Monday, July 25, 2011

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!

Sunday, July 24, 2011

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!

Saturday, July 23, 2011

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!

Friday, July 15, 2011

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...

Wednesday, July 13, 2011


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.

Monday, July 11, 2011

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!

Posted from Blogium for iPhone

Thursday, July 7, 2011

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!

Tuesday, July 5, 2011

ROP update

Great news on Harper's ROP... No change from last week. So while it didn't regress as we were hoping, it didn't progress further, either! The doctor said we will just check them again next Tuesday. More waiting, but that's ok! Waiting is much better than sending her into surgery.
Baby "M" did great for her surgery. She was resting when I left. And they moved her right next to Harper so our friends are our neighbors now! Very nice. Now we just have to get Addison moved to our corner and we will be all set! I promise to try to remember to ask Baby "M's" parents if it is ok to put names on the blog, I just forget until I am leaving the hospital or blogging!
Nursing isn't going so good. I have plenty of milk, Harper just doesn't get much when we nurse. So we are going to try a bottle on Thursday. I hate to, but if she doesn't eat she can't come home and that is mostly what is keeping her there now. I'm not giving up, though. I will still try to breastfeed her at each sitting and then supplement with the bottle. And she will still get breast milk even in the bottle. If I have to pump forever I will, but that is not what I want. I think once she gets bigger and stronger it will get easier for her to nurse. Besides, I have a whole deep freezer full of milk, we might as well use it! Thank you again for your prayers, but don't stop now! We still need prayers for Harper's precious eyes and prayers for nursing. It does make me sad that nursing isn't going well and it is a source of stress for me.

Posted from Blogium for iPhone

ROP... Week 3

Today is a big day for Harper and for us...she has her eyes checked again to see if the ROP has progressed, regressed, or stayed the same. Our prayer is that God continues to hold Harper in His care. That what unfolds today is part of His plan. We also pray that He hold the doctor in His care and that what the doctor decides about Harper and her eyes is what is best for Harper and God's will for Harper. The doctor should come around lunch time and I will let you know as soon as I can. Please also keep Baby "M" in your prayers today as she has surgery, as well as her sweet parents as they wait for her. Thank you for always being willing to love us and pray for us.

Posted from Blogium for iPhone

Sunday, July 3, 2011

Happy 4th of July!

Harper is ready for the Fourth of July! Her crib is all decked out with red, white and blue blankets and she has on a cute outfit and a pretty blue bow in her hair! All thanks to Kary, Jennifer, and Ashleigh (and Daddy who dressed her tonight). She is doing so good. She weighs 4 lbs 1.4 oz! Woohoo....4 pounds! I can hardly believe it, but I am so thankful to God for it! Her feedings have been increased to 40 mL, and she is improving with her nursing, which we do 3 times day. She is getting some milk every time, although sometimes it is only 2 mL. She does brady sometimes still, but not every time so that is getting better, too. She is doing good keeping her temp up on her own, so as soon as they have a regular crib for her she will graduate out of the isolette. They expect to have one tomorrow after a baby is discharged. Tuesday is still a big day for her with her eye exam happening. We are praying for regression, but will try to be prepared for what ever happens. Also on Tuesday Baby "M" will be having her surgery, so please be in prayer for her that everything goes smoothly. Baby Addison is doing great tonight, too! Her vent levels were much lower today and it is so uplifting to see her keep having good days! Her sweet parents made Harper some bows for her hair and bought her a really cute shirt, too. I will put a pic up of Harper in it when she wears it. All three girls will have matching bows! We plan on taking a picture of the girls together every year around their birthdays (we will have to pick one day in the middle since they are all a few weeks apart) so we will need to have matching outfits for them every year! Can't wait for the first picture of the three of them together...wonder if we will get one in the NICU before the first one gets discharged. Maybe we need to take one now of the mommies together to post here...then we can look back years from now and be thankful we aren't so stressed out anymore, lol! Thank you, Rachel and Phillip for the bows and shirt! I hope everyone enjoys the 4th tomorrow, be safe and have fun!

Saturday, July 2, 2011

Harper is 10 weeks old today!

Harper is growing and getting so big! She is 3 lbs 14.5 oz...almost 4 lbs!! I am sure she will be 4 lbs sometime over the holiday weekend! They are weening her out of the isolette and into a crib, so she will now have to regulate her own temperature so she could lose a little weight keeping up with that, we will just have to see what happens. This picture is so cute, isn't it? Matt had stayed late that night so he could give her a bath. Since she really needs her sleep to grow, we can only get her out and hold her or give her a bath if it is feeding time, and since I had nursed her at 8:30 that night, we couldn't give her a bath until her next feeding time at 11:30. So I brought Billie home and Matt stayed and gave her a bath...which she LOVED! He said she gave out a little cry when he first plopped her into the bath but then she realized she liked it and settle in and enjoyed it. She needed it...we hadn't given her a bath in a while, but her nurses had cleaned her up, of course. She is up to nursing 3 times a day now, which is hard with Billie but we are making it work. We are so blessed to have a very helpful and big family to make it go pretty smooth. The doctor actually mentioned the word "home" the other day...he took Harper off of her myceline and said it was "to get her ready to go home in a few weeks!" Music to my ears. We still have to get through her eye surgery, though, but I have been day dreaming of having my entire family under one roof! How awesome that will be! I can't believe we are actually going to use our baby nursery for a baby and not just for storage of baby things we don't really need. I have a lot to do to get the house ready for Harper, and we have lots of things we need to purchase for her like a monitor, and bottles. She came so early, I never had a chance to prepare for her! Since she went off the myceline, she has had a few more bradycardia episodes...but she brings herself up quickly. We will just see how it goes. The myeceline and caffeine are to help with apnea, and the only way to see if she is ready to come off of them is to try it. There is a chance she will come home on the meds, but they want to give her every chance possible to come off of them before she comes home. I must run...I nurse Harper at 8:30! Pray it goes has been going better but she is still having brady episodes during feedings, and it still freaks me out, although not as much. I don't want to get used to them, though, I just want them to stop.
Update on baby "M"...she is doing good...they are going to run a test this week to prepare her for the reversal of her colostomy and illeostomy which is great news! I will let you know when they schedule the surgery...she and her parents need your prayers. Baby Addison is still doing great after her heart surgery...and mom got to hold her last night! It was beautiful and I am so happy for them. She will really start growing and doing good now that her heart is fixed and her mommy gets to love on her more closely! I don't have time to proof read, so please forgive any errors!!