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.

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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.

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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!

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 good...it 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!!

Update on "Baby A"

Billie is in horse camp this week and enjoying every minute of it. She actually fell of a horse yesterday, but didn't get hurt. I told her before she went "No falling of your horse!" LOL! But since she fell and handled it so good, she gets to choose her horse today and can ride which ever one she wants! She was very excited about it, so much so I asked her if she fell on purpose so she could pick her horse! So today she will be riding CJ. She says she loves CJ because he is so cute and so sweet and he acts like a dog. I love his name since to me it stands for Caleb and Joshua, I thought very ironic. So today Matt took her to horse camp so he can see her with her horse. It should be fun for both of them.

Since you were praying for her and her family, I think you deserve an update. I did get permission from "Baby A's" parents to talk about her here, so her name is Addison and her sweet parents are Rachel and Phillip. Addison was born at 25.2 weeks and just about 100 grams bigger than Harper and she is now about 4 weeks old. Her PDA (or "hole" in her heart) did not close with the medication they gave her the way Harper's did, so she had to have surgery to close it yesterday. She came through with flying colors and no complications. So now Addison should start really improving and they hopefully will be able to ween her off the vent soon. She is a precious little miracle just like Harper and we are so thankful for her strong, fighter spirit and for her special family and it's place in our lives.
Harper is doing great. She is now nursing twice a day and yesterday morning she did great and didn't brady at all, the scale said she only got 2 mL, but that seems impossible because she was doing such a great job. Last night she did equally good and got 6 mL, but she did have a brady episode. She brought herself out of it quickly, though. Speaking of Harper, I need to leave and head to the hospital to nurse her now so I will update again soon. Thank you for your prayers, please continue to pray for Harper and specifically for her sweet eyes!

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!