Monday, April 25, 2011

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!

Saturday, April 23, 2011

Quick Update

I'm sorry I've neglected our blog so much this week. To be honest, it started out to be a pretty tough week physically and emotionally and I just didn't have it in me. I have a lot to talk about and a ton of pictures of my sweet Harper, but for the moment, I'm just going to give you the quick version.

Harper is doing really well. They started her on a second medication that helps her heart pump more efficiently and they took away all of her bottle feedings except for two and it has made all of the difference. She is alert a lot more, her oxygen saturation has been in the mid to high 90's, and she even has cried a little (gasp!). She just seems a little stronger since she isn't wearing herself out trying to eat.  She weighs 5 lbs, 15.4 ounces, so we are getting really close to 6 pounds!  She has gained weight four nights in a row now, which is a big deal.

Dustin and the boys came up to see me yesterday and I came back home with them this afternoon, so I'm at home with my three boys for the first time in almost a month and it is just wonderful. We've played outside until almost dark, watched a movie, taken a bath, and done a lot of cuddling. It's certainly bittersweet as I miss Harper so very badly, but she is being well taken care of by Grammy and Grampy, so I can enjoy my time here a little more knowing that. I'm looking forward to worshipping here in Snyder tomorrow and seeing all of the people we love so much.

So that's the quick version. I certainly don't want to waste my precious moments at home on the computer, so I'll put some new pictures up soon.

Monday, April 18, 2011

A New Plan

Harper had another echo cardiogram this morning. Because of the symptoms she is starting to show, Dr. Robinson wanted to make sure everything was the same with her heart and rule out any new problems as the cause of these symptoms. The PDA is still closed and there aren't any new problems, such as back flow of blood through her valves.

So this means that everything happening is a result of the hole in her heart and now they have to decide how to move forward.

Our new plan is this:

Harper will only attempt to eat from a bottle once per day. The rest of the feedings will be given through her feeding tube to help her conserve as much energy as possible. We want the very most growth we can get the next few weeks and we don't want her to work at all. Eating from a bottle might as well be running a marathon for my sweet, little Harper.

They have started adding supplemental calories to my breastmilk to help her grow even more. She has gone from 18 calories per ounce to 24 per ounce and as long as she can tolerate it, they will try to get up to 30 calories per ounce.

We wait for a couple of weeks. Then, in 2-4 weeks, they will go ahead and do the major repair surgery to patch the hole in her heart. This news really took me by surprise, but a whole team of doctors met on her case this morning and all agreed this is the best course of action.

The exact time that they will do the surgery will be dictated by Harper herself. If she is stable enough to make it 4 weeks, then we will wait that long. If something just absolutely must be done in two weeks, then that's when we'll do it.

Of course, considering how quickly her energy level has dropped, there is a chance that something must be done even sooner.  Dr. Robinson mentioned the possibility of Harper ending up on a ventilator if she is too weak to breathe for herself.  If that happens before she has had time for adequate growth, then Dr. Robinson will go ahead with the PA band but, he really would like to avoid that procedure.

The whole thing terrifies me just because I thought we would have more time for her to get bigger and stronger before undergoing major heart surgery.  But at the same time, if we can get little Harper to grow and get through this surgery successfully, then the worst of all of this will be behind us so much sooner than we thought it would be. 

It's going to be a hard two months. I tear up every single time I think about Harper's tiny body having to endure all of this. I tear up thinking about how long it will be before I'm with my sweet husband and my sweet boys at home. All we can do is take this one day at a time and lean on our family, our friends, and most of all, our God who has certainly given us strength thus far.

Thank you for the support you've been to us. Every prayer, every comment, every phone call, every text...they help so very much.

Please keep praying for Harper. Pray for growth. Pray for stability. Pray for strength. Pray for comfort. She is such a sweetheart and I know that there are great things in store for her.

Sunday, April 17, 2011

Not This Time Either...

We were supposed to go home today. The doctors watched Harper for a few days on her new medication and tweaked her dose to get the best results and her oxygen saturation had improved enough that everyone was comfortable with sending us home.

