Longer Update

Yesterday, as those of you who follow me on Twitter may have guessed, was a rough day.

Wednesday evening Blaise was off oxygen for five hours, then stayed on only 1/8 liter overnight, and yesterday morning I was feeling very hopeful that we'd be able to take him home by the evening.  Then a talk with the pediatrician who is currently in charge of Blaise's care made me realize that my expectations about what Blaise's numbers need to look like before we can go home were a little unrealistic.  I'd been hoping for no more nights in the hospital, and suddenly had to face the fact that only two or three more nights would be a best-case scenario, and four or six or eight more was not out of the question.

(For those of you not counting along carefully at home, tonight will be the ninth night we've spent here.)

I've been having a hard time since Blaise was born, and especially since he's been hospitalized.  I feel like I've spent his entire life either (a) being afraid he was going to get sick, or (b) dealing with him being sick.  I get stress stomachaches; I have zero appetite; I'm sad because I'm not enjoying my little son's newborn days the way I'd like to be doing.  Not surprisingly, I cry often.

But yesterday morning sent me into a tailspin.  I could not stop crying all day long.  I kept trying to get it under control, kept trying to pray harder and think more reasonably and get a hold of myself, but I could not do it.  By the evening, after Bryan and I had eaten Thai food that tasted to me like cardboard and started watching a funny movie that felt to me like a bitter reminder that other people get to live lives outside the hospital, I admitted to him that I thought I needed help.  Nothing extreme, just someone to talk to who wasn't also going through this stressful time.  The nurse happened to pop her head in at that moment and catch me bawling, and offered to call a social worker for me.

So after Blaise's next feeding I walked downstairs and spent an hour talking with a social worker.  And it was really good.  She listened to me, showed me that I was not indeed collapsing but in fact having a normal reaction to a crisis situation, and helped me to strategize ways to arrange the things that are in my control so that the things which are out of my control would not seem so overwhelming. 

I came back up to our room feeling much better equipped to make it through the rest of our time here.  And this morning I started making plans for how we're going to deal with it if/when we are still in the hospital on Monday, because that was being one of the main stressors for me: imagining how we'll manage all this when Bryan goes back to work, which he absolutely must at the beginning of next week.  We've got a plan in place now, and it helps.

There are social workers available every day and I'm going to be talking with one daily for the rest of our stay here, to get some much-needed extra emotional support.  I'm giving myself permission to grieve, especially about the fact that these precious newborn days with Blaise have been so disrupted by his illness, and about the normal family life that we're missing during this time.  I am focusing as much as possible on the good things: that Blaise is not seriously ill, that we are blessed to have such a healthy family in general (being at the children's hospital has really driven home that reality to me), that our time at the hospital is finite and that we are nine days closer to the end of it than we were when we got here.

And most of all, of course, I am praying for grace.  For the grace of healing for my little baby Blaise, for the grace of resilience and peace for Camilla, for the grace of strength and perseverance and peace for Bryan and me. 

Today was a much better day for me, and I have confidence that I will make it through the rest of our time here - whether it is two or four or even eight more days.  Yesterday I was not sure I could, so that is a big step.

As for Blaise, he continues to improve very slowly.  The only thing they are still doing for him is pumping oxygen up his nose.  For days now he has been on 1/4 or 1/8 of a liter.  When we take him off the oxygen he does fine when he's awake, but his saturation levels dip when he is asleep and it's not safe for him to go home while they're still doing that.  I know we are seeing improvement because a few days ago he couldn't keep his levels up even while awake, but it's frustrating that it's happening so slowly.

The doctors have two things to say about this: one, that it's normal for tiny newborns to take a long time to recuperate because their bodies simply aren't very strong yet, and two, that it often happens that babies will need oxygen for quite a while and then very suddenly not need it any more.  Those things are reassuring to know.

I'd been feeling disappointed that God wasn't granting the healing for Blaise that so many people were praying hard for.  But it occurred to me yesterday that perhaps He has been.  Blaise's condition could have been so much worse - the doctor told me about another newborn with RSV who is in the pediatric ICU on a ventilator - and we've been really blessed that he was never in danger and is recovering on his own.  It is a mercy that my greatest source of worry and stress during this time is nothing worse than the trial of having our family split up.

