweet and cute. It is amazing how different Milly and Harper look from each other, but they are both just a precious and cute as the other!
Addison is doing good, too. She is struggling to gain weight right now so they are working on that. They had to do another ventricular tap, and that set her back for a few days. It helps her, of course, but it also makes her feel very bad. My prayer for her is that the bleed starts resolving on it's own and she starts to gain weight again.
It is going to be bitter sweet leaving the NICU. We long to be home so bad...have both Billie and Harper under the same roof and just be a family together again. But we have also fallen in love with the nurses and staff at Children's. They are the most caring and brilliant people you will ever encounter in your life. I hope no one ever has to be there, but once you are there you are changed for life. Thank God we have such a wonderful hospital for our children right here in Knoxville. We owe our miracle Harper to them, and will never be able to repay them. But they do the same for everyone because they care about children so much. We weren't special, although the made us feel that way. They treat every child with the same love and care that they showed to Harper Grace. Thank you so much to everyone at Children's, although I know thank you will never be enough. There really are no words to adequately express our gratitude to you all. We fell in love with all of you!
I will try to keep you updated, but know things change quickly and I have a lot to do to get ready at home for Harper! Thank you all for your love and prayers, I know they are also a big reason for Harper's amazing progress, too!

Happy 3rd Birthday Joshua and Caleb!

Harper is getting in on the celebration today with her very own T-shirt to honor her big brother's memory! Joshua and Caleb are 3 years old today. I made Harper this onsie yesterday and it felt good to do something for my sweet miracle daughter and honor my miracle twin boys at the same time. Today we are planning on taking balloons to the cemetery. I got a very cute and very large Curious George balloon and a cupcake balloon. During my surgery with the boys our anesthesiologist, Roger, played the Jack Johnson soundtrack from the movie Curious George. When I hear Jack Johnson's voice, I immediately go back to that day and the minute Dr. Bruner held the boys up over the curtain to show me my miracle twin boys. Then they were whisked away to the next room with the team from Children's including Dr. Howick, Yevonne, Dawn, Tracey and several other sweet angels that spent an hour loving and caring for our boys. We have heard the stories from some of those that were there that day. I love hearing from them and knowing the little details of my boy's short life, especially the part of it that I was not there for. Joshua and Caleb made such an impact on everyone that came into contact with them, and even those that only heard about them. It was truly marvelous and miraculous to hear about how they touched people. I am so proud of my boys and what they did for me and for others. I still wish I could hold them and kiss them, play with them and tuck them into bed at night, but I know they are perfect in Heaven and that is exactly where they are supposed to be. To be in the presence of Jesus is ultimately what I want for all of my children, and my boys just got to be there now. Today I will feel a little sorry for myself and miss them a little more, but I will also remind myself of how happy they are in the arms of the Lord and how blessed I am to have two miraculous daughters to hold here and two miracle twin boys watching over us. It is hard to believe it has been three long years since I held them, but it is also hard to believe it has only been three years since I held them. If I close my eyes, usually I can picture them in my arms, but it gets harder to remember how they felt in my arms as time goes by. I still long to kiss their sweet heads and hold them close. I would have given anything for them to just survive, but I know how hard their lives would have been. No one wants that for their children. As I have said before, I wonder if they are separated in Heaven or still conjoined. Sometimes I wonder if they are both - together when they want to be, and separate when they want to be. One day I will know and I will hold them and kiss them and never let them go again. Until then, I will take solace that they are in the arms of Jesus and He loves them much more than I ever could. Happy Birthday Joshua and Caleb, we miss you and love you...

ROP is STABLE

Haper looking at her mobile
Harper looking at her Mommy!

