Tuesday, January 18, 2011

Endure All Things


We went back to the ER last night. Lily was holding her own on 1 liter, then went up to 2. Then needed 3 and that didn't seem to hold her. We called some friends who came and helped Zar give her (and I) a blessing. And then we went to the ER. I just felt like we should go.

Nothing was actually "done" to her. She was listened to extensively and that was it. We came home 4 hours later, but I'm glad we went. Here's why.

Last night I was at the end of what I could endure. I felt like I was watching Lily die, and I was terrified. I was afraid her pulmonary hypertension was getting a million times worse. I was afraid she was shunting blood all over the place. I was afraid we were nearing an "end of life" situation. I was right. And it's okay.

Lily is mixing oxygenated blood with oxygenated blood and sending it out through her body, so yes, her sats are going to be lower. This is because her pulmonary pressures are getting higher. Surgery would be unlikely to help, and it would be very risky and difficult and painful. Maybe meds might help, and we may give those a try. But she is comfortable and cozy, and as long as she stays that way, I'm okay.

We were advised to crank up her oxygen and just leave it. Don't even monitor her. (I can't do that, what with Ella turning the dial down, and the concentrator randomly turning off occasionally) but we turned down the limits. And once we got home last night, we all slept soundly.

We are going to go back in for another echo and make sure we are correct, and see what we can do to keep her comfortable. But at this point we aren't planning on taking any extreme measures.

Over the years, I have often said "THAT would be the WORST." I said it reading "Welcome to Holland" in my first week of Nursing school. I said it looking at clinical pictures of birth defects in class. I said it when I heard that a woman in our neighborhood was pregnant with a baby with no chance of surviving past birth, and she had chosen to carry to term. I said it when I was at an appointment with infant Charlotte and saw another baby her age on oxygen. I said it about kids who required feeding tubes. I said it, knowing it would happen to us, when I saw the obituaries of other trisomy kids I was familiar with. I said it when I read the story of a family who had lost one child, and then lost ANOTHER, to the same diagnosis years later. I said it when I thought about spending weeks in the NICU. I said it, over and over again, when I thanked GOD that Charlotte never had any (confirmed) seizures. And I said it again, after Charlotte died, when I thought of the alternative to her quick passing--that she would linger, and decline, and horror of horror, go into heart failure. And you all know what happened weeks, months, years after I made those comments. And what is to come.
I'm not going to say that anymore.


I would never suggest that choosing not to take heroic measures is the right thing to do for every family in our situation. In fact, many would consider it "heroic" to send Lily to the NICU that first day, or place a g-tube within weeks of birth, or have Charlotte get extensive skull surgery at 8 months. But those were all the right things to do for my kids, and I knew that going in. But this time, when the doctor said that surgery would be unlikely to help, and that her pulmonary hypertension is intrinsic to her chromosomal issue and not to her PDA I knew he was right, and I was somewhat relieved. As much as I want the miracle surgery and the short, precious, magic years with a sweet and perfect child with special needs, this time it's not meant to be. And I know that this...this isn't the worst.


22 comments:

The Boyds said...

Hi. I'm a lurker. I hope you don't mind.
I just wanted to say that I think you're amazing and that your children are beautiful.
I wish all the best for your family.
Cushla xx

Monica said...

This may come across wrong, but what I really want to do is say "Oh, Sweetie" and put my arms around you and cry for the impossible situation you are in, cry for the fact that you've been there before and it's being asked of you a second time, cry for our girls - mine and yours, that earned their angel wings way too early and cry for our girls - mine and yours, that we have to watch knowing that they will also earn their wings as incredibly young, beautiful human beings.

Cristina said...

My thoughts and heart are with you, Zar, the girls and especially sweet Miss Lily. Sending you love. Please let me know if there is anything I can do.

whatever to us said...

In our thoughts and prayers- wishing you all peace throughout Miss Lily's journey, however long it may be...hugs.

TherExtras said...

Grace and peace to your family. More grace and peace. Barbara

katherine said...

oh erin. i want you to know that i just love you. and i admire you and zar for being so amazing and strong. thanks for sharing everything with the rest of us!

God speed.

Lacey said...

Sweet baby Lily, perfect in every way, down to her little, curly fohawk! She looks like Charlotte more every day!
You are such a strong women, and I admire you so much. Love to you, Zar, and your beautiful baby girls!

Renee said...

Every time I read your blog, I say a little prayer for you, Zar, and your girls. (all 4 of them!) I am always touched by your words and in my heart, I thank Heavenly Father for your example, courage, and honesty. Please know that you are again in my prayers-for whatever the future holds for your amazing family. I feel honored to know you even if it is just through your blog and Zar's parents. You've enriched my life and touched my heart. God Bless You All!

Julie said...

Erin,

I am so thankful that you keep us updated on this blog. I don't always comment as I don't always know what to say. Though I have never met Lily in person, you have helped us get to know and love this precious little girl! I thank you for that. I thank you for sharing your life with us. Tonight I have shed many tears and am praying for you and your family!!!! Love you all!
Julie

Anonymous said...