But the past few days had really shattered my confidence. I just really didn't know if I even wanted to take her home, because she was still kind of borderline on her "sats" and it just makes me so nervous. So, they suggested that we "room-in" last night to prepare to go home today. So we packed up all of Harper's stuff and moved into the mini hotel type room to be on our own with Harper all night...kind of a trial run, with a lot of support near by if we needed it.

Harper has been getting a little more difficult to feed the past two days. We have to pretty much force her to finish her bottle. Well...last night, it just wasn't happening. No matter what we did, she was NOT going to eat. We tried for longer than we should be allowed to make her eat and when she wouldn't, they had to put the feeding tube back in and tube feed about 3/4 of her bottle. It was very discouraging. It happened again early this morning, so once again...we stay.

I'm disappointed, but much more than that, I'm relieved. I'm so glad that Harper decides to act her worst when the cardiologist is around or when we are about to go home. It just seems like things keep happening, at just the right time, to keep us here longer. There has to be a reason for that. I'm very thankful that we didn't go home on Thursday only for Harper to shut down and not eat for us. She's so tiny and she needs those calories so badly.

So her oxygen saturation is finally looking good, but now she's not eating, which is another symptom of the large hole in her heart. She is just too tired - her heart is working too hard.

You might have noticed that our plans are constantly changing and evolving based on what Harper needs at the moment. So after talking with Dr. Robinson this morning, here is our new plan:

Lab work was done this morning to check for infection and give us an idea of her general well-being. Everything came back normal. Dr. Robinson ordered another echo cardiogram for tomorrow to check and see if that PDA has opened back up, causing more stress on her heart. He also wants to make sure there isn't any back flow through her valves and see if everything else is working as it should. He also started her on another medication to help her heart pump more efficiently. She will keep her feeding tube in and we will continue to bottle feed her as much as she'll take, and then tube feed the rest to ensure that she's getting everything she needs. And we'll just watch her.

As Harper becomes more symptomatic, there is more talk of the PA band surgery which would be an intermediate step to help her heart not be under so much stress as we wait for her to get big enough for the patch surgery. If she has to have the PA Band, we want to wait at least 2 to 3 more weeks. She really needs to get a little stronger.

The good news is: none of this is putting a damper on Harper's fun!

This was Harper's sweet nurse the past three days. Her name is Lin and we all loved her. Lin, if you're reading this...looks like we'll be seeing you again this week.

Friday, April 15, 2011

Not This Time...

We were supposed to go home yesterday. I was completely filled with anticipation as we drove to the hospital for what was supposed to be the last time. We spent the entire day getting ready to be discharged. Harper had another echo cardiogram, she passed her car seat challenge, she got her feeding tube taken out, she passed the hearing screening, Dustin and I watched three training videos, I packed up all of Harper's things, we filled out paperwork, the monitor company came to the hospital to train us on how to use Harper's at home oxygen saturation monitor, and then we were all ready to go home...except we still hadn't seen Dr. Robinson. Our nurse called him to see if he needed us to stay and talk to him or if we could just address any questions we had at our appointment on Tuesday in his clinic. He insisted we stay. Three hours later, we were still waiting on him.

He finally came at 6:00 p.m. to talk to us. He started looking at Harper's oxygen saturation level and through her chart at her levels for the past week or so and he was visibly upset with what he saw. He just sat there for the longest time...not saying anything. He said she should have completely normal levels since she has acyanotic heart disease vs. cyanotic heart disease. She should not have such low oxygen saturation levels. He was certain that we would end up in the emergency room in the next few days.

The frustrating part of all of this is that I've been asking about those levels for a week now. I've asked the nurses questions and I've asked her neonatologist questions about it. Everyone told us that her levels were normal for someone with her condition...that it was to be expected for her to "sat" in the low 80's. There is obviously a breakdown in communication somewhere. I think the cardiologist expects other doctors to know as much about heart disease as he does, but that just isn't their specialty.

So...we stay.

I don't think I've ever experienced disappointment like I did yesterday. I'm disappointed for all of the obvious reasons: because I want to go home and be together with my family, because I miss Eli and Landon so bad it hurts, because I don't want to leave my tiny, sweet baby every single night, because I want to get some rest, and because we promised Eli and Landon that they would finally get to meet baby Harper and we got them all excited...and then we never showed up.