We continue to need your prayers every minute, of course.  I can't tell you how grateful I am for every one of you who has prayed and thought of us during these difficult days.

Comments

[Amy F]

I've been praying and will continue to do so.

I spent 7 days in the NICU at Peter's birth and 3 with Leo, both because they weren't breathing well enough. I remember hitting day 6 with Peter and just falling apart, convinced we were never, ever leaving, he'd never figure out how to nurse, and my whole expectation of motherhood had been thrown in the toilet. Two hours later, he figured out how to eat and it felt like a different world.

I wish I could give you a hug. Someday you'll be out of there and your family will be comfortably together at home again.

[Kate P]

Keeping up the prayers. One day at a time! It stinks that you are so stressed out, but we all see how much you love your little guy. We're pulling for him.

[Lori]

We will continue to pray, Arwen. I think you are exactly right to grieve - don't feel bad that you feel bad! May God bless you and your family !

[Therese]

My heart and prayers go out to you and your family right now. I wrote a comment earlier this week about my son who was critically ill for the first year of his life (and who is now a perfectly healthy 14 year old) Jacob was on a venilator and it was very scary. His first year was rough for us, not only because of his illness, but because my Mom, my best friend, passed away during that year as well. We had three little ones at home, so we could not be all together as a family for any length of time. Then something happened that made a difference...we had a visit from a priest, Fr. John, who was the Chaplain at Children's Hospital. He asked if he could anoint us. I remember thinking, "Why us? Baby Jacob is the one who is so sick!" Father said, "Anointing isn't necessarily about curing, but it IS about healing...and right now, you need healing." So he anointed us and prayed for our strength and courage and for God to give us grace. And He did. In fact, it brought incredible strength and peace to us, and I believe that is the reason we were able to make it through that tough time.
I will be praying the rosary for you, because I know that Mary understands the heart of a Mother who has to watch her child suffer.
You do so much for God and you carry your faith to others...now let your Faith carry you. God bless you.

[Betty B.]

We'll keep praying, Arwen! I can only imagine how hard this must be for you all. Be sure to be kind and patient with yourself. Your response to all of this sounds completely normal. Hugs!

[CJ]

I am going to stop noodling around on the internet and finish the rosary I am offering for your family. Take good care.

[KatieButler]

Thinking of you all, and praying for strength, grace and healing for Blaise.

[Tracy]

As you may remember, my daughter was born a bit early and was in the hospital for 17 days after she was born. I was thinking about that time today. The early days were very hard in that we were terrified because she was in critical condition and on a vent. etc. But I handled those days pretty well. I didn't fall apart until day 7 of the days of wondering WHEN she would get off the oxygen and off the supplement and would we ever go home? I remember that there were several days of only 24% O2 (room air being 21%). And she just could not get off of it. And then I fell apart. That was probably about day 13 or 14 of the stay, and about day 8 of being in a crib, with just O2.

3 or 4 days after I fell apart, she went home. All of a sudden, she didn't need the O2. And we did all the stuff you do with premature babies who are leaving the hospital and the next day I took her home.

It was sudden in the end, which startled me.

I think it's the not knowing and the endlessness of it that finally did me in. She was doing fine and was going to be fine, and I could fall apart.

Anyway, I've been in a similar place - not the same one you're in, but it's why I keep praying with intensity, and repeatedly, thinking of you and Blaise.

[melanie]

Arwen,
Reading this is like reliving the days spent in the hospital with my twins when they were born 2 years ago. I was so torn between my other children at home and being at the hospital, and then being mad at the doctors for not letting us leave and feeling angry and the stupid sp02 levels. I feel for you so much right now.

What God showed me was that I had to live literally one minute at a time. Not worrying about the future (yeah right! I know it's hard) but trusting that he will give me the grace to live THIS moment, and that he is taking care of the rest of the family while you are needed at the hospital.

The next moment hasn't come yet, and when it does, there will be grace for that one too. It calls for an intense surrender to whatever situation God has allowed for you. It's so hard, but you will grow in so many ways and be so much stronger when you come out of this. I know you will! you are doing an amazing amazing job. I spent many moments sobbing in the waiting room, staring at all the smiling happy people. Wishing I was snuggled in bed with my newborns too.
And hating the fact that I was wasting my husbands vacation time while being in the hospital.. knowing that i'd have to go back home and not have him there. I remember like yesterday.. but we got through it, and God took such good care of us. Don't turn down any offers of help. Anyone who calls to offer help, promise yourself you'll just say YES! I swallowed my pride and let people help and it made such a difference... and it helped them learn to be charitable and give of themselves too!!

