Every Smile and Ounce Count

I am so sorry it has been so long since my last post. I totally mean to blog every day, even "write" entries in my head as I try to fall asleep, pump, or pace the floors with Harper and somehow the day gets by me and no blog has actually been completed. So to make up for it, I included a sweet video of Harper talking to me. She is all smiles whenever she wakes up, and loves to stretch her vocal chords with sweet coos. Those smiles are the most rewarding and uplifting sights to my eyes, and the sounds are the sweetest to my ears. I just have to reflect on how far Harper has come since April 23! She was so tiny and sick when she was born, and look at her now! You have to see the amazing way the Lord works when you see her talk and smile. God is so good and has been so good to me.
Yesterday when I picked Billie up from school we had to take something to Matt at work and the whole drive out there, which is about 25 minutes, she talked to Billie and smiled at her. It was the sweetest thing in the world to listen to my 10 year old talk baby talk to her sister. Billie has got to be the best big sister in the history of big sisters! She always puts Harper first - always, no questions asked, no whining, no complaining and even with a joyful heart! If I had not been driving I would have taken video of it to keep forever and to share with you, too. You will have to take my word for it, but it was a beautiful sight to behold. I would not have planned to have children ten years apart, but God is blessing me so much through this experience. Billie is so mature and amazing, but she doesn't try to mother Harper, either. We have all just put these new "hats" on in our family and they all fit superb and are so comfy, too. Billie just naturally loves her sister to pieces and appreciates the little strides Harper makes. Billie gets so excited to receive a smile or a coo from her sister, and she treasures every second she gets to spend with her, too. I just can't tell you how blessed I am to see my daughters together. They each are so strong and amazing, and the two together are just enough to make my heart completely burst with gladness.
To get to the "ounce" part of my blog title, Harper is gaining weight! Yes, it may be ounces - but put every ounce together and they add up to POUNDS! 7 pounds, 6.5 ounces, to be exact! She is doing so great! She has really taken off on eating this week, too. Just last week, 40 mL (just over 1 ounce) was an average meal for her, and this week her smallest meal is 70 mL - almost double - and her big meal of the day is 95mL (over 3 ounces!) With that big jump she isn't spitting up, either. We no longer have to force feed this sweet baby, she gobbles it up all on her own. Dr. Greg said after she hit 7 pounds everything would get better and it sure has! Since he was so right about this, and everything else so far, too, when he tells me not to worry about her hernia or if she might have CP, I am going to listen to him. Harper has such an amazing team of doctors and nurses working for her future and watching over her, I am just trying to love her and nurture her and let all of them worry about the serious stuff. I say that and I mean that this morning, but I do admit that I may have moments of weakness in the future when I worry about some of it again. But "when I am weak, then I am strong," 2 Corinthians 12:10 is always on my mind and it helps me to remember God is perfect in my weakness and He has this. All of this. He always has and He always will. God is so good that He keeps giving me more chances, too! So back to how everything has gotten