Saturday, August 20, 2011

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.

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Tuesday, August 9, 2011

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.

Sunday, August 7, 2011

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!

Tuesday, August 2, 2011

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!