ROP update

Harper's ROP has progressed to stage 2, unfortunately. The doctor was not surprised and almost seemed to expect that it would. He said still not ready for surgery. We will look at them again next Tuesday and go from there. The good news is there is no Plus disease, at least not yet and hopefully there won't be. There is still a chance this can regress and get better on it's own without surgery. That is my prayer right now. Please pray for strength and guidance for Matt and I, and for her doctors to be led by God in their care of her. I know He has a plan, and He's got this covered!
We have met some sweet parents of other preemies here, two couples in particular I have grown very attached to. I won't mention there names yet because I haven't asked them if I can yet, but please be in prayer for their babies, too. Both are girls and we will call them A and M for now. Baby A is having surgery tomorrow to close her PDA in her heart and I know they could use your prayers. I know you are all faithful and your prayers really do make me feel better and I want that same comfort for baby A's parents, too. Baby M will have surgery eventually once she heals more from a previous surgery so please be in prayer for her, too! I have given you a lot to pray about, huh? Sorry no pic this time, I just wanted to give you a quick update. Thanks for loving and supporting and praying for us!!

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Harper is 9 weeks old!

Isn't she adorable?! I just can't believe how far she has come in just 9 weeks. The real amazing thing is she should still not be born yet...I should not be having her for another 6 weeks! But by the grace of God she is here and is thriving! Nursing has been a challenge, but she is figuring it out. She did really good the first few days, but then she started forgetting to breathe, choking and having bradycardia episodes which totally freak me out! Bradycardia is where they drop their heart rate very quickly - she stops breathing and turns blue! It's awful! I am able to see it and realize what it is before the monitors go off so by the time I see on the monitor that her heart rate is dropped to like a 37 from 160+, she is starting to breathe again and come out of it. There has only been one time that I needed help to get her out of it. But I always call out for her nurse, just because I need the reassurance of one of them being there just in case I am unsuccessful. It is just something she has to learn to do, and actually babies aren't really ready for the whole suck, swallow, breathe thing until they are 34 weeks, which she will be on Tuesday, so she is doing a very good job. She does get some milk...we weigh her before and after I nurse her to see how much she gets at a time...the most she has gotten is 27mL (almost an ounce!) but she usually gets around 5 mL. After I nurse her we subtract what she got from her usual feeding amount, she is up to 32 mL now every 3 hours, and she gets the rest by NG tube feeding (a tube that goes from her nose into her stomach). She weighs 3 lbs 8.5 ounces and is 14.5 inches long. Exactly what the boys were each when they were born, at 34 weeks. AMAZING! She really looks like a mix between the boys and Billie, if you ask me. Although I did see a picture of Chandler as an infant the other day and I could see Harper in her, too. Maybe she will be a mix of Billie and Chandler, wouldn't that be cool? I will tell you one of the reasons I have a very hard time with her brady episodes is that when she is blue and lifeless I am immediately taken back to the night I had the boys and held their lifeless bodies in my arms - welcoming them into the world while I also told them good bye. The first time it hit me like a ton of bricks. I just wasn't expecting it because she had been doing so good at nursing. I also wasn't expecting her to turn blue so quickly. It is terrifying and I am sure any parent would feel the same, but add the experience of losing a child/children and it is that much more terrifying. I am working through it, though, and Matt has been amazingly supportive and helpful through it. The first time it happened I was by myself because he had to be at work, but whenever possible he is there with me. I am now nursing her twice a day so it is a little harder for us both to be there together.
So because everything has been going so good, we knew something would probably be going wrong. The same day she did her first brady episode while nursing, she had her eyes checked again. Unfortunately, the doctor found stage 1 ROP (Retinopathy of Prematurity). This is where the blood vessels are premature, and there is a ridge that forms in the eye that can disrupt the vessels from maturing correctly. If left untreated, it can cause the retina to detach and cause blindness. They will not let this happen, of course. They can do a laser procedure to correct the damage and her eyes should mature correctly. She will have vision problems that will be corrected with glasses. Most preemies need vision correction of some sort, 51% of micro preemies get ROP. There are 5 stages, so stage 1 is not bad. But because her ridge formed so quickly in just 7 days and was so big, the doctors feel she will need surgery. She will have it before she comes home. They will recheck her eyes Tuesday and we will know more. The eyes get their worst between weeks 32 and 34, so they may have gotten worse since they checked them Tuesday, and I am prepared for that news ( I think). Last Tuesday was a very hard day, to say the least. There is a chance for regression, or that they will get better on their own. That is my prayer. The thing with surgery is that they will have to put her on a ventilator, and that just feels like a huge step back and scares me to death. I do not want her back on a ventilator. She has done so so good! But they say the longest she would be on it is 48 hours, and hopefully they would extubate her before she came back from surgery. Of course I do not want to risk her eye site, and I know the doctors know best and will do only what is medically necessary for her. I just have to put it in God's hands- he has been with Harper this whole time and will continue to be. As things go, this is not the worst thing that can happen to a preemie and we have basically not had to deal with any of the really bad stuff, praise God. So if something had to go wrong, this is the best of the bad, if that makes any sense at all. I will try not to keep you in suspense on Tuesday. The doctors just call an hour before they come and tell them to dilate the baby's eyes, so we don't know what time on Tuesday it will be but the past three weeks it has been at lunch time. God is still preforming miracles, Harper is proof of that, and I know He can take care of this, too. I have just been praying for Harper's eyes, knowing that God will fix him however he sees fit - whether that be surgery or regression. And I know He will be with Harper the whole time. God is good, all of the time!