better, Harper is now sleeping so good. She is still in her pac 'n play, but that is fine with us. I still put her in her crib during the day to play and try to get more used to it. I think it is just still too big for her, she likes to be in a little cocoon all snug and safe. She sleeps 4 to 6 hours at night, and I think some nights she would sleep right on through if I let her, but until she is 8 pounds we will not be letting her go that long with out a meal. Usually she goes 4 hours for the first feeding and then back to 3 hours for the rest, but last night she went a full 6 hours! She usually goes right back to sleep after she eats, too. She has has a few bad nights sprinkled in there, too, where she just doesn't want to sleep and all she wants to do is eat. I have noticed that I can predict if she will have a fussy day by the kind of night she has. If she sleeps good at night, she has a great day with lots of long naps and she eats good, too. If she is up all night, she has a terrible day needing to be held all day and eating only small, frequent meals.
She has started getting fussy every night for about an hour, usually between 5 pm and 9 pm. Sometimes it lasts up to three hours, but usually I can figure out something to fix it and it is always because she is over tired. I guess that is colic, right? Billie did the same thing and it resolved when she was three months old. Harper's corrected age is two months and she really seems like a two month old baby. The changes and strides she has made tells me she is going to be OK. I am sure she will "catch up" eventually and we will one day say "can you believe she was even a preemie?" Since she was born I have heard wonderful stories of other preemies that are now in college and are so smart and so successful and you would never know they were preemies. In fact, my own sweet cousin, Kelly Wells, is one of those preemies! I had no idea until Harper was born that Kelly was a preemie, either! Born around the same gestation as Harper, too. She spent 4 to 6 months in the NICU, and now she is a Crime Scene Investigator (CSI)! How cool is that?
Every ounce counts, and Harper is gaining 1/2 ounce to 1 ounce a day! She is just a little miracle, and I can't wait to see how the Lord uses her. We are so blessed and so happy!
To update you on Addison - she had her shunt placed this week. She has been doing pretty good, considering the seriousness of the surgery. She came off the ventilator a few days after surgery and is breathing good on her own. They are now just praying that there will not be any infection. They do have her back on NJ feeds, and Rachel said she is spitting up some. She was very swollen still from the surgery since last I heard from Rachel, but it was getting better. Her eyes remained stable, but she does have Stage 3 ROP with a little Plus disease in one eye, so she remains at risk for eye surgery. Please continue to pray for this sweet family. They have been through so much and have a long road ahead of them. The shunt surgery was a big step on the road home, though. The shunt is permanent and will require additional surgeries as she grows and will always be at risk for infection or failure.
Milly is doing really good! She is over 11 pounds now! We will get to see them on Halloween when both girls have a doctor appointment at the same office. I can't wait to see them. I made such sweet, life-long friends in the NICU. I am so thankful for Rachel and Jenny and that our girls will all have each other.
We have big things happening this month so I will try to update more often. Until then, thank you for your continued love and support!