Anyways, enough going on... I'll pray for you tonight. I know how hard it is... it gets easier.. i promise.

[Elsha]

It's good that you have someone there to talk things through with. I'll keep praying for recovery for Blaise as well as for strength and comfort for you and your family.

[Annika]

I am keeping you all in my thoughts and in my heart, hoping for a healthy baby and a peaceful mama.

[owlhaven]

Praying for your sweet family!
Mary

[Elizabeth]

I am sending you all my best prayers. I can't imagine how difficult all of this must be. My heart just goes out to all of you.

[Kate Cousino]

Praying. I've been thinking a lot lately about the 12 days Pascal spent in the NICU after he was born, and I will probably blog a bit about it in the next couple weeks. It was hard in ways I didn't understand or expect. You are fortunate to have made contact with the social worker and you're doing the right thing making plans to speak with them regularily. I didn't have any of that, and I think that is the one thing that could have made a positive difference to my experience - to have a liaison with the hospital who could help me understand and stay on top of what was going on and my own responses.

The best comfort I can give is that when you have your precious baby home again, these days will soon fall far behind you and seem like a bad dream. Life recovers it's normality so quickly, thank God. :-)

[Pigwotflies]

Thanking God for social workers!
I will continue to pray for all of you.

[KidKate]

Good for you for getting the help you need! Your post had me in tears. Hope you are feeling a little better now.

[Patti]

Hi Arwen,
I'm coming out of lurkdom because I felt the need to respond to your post. I'm glad that you're getting support from the social workers at the hospital, and that it's making a difference. I was wondering if you had considered also talking with a chaplain? I'm a hospital chaplain, and I have spent many hours listening to and praying with patients and families in situations like yours. If there is no Catholic chaplain on staff, they should certainly be able to arrange for a priest, nun, or Catholic layperson to visit you. Of course, even a Protestant chaplain (like me) would be more than happy to minister to you, too. I've spent plenty of time with Catholic patients and families. It's a matter of what you're comfortable with. I will continue to keep all of you in my prayers!

[Maren]

I have been thinking of you and your family often. Thanks for keeping us posted. Please accept my fervent wishes for your health and Blaise's speedy recovery.

[Nancy from Indiana]

Thanks again for updating us, Arwen. We are thinking about you and your family and continuing to hold you in prayer.

Patti's post above was almost exactly what I was thinking. I think that was a wonderful idea of you to make contact with a social worker and arrange for continued support from them. Sometimes when you are overwhelmed, it's hard to know how to ask for help or what help you need, but you were so wise to do that!

I would definitely make contact with the hospital chaplains - they can be a real blessing. I bet they can arrange for someone can bring the Eucharist to you, if that isn't being done for you yet. Does your parish know Blaise is in the hospital? Because of confidentiality, the hospital can't notify your parish, so you or someone in your family needs to tell them. Maybe your priest can visit and bring communion or pray with you.

I am so impressed with your strength and courage and know you will make it through this with God's help.

[Mary]

Arwen,

I read you on Faith and Family and have been praying, praying, praying for your family. I have a daughter Camilla's age and a son who is nine days older than Blaise. I can only imagine what you are going through right now. Hang in there. I think you are probably doing so much better than you even realize.

[Mary]

One more thing... During my first few days home with my son, I was really struggling, and I made myself just focus on getting through one feeding at a time. I wouldn't let myself think past his next feed, and then I would congratulate myself on every one I made it through. I know Blaise is not having breastfeeding issues, but it is a small unit of time that feels much more manageable than, say, 4 to 8 days.

[Dooneybug]

Hang in there Arwen, there are many prayers being sent up for your family. Thanks for keeping us updated. I hope you can regain all your strength soon (and don't forget how those postpartum hormones like to reek havoc on us)!

