Harper Update

I haven't been very good about keeping everyone up to date on Harper lately and I'm sorry.

We came home two Fridays ago and tried to get the hang of everything. The boys went to stay with Nemo until Thursday afternoon so that I could totally focus on caring for Harper. It was so nice to get everything in order here and get a little rest myself (emphasis on "little"). I've had a lot harder time really recovering from the surgery this time and it felt so good to just sit and rock my baby all day. Harper and I, along with a sweet friend from church who drove us, went to Lubbock last Tuesday for her first cardiologist appointment. She did great on the trip there and back and even through the two hour wait in the Dr.'s office. We got a great report from Dr. Robinson. She has grown, which is our main objective and she now weighs 6 lbs, 6 oz. She had just had an echo cardiogram the previous Friday, so he didn't see a need to redo that so soon. We are supposed to see him twice a week, but because she looked so great, he didn't want to see her back until today. I think that the fewer trips to Lubbock that we have to take, the better it will be for Harper.

I was really encouraged by her appointment. I know that Harper's situation will get worse at some point in time...it is inevitable. But, I was really hoping and praying that we could have at least a couple weeks at home before things got bad. I questioned whether or not we had made the right decision to bring her home, but since she is growing and doing so well, it has really put my mind at ease.

My boys came home Thursday and stayed until Monday. It was SO good to all be home together and I even survived my first day with all three kids by myself. Eli and Landon love Harper, but they pretty much leave her alone most of the time, which is really nice. They will occasionally come by and kiss her forehead or say something like, "I like her, mom." It makes me smile and I tell them that I like her too. And I do...I like her so, so much.

We went back to Dr. Robinson today. Harper has been showing subtle signs that she is struggling a little more: rapid breathing, lower oxygen saturation levels, sweaty skin, and she seems to tire more easily and sleep more. The great news today was that she gained 12 ounces in one week and now weighs 7 pounds, 2 ounces. We could be close to 8 pounds by next week at this rate.

While doing an echo cardiogram, Dr. Robinson mentioned that it seems as though the hole in her heart is getting bigger. This was so discouraging to hear. There is a point at which a hole is so large that it cannot be patched, which would mean we would have to take a completely different route with surgery. This would mean the difference between one surgery that fixes the problem completely and three surgeries that still don't guarantee a good heart at the end. This would be completely devastating to us. It is our prayer that the hole in Harper's heart stays within the size limit of being patchable.

Dr. Robinson also said that he expects her surgery to be within the next 1-2 weeks and no later than 4 weeks from now. The possibility of surgery as soon as next week makes me completely anxious. I try to not worry, to hand Harper's situation over to God, to have more faith...but I feel like I'm failing. I'm terrified and I'm a complete mess.

So that's where we're at right now...just waiting. We have another appointment next Tuesday (unless we feel like we need to bring her in sooner).  Eli and Landon went to Nemo's last night, but will hopefully be home Thursday evening. My mom is coming this weekend and I absolutely cannot wait. So here's to enjoying another week home with my family.

Mother's Day

This Mother's Day, I can't help but be overwhelmed by gratitude and emotion as I think about the tremendous blessings that being a mother has brought me as well as the blessing of my own mother, who prepared me so well for this huge responsibility with her love and example.


My mom left almost exactly a week ago. That's right...she was here for four whole weeks. During that time, she helped me heal, drove me to and from the hospital, did all my laundry, bought my meals, cleaned our room at the Ronald McDonald House not once, but twice, was anywhere I needed her to be so that I could spend time with Eli and Landon, Dustin, and Harper and never go too long without seeing any of them, encouraged me to stand up for myself and Harper (and then did it for me when I chickened out), went to Harper's early feeding by herself some days so that I could get a little extra sleep, was at the hospital with me from early in the morning to late at night (as late as 3 a.m. one terrible night that we had a bad nurse), got up every three hours with me in the night and took my milk downstairs to the fridge, laughed with me, cried with me, and loved Harper with me...for four weeks!