Look, Mom! No cannula!!

God is so good, all of the time. There has not been a day go by since I was pregnant with Harper that I haven't been able to see God's abundant blessings and Miracles. Harper is doing great! Today she weighs 2 lbs 12.97 oz. And she has been without oxygen support for over 24 hours now! She is up to 25 mL every 3 hours on her feedings and is tolerating them well. Tonight is going to be huge for both of us...I am going to try to nurse her for the first time ever! I'm so nervous about it, but excited, too. It may go well, but it may not. This will be her first attempt at eating ever! Up until now she has been getting all of her nutrition through an NG tube. So we will see how she does at sucking, swallowing, and breathing all at once! That's a lot for a little girl at only 32 weeks gestation! Prayers that it goes smoothly will be greatly appreciated. She will need practice and time to learn. But I know she can do it!

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Sisters

What an amazing day we have had. Harper is now on a cannula, has been since last night at 6:30! She is doing so great - God is so GREAT! I can't see her or think about her without getting choked up and just praising God for this amazing miracle, Harper Grace. Today was the first day that Billie and Harper got to see each other, face-to-face! It was such a beautiful experience. Matt went into the NICU and with the help of our wonderful nurses, he carried Harper over to the window - first time she has been away from her isolette! She looked even tinier as he brought her over to the window. Billie got big tears in her eyes as she greeted her tiny little sister for the first time. It was so precious. And as Billie said "HI, Harper!" Harper looked straight at her with her eyes opened so wide, so alert. She just stared at Billie in amazement. I think she was thinking to herself "There you are, Billie! Where have you been all of my life? I have been waiting to see you, big sister! I missed hearing your voice." Matt held her there for about 15 minutes, the NICU nurses all taking pictures and video for us (and all with big tears in their eyes, too.) It is amazing when you meet such loving, caring people. They are there to do their job, but it is so much more than that. I can honestly say I love these girls, because they love my baby. I thank God for them every day, several times a day. I will never be able to repay them for what they have done for my daughter and our family. They are all a gift from God. Back to the first meeting: Harper would look straight at Billie when she heard Billie's voice, and she just had the sweetest, most alert look on her face. Way older than her 28 week and 5 days face should be able to show. If you think about it, she should still not even be born for another 11 + weeks! But by the grace of God, here she is and thriving, too. She looked at me, too, when she heard my voice. But she was just enamored by Billie. I guess that is the first child she has ever seen. She can't see the other babies in the NICU, at least not yet because she and they are always closed up in the isolette. After Billie's visit, I went in to visit with Harper and I could tell she was worn out from the events of the day. She would start to close her eyes, and then jerk them back open and look straight at me. I felt she was wondering if I was still there. So I got my face down where she could see me good, and I put one hand on her bottom and one on her head and just spoke softly to her. She eventually closed her eyes and fell asleep. So peaceful, so precious. I can't believe in just 4 weeks she is able to go to the window for her sister! I thought it would be another month at least before Billie would get a glimpse of her little sister. I feel so blessed today, and my heart is just overflowing with happiness and love. I feel like we finally have the miracle we have been praying for all these years. God is still in the miracle business, and I am so blessed he chose our family for one! God never gives up, even when we do. Billie has been praying to God for a baby since she was 3 years old, and today she finally feels like she has a baby sister. As we were walking to the car, she said "I can't wait to go back to see Harper!" and she had a "hop" to her step - so happy she couldn't be still. She has been cleaning up her room this afternoon, and she keeps bringing toys and dolls and stuffed animals out that she wants to give to Harper. She also has started a video journal for Harper. She is telling her all about her birth and her stay at the NICU, and also giving her big sister tips about how to survive as a girl. I have two amazing daughters! I am so thankful I get to watch them grow up together, loving each other and supporting each other. When we are gone, they will have each other. Their special bond has already formed. Yet another miracle God has blessed our family with.

Graduation!!!!! Woohooo!!

