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.


D'Ann said...

Amy, I know your heart hurts and is very sad you didn't get to come home. You are a courageous woman and God has filled you with an abundance of courage and the ability to handle situations and know everything is in His hands. Sometimes we don't understand what is being dealt to us, but hang on to your amazing faith and your amazing family and friends will carry you through. Lovwe all of you and will be thankful when you get some answers.

Bethany said...

Oh Amy, I'm so sorry! I'm glad you were able to see the doctor before heading out...what a display of God's grace! I can only imagine your mommy heart just yearning to have all your littles happy, healthy, and home together. May He continue to strengthen you and uphold you! Love and prayers, Bethany <3

Ophelia said...

Amy, Harper is in the best hands possible and she is always in my prayers. Thank you for update.

Kristin said...

Sorry to hear about the set back. I broke out in tears reading this blog. But you know she is in the best place she can be right now. She will be home soon. I will continue to keep ya'll in my prayers for her to get well enough to come home. Ya'll are doing a great job and she is just so adorable. Glad to hear that she is eating better. Talkt to you later. Thank you very much for keeping us all updated on how she is doing. I really appreciate it alot.

Fiona said...

Amy and Dustin, I cannot tell you how our heart goes out to you during this time. It must feel like a rollercoaster of emotion. Difficult, difficult times but I want you to know that you are not alone that there are many, many people here who love you and are praying for you and your little baby girl. You will come through it because that is all we can do - we just hang on in there and do the best we can and God fills the rest in for us. I pray for peace for you and sleep because you will need it.
We love you. One day at a time.
Bruce, Fiona and Jessica

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