I just couldn't have done it on my own and I am so, so thankful that she was able and willing to stay for so long. I hope that one day my kids love and adore me as much as I do her!

And during all of this time, my sweet mother-in-law has had Eli and Landon and has taken such excellent care of them! It has been a huge relief to know that they are with someone that loves them so fiercely and would do absolutely anything to ensure their happiness. She has cooked, cleaned, played, done laundry, watched Eli and Landon's favorite shows over and over, gone on walks, bought way too many happy meals, driven thousands of miles so that I never had to go too long without seeing them, and most importantly...loved my boys almost as much I do. She has taught me many lessons on selflessness and she continues to be such a blessing in our lives.

I have so much love and respect for her for so many reasons, but mostly because of the fact that she is responsible for the person I married. If my boys could turn out exactly like their dad, I would be one extremely happy momma!

Happy Mother's Day to all of you mothers out there, but especially to the two who I get to call my own.

 I love you both!

Third Time's a Charm

So, we've been altogether absent from the internet world for quite a while now, but we have good reason. We finally got to come home and we have been totally consumed with enjoying life at home with our sweet Harper.

Dr. Robinson mentioned the possibility of going home with a feeding tube two weekends ago, but I tried not to think much of it to avoid yet another disappointment. That next Monday, Dr. Carroll mentioned the same thing and asked how we felt about it. We, of course, were all for bringing Harper home...no matter how much work or equipment it would take.

So the very next day, the case manager got to work trying to coordinate everything: equipment rentals, insurance coverage of everything we would need, home health nurses to come out and visit us, and referrals for special programs to help Harper. Meanwhile, Dustin and I got busy learning everything there is to learn about tube feeding, checking tube placement, operating the feeding pump, drawing up medication, and how to work the monitor (most importantly...how to make it shut up).

I still didn't get my hopes up. Every time I even mentioned the possibility of going home, I followed it up by saying, "if it even happens." Up until the very last minute in the NICU, I refused to let myself believe that it might actually happen because I just couldn't handle another disappointment like the first two.

I could hardly believe it when we finally got the okay to walk out the door and take our baby girl home.

I was so excited, relieved, and just very, very happy.

Then we got in the car and Harper's monitor kept going off and it was almost time to feed her and I began to feel the weight of what had just happened. We are totally and completely on our own now. I don't know that I have ever been more anxious or overwhelmed than I was on the 1.5 hour drive home on Friday. It didn't help that when we hit the county line, you could hardly see through all the smoke from the fires around town.

After several days on our own, I couldn't be more sure that we made the right decision to bring Harper home...even if it is just for a few weeks. We had a really rough last week in the NICU and for whatever reason, we just didn't receive the same level of care that we had the first 2.5 weeks, which was quite frustrating for me. Overall, I am extremely pleased with and thankful for the way that Harper was taken care of. We had so many excellent nurses and Harper was blessed to have them. A big thank you to Aimee, Lin, Jana, Susana, Jamie, Stuart, Bennie, Cindy, Beth, Ebeth, Paulett, Veronica, Shanna, Tiffany, Shellie, Suzie, Jan, Dee, Dr. Carroll, Dr. Contreras, Anna, and so many others that my tired mind can't think of right now. It is certainly a special group of people there that take such good care of these tiniest of patients (and their tired, hormonal mothers).

So we are home and loving it. We continue to tube feed Harper so that she can have optimum growth these next couple of weeks before surgery. Dr. Robinson feels pretty confident that sometime between 6-8 weeks of life, she'll become so symptomatic that we must go ahead with the surgery. She is 4 weeks old today, so we don't have much time. In the meantime, I'm going to soak up every single minute that I have with Harper. I'm going to make sure that she is the very most loved baby in the world. It feels so good to know that she's loved 24 hours a day now instead of just the 12 that I was able to be at the hospital.  We are so blessed to have this time with her at home.

Blogging has most likely become a thing of the past for me. Taking care of Harper is pretty much all consuming and it seems like there is little time for anything else. I know it will get easier as we go, but it won't get any less time-consuming, so forgive me if updates are fewer and farther between. Thank you for checking in on us!