Happy 1st Day of Fall

My Great Grandma holding me(1973). I knew Harper looked like me, but I really didn't know how much until my mom brought me these pictures. Amazing!

Me at about 4 months old, I think (1973). Harper even has my smile!

Harper just relaxing with me on the couch and I snapped a couple shots.

Harper "cooing" - she loves to talk to me especially when she first wakes up. I LOVE listening to her and watching her sweet expressions as she tells her stories.

Harper and Billie playing together. Every day Billie is still so excited to hold her, play with her, and read to her. It is so wonderful to see how amazing their relationship is and how it grows stronger every day.

Happy fall, y'all! So happy to be having the gorgeous weather we are having. The humidity hasn't been nearly as bad and the temps are in the low 80's. Today is officially the first day of fall and it is supposed to be sunny and '75 here in Knoxville. Billie is out of school today so us girls are going to do something fun together.

Harper is doing great. Just slowly growing, up to 6 pounds 12 ounces as of last Friday at the pediatrician. I was pretty devastated she wasn't 7 pounds yet, but her doctor isn't concerned but is happy with her progress still. She is sleeping so much better! I actually have to wake her up to feed her every three hours. When we go back next week, if she is over 7 pounds, I am going to ask if I can let her sleep through the night. I think she would sleep 6+ hours if I let her! Wouldn't that make a new woman out of me?! As it is, I wake her up, change her diaper, feed her, and she goes right back to sleep. She is sometimes a little fussy at night when she is fighting sleep, but usually rocking her and feeding her a snack will help her fall asleep and then I can lay her down. She loves to be swaddled, the tighter the better! She always tries to scoot herself down into the swaddle until her face is in the covers. I am constantly pulling the covers back away from her face. Luckily, we still have the heart monitor, but when that goes we will have to take away all her blankets. I am sure that will impact her sleep again, but I can't take the risk of her suffocating with a blanket, especially since she insists on covering her face up. She hasn't had any apnea or brady episodes in so long - it's been weeks, so many that I can't even remember when the last one was! That is just amazing. It's funny, though, when I go out by myself, which is only about once a week, it never fails I hear some sort of "beeping noise" and my heart jumps into my throat and I go into panic mode for about 2 seconds! At least the microwave at home isn't doing that to me anymore! I have to laugh at myself when that happens, though. I guess you just wait to jump into action when you hear that monitor go off, that you kind of program yourself to jump at any loud beep. I can just see myself now tackling a poor elderly woman in one of those grocery store motor-buggy things and shaking her silly to "revive" her after her buggy was beeping to warn others of her backing up. That is usually the noise that sets me off. So far I have been able to control my self, and even hide my panic, although I have startled a few fellow shoppers standing close to me in those first few seconds of my reaction.
Harper's eyes are still doing great. The doctor said Tuesday that they looked a little better again this week. Regression takes a very long time, but I feel very confident she will not be facing a surgery for sure now. She still has to have them checked every 10 days, but I think it will not be long until they let her go two weeks between check-ups. It does wear her out to get her eyes checked, she screams her head off from the second they start the exam until they are done. Luckily, it only takes about 2 minutes, but it is an excruciating 2 minutes for Matt and me. As soon as they are done, she stops crying and is easy to console, though. They say it doesn't hurt, but I am not convinced. She just doesn't really cry any other time. She might let out a little scream here and there if she is fighting sleep or hungry, but it is literally one scream and she is done. From the second they prop her eyes open with that mid evil contraption she screams until they take it back out. And it is a blood-curdling scream with great big tears, and a face as red as a tomato. The contraption that holds her eyes open also leaves imprints on her face kind of like pillow marks that last ten minutes up to hours later. But it doesn't really matter because it is necessary, better a few minutes of her screaming every 10 days than risk her vision.
There were conjoined twin girls born in Chicago two weeks ago. Through the internet I am still connected to a lot of families of conjoined twins. The girls are doing good so far, getting a little oxygen support and NG feeding, but surviving. I can't remember exactly what organs they share, but I know they are side by side and share a heart, and only have two legs. Can I confess a little envy that they get to meet their girls and love them and take care of them? Not that I don't want that for them, of course I do and it is what I have been praying for them. I just wish so bad I could have had more time with my boys. I wish they had also beat the odds and surprised all of their doctors the way Hope and Faith have. I can hardly remember holding them and how they felt in my arms. It seems now like a lifetime ago. It was such a short time we had with the boys, and those few hours have to be enough to last in your memory for a lifetime. If I am having a hard time remembering 3 years later, what will happen when I am old and gray? (OK, I am already gray, but you know what I mean) I don't want to forget, I don't even want the memories to fade or get dull. Harper now weighs exactly what the boys weighed together. That is amazing to me. Sometimes when she is asleep in my arms I try to make myself feel her weight in my arms and see if it jars any memories of holding the boys in my arms. Not that I am comparing her to them, but just trying to jog my memories to bring them out and let them tickle my senses and hang in the air around me. It is good to remember as long as I don't wallow. I will always love and miss my boys. That is just never going to change. They can not be replaced, and I don't' want to even try. But I am so blessed with two amazing daughters that fill my days and heart with utter joy. I love remembering my boys and I hope I can always keep those memories close and vivid, but I love living my life with two daughters even more. God has blessed me beyond measure and as I said the other day, "My cup runneth over..." God is good all of the time - Happy 1st Day of Fall to you! Thanks for taking time to visit and keep up with us.

Steady as She Grows

All smiles...she smiles great big smiles at me when I smile at her now! There is nothing more rewarding in the world then a baby smile from ear to ear - it makes everything worth it!
Starting to "coo" a bit! She likes to talk to the animals on her mobile, especially her monkey!

