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

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!

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

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!