I too am a reader of your blog. I came across it just as you had Lily. I am sure there are many more of us out there....anonymous readers whom you will never know even read your words.

My heart breaks for you, but it sounds as though you do know what is best for your children....and you have to make peace with that.

My thoughts and tears are with you and your family.

Amanda said...

You are an amazing mother and no one can ever question that you always do what is best for your family. The incredibly difficult decisions that you are making are ones that no one should have to make and you are faced with them twice. I know that you have help from above every single day. And I know that Charlotte is going to be with Lily, comforting her, through this next stage. I love you and Zar and your beautiful girls.

Anonymous said...

What a gorgeous photo of Lily! It is very reassuring to know that she can be comfortable, and looks comfortable, and bright. You have done the very, very best anyone could do with these precious babies, explored every avenue, studied and prayed and given it your best. No one in the world could have had better parents. And you have so many prayers being offered in your behalf to hopefully sustain you and be of help. May you continue to feel peace, and joy, and love and the wonder of these sweet spirits that have so blessed your lives.

Much love, Carolyn H.

AussieJenn said...

I'm thinking of you and your gorgeous littleone - Lily. My thoughts are with your entire family. I wish you peace and strength...and loving arms around you....

ANewKindOfPerfect said...

What a beautiful picture of Lily. She looks so peaceful. I am glad that you have a plan in place to keep her comfortable. I only wish there was a magical easy cure. Your strength and acceptance is a blessing!

Our Family said...

Erin, you honestly are amazing everything that you go through and your trials and the way you seem to handle them and know that it is HEavenly Fathers plan. Shirlene

Kathy said...

What sweet, dear, and strong parents you and Zar are. You are a blessed couple who told God you would have these perfect spirits in this life to be yours forever, in the next life. Lily is so perfect and Charlotte is as well. The same can be said of Ella and Ava. Charlotte was so perfect she needed to go home. Lily is proving to be as perfect. I am blessed to have spent some time with you and Lily in the hospital; it brought back so many special moments and hours I spent with my Katarina Rose, before she left and afterwards. She to was too perfect a spirit to stay, what love we learned from her and that our Heavenly Father knows each of us and our endurance levels. He also knows when to bring his precious spirits home. You and Zar are such a strength to me and I would love to pray for your little family. What a sweet soft face Lily has. A sister is common, Kathy Irwin

{ Bethany } said...

That is such a sweet picture of Lily. I don't have may more words than that. Its just hard thinking about these things. :'( I'm so sorry, Erin.

~Bethany

Anonymous said...

I came across your blog reading the blog of a mother whose "angel baby" I had the honor to help care for when he was in the hospital, so I hope you don't mind.

I normally wouldn't comment but after reading this post I couldn't help but comment. You are a completely amazing women! And from what you say about your husband he is just as amazing. God has blessed you so much and you are so thankful for those hard yet beautiful blessings he has given you. I pray for you, your husband, and your beautiful girls, all four of them! I hope to one day have the strength, grace, power, and love to handle anything life throws at me like you do. In my eyes you are a true hero and one of the best mothers I ever seen! I just wanted to share that with you.

Alisa said...

Very well said Erin. You are amazing! What a blessing to keep a journal of these events for your daughters and future posterity to read. They will know their Grandma Hayes as a woman of incredible faith and strength.

Becky said...

I have read this a few times over the past couple of days...just didn't really know what to say. As always you amaze me. I love the way you trust in the Lord. May your time with Lily be as long as it's supposed to be. Supporting you all the way across the states - although I sure wish I was closer so that I could hold her. Love you!!! xoxo

Kelly @ Sufficient Grace Ministries said...

I am amazed by your mama heart....and even as I write that, I'm guessing you're thinking what I think when people say things like that to me. You know...the things like, "I could never do that" (as if we have a choice whether to live through losing our child or not) or like you mentioned: "That would be the worst". No one asks us before we're walking in that place....and we really don't know what we would do unless we are walking there. I have often thought of what life would have been like with my micro-preemie twin daughters had they survived with all of their special needs. But, I can only imagine. I haven't walked there. I haven't, but I was willing. You...where you are walking....it is sacred ground... a place that leaves me humbled beyond words and amazed at your mama heart. I wish I could say something more meaningful and profound...but for once, I am at a loss for words. What I can do is promise to pray for you...that you would feel God's arms around you, carrying you when you are too weak and tired to take one more step...that you would know that you are never alone on this incredible journey....and that His grace would be sufficient for every moment you face.

Thank you for sharing this...thank you for the courage and love you display everyday....thank you.

And, God bless and keep you and your beautiful family. I am honored to have met you...and honored to have shared in the telling of our stories in The Gift of Time.

April said...

Oh Erin... There are no words. My heart aches for you...you are in my heart and prayers always.