Good morning, everyone! Harper finally has her nights and days straightened out, which means a lot more sleep for mommy! We are doing excellent, and more importantly, she is doing wonderful! She weighed in Friday morning at 6 pounds 5.5 ounces and her pediatrician graduated her to a visit every two weeks instead of once or twice a week! She will sleep 4 hours at a time now if I let her. I only do that once a day/night, though, because I want her to keep gaining weight steadily. She usually eats every two and a half hours, like clockwork she gets hungry and will wake up to eat. But after her late night feeding around 10 or 11, she will sleep 4 hours straight before wanting to eat. As long as she keeps gaining weight good I will continue to let her do that because it helps me feel like a person again to get 4 hours in a row like that! Of course it never fails, I wake up in a panic because I haven't heard from her in a while so sometimes I get two hours, wake up and check on her, and then get about an hour and a half because, unlike Matt who falls asleep before his head hits the pillow, it takes me a while to fall asleep. We still are striving to get her to 7 pounds, but we are getting very close!
She has an appointment with the apnea/synagis clinic and the eye doctor this week. Last week her eye doctor said there was new growth in zone 3 of her eye, which is what we want! It means some of the blood vessels were able to get past the line of demarcation from zone 2 to zone 3 instead of balling up and pulling on the retina, which would have meant plus disease and surgery. This was a huge milestone and exactly what we have been praying for and waiting for. It also meant he would let her go 10 days between visits instead of 7, which doesn't seem like a lot, but three extra days will add up eventually and make life a little easier for us plus keep her away from germs a little longer.
Billie has been sick. She woke up last Thursday with what seemed like allergies, so we started on allergy meds. Then Saturday she woke up feeling really bad, so I called her grandma and asked them to come get her (to try to protect Harper from it, just in case). She never had a fever, but RSV in us is just a cold and not a big deal, but in Harper it would be devastating...it would mean a hospital stay possible on a ventilator or even worse, so if any of us get anything similar to a cold or respiratory illness we will have to be kept away from Harper. So Billie went to her grandparents for the rest of the weekend, and I disinfected the whole house. Billie went to the doctor on Monday and it was a sinus infection. She came home Wednesday after school. It was horrible to send my sick baby away, but she understood and was in the next best hands to my own with her grandma. She is such a trooper, never complains and always puts her sister first. We are so blessed with the most generous and caring daughter. She missed her sister so much when she was gone, too. Billie is better now, but still has a little lingering effects.
Rain, rain and more rain. I feel sorry for those who did have Labor Day plans yesterday because we got about 5 inches of rain. I am sure the lakes around here were like ghost towns. It is still raining today and will continue through out today, but not as heavy as it was yesterday. We stayed in, and of course would have even if it had been a sunny day, but I know it is usually a day that marks the end of summer around here. It will still be hot for another month or so, though. We usually go to Boone Lake to Matt's parent's boat house for a fish fry. This weekend was Matt's birthday, and we had tickets to go to Detroit to see the Tigers play. His family still went, and actually my dad was able to go and use one of our tickets (we sold the rest online once we had Harper and realized we wouldn't be able to go.) It was a sweep, the Tigers played three good games and everyone had a good time. Matt was a little disappointed, he has never been to Comerica Park, but he said there really was no place else he would rather be than home with us. I tried to get him to go with his parents, but he chose to stay home instead. I promised him I would take him when Harper is older, though. Maybe next year!
So today begins a 4 day work/school week and cooler temperatures for us! Harper and I will enjoy the cooler temperatures on our walks once the rain stops. She loves her stroller and always has a good nap on our walks. I enjoy the exercise and getting out of the house helps me keep my sanity! I am really a home body, though, and I am not struggling with cabin fever yet. That may change, but for now I feel so blessed to have my family together under one roof and have this miracle little baby to care for. I am living my dream right now, being a stay-at-home mom with two miraculous daughters and a wonderful husband. I am just counting my many blessings and enjoying what God has given me. God is so good, all of the time!

Apnea Scare

So we are back in the hospital, but hope to go home tomorrow. She started having a lot of apnea episodes night before last so her pediatrician wanted to play it safe and admit her. We think it's reflux, but aren't sure yet. Her caffeine levels are very high so we are stopping that dose for now and she has started on meds for reflux. I'll update when I can but your prayers are greatly appreciated.

Posted from Blogium for iPhone

Happy Due Date

Yesterday was Harper's due date! We took her to the pediatrician yesterday and she weighs 5 pounds 4.5 ounces. She is gaining slowly,but at least she is gaining. He wants us to slowly try to inrease her feeds. I can hardly believe she is 3 1/2 months old on her due date! We are so blessed to have her home and doing so well. Since she has been on the caffeine she hasn't had any more apnea events, praise God! She always recovered quickly, but it is so scary when your baby stops breathing!

On Sunday we had a "newborn" photo session. She is actually 3 1/2 months old, but since it wasn't possible to do professional photos yet we are just now doing them. Nancy Hellsten came out to our house. It wasn't easy, Harper likes to be held most of the time, so we would get her good and asleep and then set her in a pose and she would wake up, fuss, and usually pee or poop! Luckily, Nancy is very patient! But we did get some good shots. I haven't seen them all yet, but Nancy got two of them up already on her blog . I will let you know when she has more up, but for now you can see them at http://www.nancyhellsten.com/blog/2011/08/08/Little-Miss-Harper-Grace.aspx I am so excited about these photos. We just love Nancy, too. She did our wedding pictures and then volunteered to capture the boys birth and our special time with them. We have her work plastered all over our walls! I am going to have to start taking older photos down in order to make room for new stuff. I have a hard time taking photos down, I always fall in love with pictures, especially those of Billie and now of Harper!