I apologize for this post being so late. I actually wrote a update yesterday via my phone 3 times, but something was wrong with the app and it kept getting lost. Very frustrating. But good news, her ROP is stable! We are so excited. I don't even think she will need surgery now, but we will still wait and check her eyes again next week. There is a slight chance she will still need it, but it gets less and less with each week that her eyes don't get worse. We are so happy. Now the only thing standing between us and bringing her home is her ability to eat all of her meals herself without the need for NG tube feeding assistance. We are working on it. She is learning every day and improving every day. She is just so young and so little, she still shouldn't be born for another 4 weeks! She weighs 4 lbs 10.5 oz, and is 36 weeks (or 11 weeks old). Actually, this is the week they would have done a amniocentesis to see if her lungs were developed and if they were they would have delivered this week via c-section. The doctors were concerned if I went into labor that I might have a uterine rupture...guess they were right in being concerned they just didn't know it would happen at 24 weeks. God had His own plans!
Milly is doing very good. She is off the vent and is feeding now. Jenny (her mom) and I think they may get discharged around the same time. Addison is doing good, too. She had a ventricular tap this morning and Rachel said it went good. We will see if it makes her feel better today. My prayer is that her parents will see big improvements and her bleed will resolve now, without the need for another tap or a shunt.
I read something on a friends Facebook status that I haven't been able to get off my mind, especially this week. She recently lost one of her 6 month old triplet boys, Owen. In my memory, it repeats like this, though: "God, I was planning on holding my boys in my lap and teaching them about you. Will you hold them on your lap and teach them about us?" Friday is Joshua and Caleb's third birthday. I can't believe it has been three years since I kissed their sweet heads and cradled them in my arms. I wonder what they look like, what toys they like to play with, what they like to eat. Of course I still wonder if they are conjoined or separated in heaven. What we have been through in just three years! I can't let myself think about that, now, though. My daughters need me to be strong. I have two miraculous daughters and I am blessed beyond measure. I still miss my sweet miracle twin boys, though. Nothing can replace them, and nothing will make me stop missing them. Even though now I am busy with a 10year old and a preemie! So on Friday I will allow myself to miss them wholeheartedly, to wallow in my heart ache a little. And then on Saturday I will go back to concentrating on my wonderful and miraculous daughters. TWO DAUGHTERS - blessings beyond my wildest dreams.

Echo and ROP update

Harper had an echo on her heart last week. Her PDA is totally closed! They found a murmur and it is called ASD and is a small hole that is not causing her trouble now but if it does can be corrected with surgery. She also has a PFO, which is very common and shouldn't cause her any problems. I will update in more detail on these two heart defects later but for now she will just see a cardiologist every 6 months. Her eye exam is tomorrow so we are prayerful and hopeful we will see some regression. She is improving on her bottle and breastfeeding, too. It is a lot of work for one so little, but she is learning and doing better every day! I will update again tomorrow after her eye exam. Thanks and love to all!

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Bottle feeding and talk of HOME

Today was a big day for all of us! Harper had her first bottle today. She did pretty good; they give them a score of 1 to 3 and she only got a 1, but she tried really hard! Matt gave her the first bottle. I am still nursing her three times a day, so I also fed her three times today and after she nursed, I tried the bottle, too. So needless to say, she was worn out and lost a little weight today. It will take time, but she will get it. We were told yesterday that once she does good at eating and if her eyes are OK on Tuesday, we can bring her home! Isn't that amazing? I couldn't even believe it, still can't! It could be as early as this time next week! We are a little scared, but mostly just over joyed! Harper did have several brady episodes today while eating, so she will have to really improve her feeding before she is discharged. I spent about 9 hours there today, I just couldn't bring myself to leave. But I am paying for it now because I am exhausted.
Baby Addison came off her vent today, and went straight to a cannula! We are so excited for her! Baby "m", who is actually baby Milly (her parents, Jenny and Teddy gave me permission to put her name here) is doing good. She is still on a vent and they will be doing a procedure tomorrow to be able to give her nutrition support and then hopefully she will be off the vent sometime tomorrow.
I will keep you updated as soon as I can! Thank you for your continued prayers!