Here are a few pictures of our homecoming.

Please notice Harper being threatened by a boy with a wooden spoon. That's why my sweet boys have spent several days at Nemo's house this week :)

Picture Overload

Instead of boring you all with the details of what we've been up to, here is our life in pictures from the past two weeks.


I get to sit and hold/stare at this sweet baby all day long. While I consider this a great privilege...I can't help but think that I would enjoy it so much more from the comfort of my recliner.

Dustin and Nemo bring the boys up to see me every few days. They go to the hospital and visit Harper while Grammy and I spend some quality time with Eli and Landon. Last week, we played at the park across from the hospital.

 Eli and Landon were just enthralled with throwing rocks in the water, so we spent most of the afternoon/evening doing just that.

Look at Eli's perfect form :) Maybe he'll be a famous pitcher like his great-grandpa.

Here's a peek into life in the hospital. This is Harper's little area of the NICU. Our sweet nurse, Aimee decorated her dry erase board and another sweet and fun nurse, Jana put pictures of Eli and Landon on her bed so that they can watch over her at all times. We miss Nurse Amy (from when Eli and Landon were here), but we have been well taken care of in her absence. Amy sent Harper a package the second day we were here with a pink Aggie blanket for Harper and this jar in between the two stuffed animals in the picture below. It says "Harper's Blessings" on the outside and it is full of scripture, quotes, and song lyrics that are encouraging and keep us mindful of the fact that our God is completely in control of Harper's situation. There have been many nights that I have sat here with Harper and read her "blessings" to her and they have brought peace and comfort to us. Amy has been such a friend and encouragement to us the past 2.5 years and I'm thankful that our paths crossed the day Eli and Landon were born.

Harper eats every three hours. Right before her feedings, we take her temperature, change her diaper, clean her cord with alcohol, and wrap her up tight to get ready to cuddle with our sweet girl for the hour it takes to complete her feeding.

Harper and I just live for the moments that Dustin comes to see us. Seeing him with Harper makes me fall in love with him all over again. I never thought I would be okay with Dustin loving another girl more than me, but I can definitely make an exception for Harper.

Here is Harper's monitor that keeps track of her heart rate, respiration, and oxygen saturation. This was certainly a moment to document as Harper's oxygen saturation was at 100%.

Harper and I have been so very blessed to have Grammy here with us the past three weeks. She has to leave on Wednesday and I'm anticipating a complete meltdown on my part when reality sets in.

This past weekend, Grampy came to meet Miss Harper (and subsequently fall in love with her from what I hear). He and mom stayed here in Lubbock and took care of Harper so that I could go home for one night and be with all my boys on Easter.

I had a great Saturday evening and Sunday at home. I spent a lot of time with Eli and Landon and got a lot of rest. They were pretty excited (and a little confused) about the Easter Bunny bringing them presents.

We worshipped in Snyder, which was very good for the heart. Everyone there is so supportive and encouraging. We have just been completely humbled and taken back by the love that has been shown to us by our family at 37th street church of Christ.

After worship, we headed out to Ross and D'Ann's house for a delicious lunch. Eli and Landon love to climb on all of Ross' tractors!

Ross found four baby bunnies in the yard and Landon immediately put it all together that this was the bunny that had brought him a present that morning. He's so funny! Ross and D'Ann were so kind as to package two bunnies up for Eli and Landon to take home. I'm sure their intentions were good, but I'm questioning any friend that would give my children wild animals :) It's just a good thing that Nemo (lover of all animals big and small) is there to take care of them. I'm certainly at my limit of living things that I can take care of.

Eli and Landon pretty much hate the camera these days, so I didn't get a single picture of them with their shirts tucked in or without dirt all over their face. Oh well...boys will be boys.

So this was overwhelmingly long, but now we're all caught up and I'll try to post updates on Harper more often to keep you all informed on her progress. We do have big news regarding Harper: She has now reached the 6 pound mark. Each day of growth is an answered prayer and we are so thankful!