Matt went back to work yesterday. It was hard for him to be away all day,but it went good. He met us on his lunch break to go to the pediatrician. Today Harper goes to the eye doctor. I am confident that her eyes are still going to be stable, but we aren't out of the woods yet, so please pray for her eyes. Only one more week and we should be in the clear! So blessed we may not have to do eye surgery! God is do good, all of the time! I realize I had some lessons to learn through not only all of this, but through pretty much the last 10 years of my life. They were hard lessons to learn, too. God kept trying to tell me to let go and let him be God, but I am such a controller and worrier I just couldn't do that for more than a few days. But seeing your baby so tiny and frail and vulnerable, being kept alive on machines, brings you to your knees. I have been to my knees before; When Michael was diagnosed with cancer, when the doctors said there was nothing else they could for him, when we were told we were pregnant with conjoined twins, when we were told they could not be separated, when Joshua and Caleb took their last labored breath in my arms. But this was different. Everyone always tells me I am so strong, but I think I am completely opposite. I am so weak. I go to God with my troubles and instead of turning them over to Him, I try to tell Him how to handle them. Not this time. I knew we had a long road ahead of us when I saw Harper for this first time, but God gave me this amazing peace that she was going to be OK. I have been told by so many "God doesn't put more on you than you can handle" and it used to make me mad. I would think,"Easy for you to say, you aren't walking in my shoes." What the saying should be is "God won't put anything on you that HE can't handle!" God told me that day when I first laid my eyes on Harper Grace, "Be still and know that I am God." And I was. I knew God had this, and there was nothing I could do. I am sure He has said that to me over and over again for the past 10 years, but I was not willing to listen before. I told Matt with such conviction that Harper would make it, he believed me, too. The doctor told him she had a 50/50 chance, but I was so sure she would be OK we both just put our trust in God and started the ride on the roller coaster of the NICU. And here we are today, the day after my due date with a beautiful baby girl keeping us up at night! I don't mind at all! We will see if I still feel that way in 6 months if she still isn't sleeping. I feel so blessed to have two amazing daughters. God has always been so faithful. When I am weakest, He is strongest. That got me through when I had the boys, and prepared me for our journey with Harper Grace. His Grace is sufficient for me. I held onto that and God continuously reminded me of that and then showed me how true it is. I have a miracle sitting in my arms this morning. Thanks be to God. He is good all of the time.

Good Friends...Good Times

How sweet are these two girls?! Billie loves to hold her sister first thing in the morning. I look at the two of them together and just thank God for blessing my family so much. I am so glad Billie and Harper will always have each other. God is GOOD, All of the time!
Bright eyes...for those of you who knew me as a baby, can you see the resemblance? I think it is amazing to look into her eyes, and see my own looking back at me!
Leatha, Joe, and I on our way to our 20th High School Reunion. I still can't believe it has been 20 years! It definitely doesn't feel like it.
Matt stayed home with the girls and sent me this picture just a few minutes after we left. He was so sweet to stay and take good care of them, and to update me through out the night with pictures of them, too.