Harper is such a genius, she has already graduated from college!! Lol, the NICU nurses did this for me as a surprise for graduation. And I was blown away! Matt even approved of the orange and white-which is a miracle in itself! So I did graduate Wednesday with the rest of my class, the best group of young people you will ever come across. I am so blessed to have made wonderful friends at UT. They have all been so good to me during these last few weeks, but they were wonderful to me before this happened, too. So now I can add Bachelor of Science in Nutrition to my resume - it really hasn't sunk in yet, but I think it will once everything settles down. It has been a whirlwind the past three weeks! Harper is three weeks old today! Woohoo! She is doing good. She does have some BPD from the vent, but that was to be expected. We are just praising God it isn't pneumonia, that was what the doctors were fearing when they cultured the fluid on her lungs Thursday. Since it wasn't pneumonia they have gone ahead with another round of steroids and after 6 doses over 3 days, they hope to attempt another try at weening her from the vent. It is scary and exciting all at the same time. Everything has come with mixed emotions, every decision seems to have a double-edged sword attached to it. But the staff at Children's are just amazing and they know exactly what they are doing. The rest we put in God's hands, and I know He has it all under control. The past three weeks has taught me again that I am not in control, and to just let God handle it. I am actually doing a good job of that, for me. I am not worried like you would think I would be-being the usually worrier that I am. God is good, and I believe in my heart Harper is going to be OK, we just have a long road to get there. But I think of the testimony she will have and I know she will do great things for the Glory of God, as will her big sister, Billie. I am very blessed to have two strong, beautiful girls! I know God has great things planned for their lives. Please be praying the steroid does it's job, and Harper does hers, too! I could use some prayers for my recovery, too, it is not going as quickly as I want or need. The doctor says that was to be expected after so much went wrong and so much invasive surgery, but it is wearing on me. I will update as soon as anything changes. Thanks for your support and prayers. When I am at my weakest and can not pray, I feel the prayers going up for us and they comfort me.

Happy Mother's Day

I got to actually hold Harper Grace on Saturday!! It was so amazing, and so needed. She did great for her first time out of the incubator, too. She struggled a little bit in the beginning, and we all knew when she was done, but it was so sweet to hold my baby close to my heart. She is doing very good. She was given another blood transfusion today which will also help her oxygen levels and her energy levels. Her SIMV rate on the vent is turned down to a 20, and her O2 concentration is usually between 21 and 23. She is now getting Vitamin A to help prevent BPD. She has had two doses so far and will receive 12 total. They actually only had two doses in the whole state of Tennessee, and had to search elsewhere for the rest of them. Luckily, they were able to locate them and they were scheduled to be delivered today or tomorrow. She is really doing good for her age, and we are just praising God that she is doing so well. We are praying that she continues to remain strong and fight!
I took my last exam today, praise God. I am so thankful to be done, but I am also so thankful that I was able to finish. Graduation is Wednesday, and I can't wait. I asked one of our NICU nurses to put an orange and white bow in Harper's hair for Wednesday. I also decorated my mortarboard- I will wait to put a picture up so everyone is surprised at the ceremony. It turned out really good and I am so proud of it! Thanks to Cathie for shopping for all of the stuff I needed to decorate it with.
Billie is doing good, although she really wants to see her sister and she can't wait for her to come home. It is hard for her because they don't allow children into the NICU. Hopefully before too long Harper will be big and strong enough to hold her up in the window and Billie will at least be able to get a good look at her. At least she can see pictures and videos now.
All I have energy for today, but I will continue to update as I can. I am doing better I am just not myself totally yet, but I am getting better every day. It is just going to take time for me, and for little Harper Grace. But God is Good ALL OF THE TIME, and she is our little miracle we have waited so long for. I thank God every chance I get for our miracle Harper Grace. We are very blessed and I feel it all the way down to my bones. Please continue to pray for Harper and for all of the nurses and doctors in charge with her care in the NICU-they are miracles, too!

Steady...

Harper is doing good, after a bad night Monday. She has been steady for the last two days. Her vent is still up kind of high at 30, but it was at 37 yesterday morning, so she is coming down a little. She finally had a little stool pass yesterday afternoon, so they have upped her feedings to 6 a day! Please pray that her bowels continue to work- it's vitally important. They gave her another blood transfusion yesterday and hopefully that will help her with her oxygen concentration and her energy so she is able to breath better. They will do another brain scan tomorrow, so please also be praying that there is no bleeding in her brain.
I am still not feeling great, but I am improving every day. My goal is to update the blog daily, but until I feel better and final exams are over, it just isn't possible yet. I will try my best, though. Thank you for you love and support, and especially your prayers. Harper has a long, hard road ahead of her but I know she can do it because with God, all things are possible. She is the miracle I have been waiting for!! God is good, all of the time. PLEASE KEEP PRAYING!!