But more than all of that...I'm disappointed that my baby isn't well enough to go home. I'm sad that I've thought all of this time that she was doing so well, when in fact, she wasn't.

Dr. Robinson expected her to start showing some kind of symptoms related to the hole in her heart...he reminds us every time we see him just how large this hole is. He just didn't expect to see these symptoms so soon and that is concerning to him. Most likely, there is fluid building in Harper's lungs causing her saturation levels to be so low. So, he started her on medication to help her body get rid of fluid and we saw an almost instant improvement. When we went back to see her after shift change (the NICU closes from 6:30-7:30 a.m./p.m. for shift change), her "sats" were up in the mid 90's.

We don't really have a plan. I couldn't even ask the doctor questions yesterday because I knew if I opened my mouth and tried to talk, I'd turn into a crying mess. Maybe we'll have an opportunity to see Dr. Robinson again today now that we've processed everything.

Neva is bringing Eli and Landon to see me today. Nemo and Grammy are going to spend a lot of time with Harper this weekend while Dustin and I hang out with the boys and try to give them a little bit of normalcy among all of the chaos.

I'm disappointed, but I'm thankful that we didn't leave the hospital only to experience some kind of crisis at home. Harper is in the best place for her right now and I just have to have a little patience until we can figure out exactly what it is that she needs.

Thank you again for your continued prayers. We still need them so very badly.

Wednesday, April 13, 2011

Happy One Week Birthday, Harper!

We had another great day today! Harper continued to improve on her feedings through the night and the first feeding of the day today, she sucked the whole bottle down! She ate all of her bottles at all of her feedings today. Looks like she finally got the hang of it.

So the big news of the day is: WE'RE GOING HOME!!!

We have a few more things to wrap up in the NICU and we have to wait on the medical supply company to deliver her pulse oximeter monitor that she'll have to be on, but once those things are done, we'll be able to head home.

I am SO excited to have Harper all to myself. I'm so excited to be back home with my boys where I belong. I'm so excited to see my husband every single day. And I am SO SO SO excited for Eli and Landon to meet their little sister. I know they are going to adore her.

I took pictures of Eli and Landon to the hospital today to show Harper. I'm pretty sure she is going to like her brothers as well.

But with the good news, came some sobering news that was a harsh reminder that this isn't the end of life at the hospital, but merely the beginning. Harper's oxygen saturation is constantly being monitored in the NICU. This is the amount of oxygen being carried through her blood. It is measured in percents with 100% being perfect. Most healthy babies measure 99-100%. When Harper was born, her oxygen levels were that high, but over the course of the last week, they have slowly declined and now her levels are between 88%-92% and she drops down to the low 80's quite often.

 I asked the doctor about it and his explanation was this:

Harper is in a constant state of heart failure. It will gradually get worse and worse. She will start breathing more rapidly and labored, she will not grow very well, her oxygen saturation will continue to drop, and she will have to work harder and harder to eat as she grows weaker and weaker.

It was so hard to hear.

It's just that Harper looks so perfect and she's been doing so well this week that I almost forgot the big picture. Harper's heart is very sick and she will need surgery. I just can't stand the thought of my precious baby suffering like that. But I certainly don't want her heart to struggle either. And I know that just as God has brought us this far...He will be with us through the trying times ahead. He knows Harper and He loves her. He will take care of her and He will take care of us. And some day soon, my sweet baby girl will have a good heart and she'll be healthy and active, just like she is supposed to be.

In the meantime, I'm going to enjoy every single moment of the next few days, weeks, and months until we are back here for round two. We have been so very blessed and are thankful that we are going home so much sooner than we thought possible.

Please keep praying for little Harper. We'll see the cardiologist twice a week until he decides it is time for the surgery. I'm praying that Harper can stay stable until she can gain weight and strength, so that we are in the best possible circumstances going into surgery.

I can't wait to post a video of Eli and Landon with Harper for the first time! Stay tuned for what is sure to be nothing short of chaos as I begin life with three kids under the age of three.

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