20 years...it doesn't seem possible but here we are, anyway! It was so fun to see so many sweet and wonderful people from high school. We only had about 70 people, but it was still wonderful. I think it is sad that more people didn't show up, but it was so good to see those that did. Joe and Leatha came in for it and they picked me up and drove me. I was so thankful to have them there, it would have been hard to go in by myself if they hadn't been there. Matt had to stay home with Billie and Harper. Since she is still so little and she bradys so much, we don't want to leave here with anyone else just yet. Until you are used to her brady or apnea episodes, it is very scary...well, it is scary even when you are used to them, but if you aren't used to them you are apt to panic and not handle them well. She does usually recover on her own, that is one of the good things about the monitor...since it is so loud, it stimulates her and helps her recover, but still we don't want to put anyone else in a bad situation. Don't misunderstand me, the monitor is not designed to stimulate her or help her in any way. It is just a tool for us to know if something is not right. I am so thankful for that monitor. It gives me the peace of mind to be able to close my eyes and go to sleep. I know if she stops breathing the monitor will wake me up. The monitor is cumbersome and awkward, but so reassuring. So back to the reunion, Matt was so sweet to send me pictures and updates during the evening. I was able to relax and just have a good time, I didn't even feel guilty for being gone! I am so thankful Matt is so good with her and is always so willing to be with her and care for her. And I am so thankful for Joe and Leatha. I still would have gone if they had been unable to make it, but it would have been much harder to walk in by myself! I was able to visit with them which is always fun. There was a table there with nostalgic items from high school and they had our "Senior Predictions" on them. They got half of mine right - "Marry Michael Williams, and replace Edie Ellis on the news." I remember being mad at Darwin Williams for writing that because I was hurt that it was all about Michael and not about me! But I guess he wasn't very far off so I owe him an apology after all these years, ha! It was a very good night spent with very good friends and I am so thankful for the experience.
Tomorrow we are having our photographer, Nancy Hellsten, out to our home to take newborn pictures of Harper. I know she isn't newborn, but she looks it! I am very excited to get beautiful and artistic photos of Harper and of Harper and Billie together. Nancy was there with us when the boys were born and she is responsible for the beautiful photos of Joshua and Caleb that we treasure. Nancy was also our wedding photographer and we absolutely love her work. We are so comfortable with her, and I am so thankful to count her as a dear friend. I know we will be getting amazing shots of our two beautiful girls.
Harper is doing very good. She was having a lot of apnea episodes, as many as 10 a day, but Dr. Greg put her on caffeine and she is doing so so much better. She actually hasn't had any more apnea episodes since she started on the caffeine. She still bradys some, but only when she eats. This week she gets her eyes checked again, and then weight checks at the pediatrician's office. Next week she will do both of those again, and also visit the apnea/synagis clinic. They take care of the heart monitor/apnea episode stuff and also the RSV immunizations. I think she will have her first RSV shot next week, although I am not sure. She will have one a month during RSV season which runs from August through April. We have to protect her from RSV, with her lungs being so premature and damaged from the vent, it would be a disaster if she got RSV. She would for sure end up on the vent again, but she might not even survive an RSV infection. This is one of the reasons we have to keep her so isolated. Any respiratory illness would be a night mare for her this year, and maybe even next year. We are just praying we are able to keep her healthy and give her a chance to grow and also build up her immunity. It is hard for us to not show her off to the world - we have been through so much and we just want to share her with all of our friends and family, but her health and safety comes first. Dr. Greg says if we can just get her over 7 lbs it will change our life, so our goal is to get her over 7 pounds as soon as possible. We will still have to keep her pretty isolated, but she will be able to keep her temperature up better, eat better, sleep better, and just be stronger in general. I can't wait until everyone I love can see her and hold her, but until then I will share her with you through pictures!

5 POUNDS!!!

Doesn't she look tiny in her crib?! She actually slept here for over an hour while I folded and put away her laundry.
First bath at home...she loved it!
Billie loves to hold Harper. She usually holds her first thing in the morning and last thing in the evening before bed. Very sweet.
This was from the day we brought her home...Billie was just so in love at first sight!

Finally...5 pounds 1 ounce on Friday! We take her back to see Dr. Greg Wednesday, and I am hoping she will be even bigger. We need her to get above 7 pounds and then we can relax just a little bit. We took her to get her eyes checked yesterday and they are still stable. The doctor said that if we can keep them stable through the next two weeks he thinks we will be in the clear and not need surgery, but we are still not out of the woods just yet. I have no doubt that her eyes are going to be just fine, though. She still isn't sleeping good unless we are holding her, but she is sleeping on her own for larger stretches now. I don't mind holding her...I had to wait so long to hold her after she was born, so it is just fine with me that she wants to cuddle. We are taking shifts, Matt taking the first shift of the night while I sleep and then I get up around 2 and take the second shift. We each get around 5 hours, and sometimes take a nap during the day, too. It is working out just fine. I will update again when I have more time...Harper is hungry!