[Laurajean]

Arwen, I read you on Faith and Family. I had two babies who had troubles newborn time, and I remember one thing my midwife said: "I know you don't believe it now, but in a while, when it's all over, you'll hardly remember it, and it won't make a bit of difference." I didn't believe her, but she was right. I was shocked when a year or so after one of our baby's birth, my DH HAD in fact FORGOTTEN all our "traumas" -- he had to be reminded of it all. Don't mourn for what you are missing with Blaise, rejoice with what you have (uninterrupted time with him!). Camilla will also bounce right back. And remember, you are also still newly postpartum -- lots of hormones raging! This too, shall pass (but I will pray that it will be sooner rather than later!) God bless you!

[Michele]

Our prayers are joined with all those above, and many more besides. He IS getting better, he WILL be healthy, your prayers ARE being answered! Lots of love ... And Laurajean I think you're right. I can barely remember my first daughter's three days in NICU, with tubes in her lungs and everything.

[Lisa]

I can't imagine how frustrating it must be for you now. It's good that you are regrouping now, and I'm glad you are realizing that this hospitalization time won't last forever, and every moment that passes is one step closer to going home. I'll pray for your family.

[Ellen]

I'm so glad you are meeting with the social workers! The ones we have in the NICU at my hospital are wonderful.

Randomly, I've been taking care of babies with RSV all week. We have a baby in the NICU who has it and I took care of him, and then I floated to our pediatric ward one night and had a few little babies with RSV. It's been a constant reminder to me to pray for your family. Hang in there!

[mary]

Praying for your family, Arwen. He WILL get better and you WILL be going home.

[Janet]

Dear Arwen,

Praying for you and your little Blaise (and the rest of the family). I recently lost a baby to miscarriage. I'll ask her to pray for Blaise. I hope you get to go home soon!

[Becki]

I am so glad you are getting some support from the hospital social workers. This is an extraordinarily stressful time, and you have every right to grieve for the very real loss of those healthy at-home newborn days with Blaise. But as you have come to realize, this too shall pass--not a lot of comfort, but something to hang on to. All you need to do is hang on and get through. And while I can well imagine that Bryan going back to work will bring its own stress, it's a blessing that he has a job to go to.

Please remember that I am not terribly far away, geographically speaking, and it would give me great joy to do anything to make your life easier right now, from bringing a few dinners over for you to running errands, to whatever you might wish. Message me on FB if I can help, and remember that I wouldn't offer if I didn't mean it.

[Erin]

I continue to pray and think of Blaise often. I can only imagine how difficult this is. I was in the hospital with my son, Ryan, when he was 5 months old, for 3 days for a similar illness, and it felt like an eternity. You are being so strong, really.

[Kate]

Arwen, thank you for this beautifully honest post. So often us moms feel like we have to be the brave, strong ones. We're so afraid (or at least prideful I am) of admitting that we may need a little help, that we're feeling overwhelmed, that the tears won't stop coming.

You have every right to cry and to feel the way you do. It also shows what a woman of faith you are that you're able to ask for help, to lean on social workers, your husband, and most of all, on God.

You're an inspiration, and my prayers continue to be with your entire family.

Blessings,
Kate

[Cassie]

I'm mostly a lurker, Arwen, but I just wanted to speak up and let you know that I've been praying for your family. I'm so glad you spoke to a social worker about how you're feeling. Having a newborn is hard enough as it is; I imagine having a sick one just heightens all of those emotions even more. To me, you seem so strong.

[Pippi]

You're so wise to look for help and support! It is hard right now, and you need it. Like so many others I'm still thinking of you and your family and hoping for a speedy recovery and peace for all of you.

[Charlotte]

I'm still praying! I'm so glad that Blaise's condition is improving.

[Tracy]

room air! Room air! praying for room air!

and for TODAY. What an exciting possibility!

[Slim]

Welcome home!!!!!

[Sarah in Ottawa]

Just saw the most recent Twitter -- hooray! What joyful news!

[Laura]

So glad to hear you are home. And I'm so impressed that you were able to recognize that you needed help and to ask for it. You are a wise and humble woman, Arwen. I will continue to keep your family in my prayers-- I'm sure these next few weeks will bring their own challenges as you settle into a new routine at home. Peace to you and your family.

[Robyn]

So glad to see your Twitter update! Tears of joy for you all. I hope you're all getting to enjoy your own bed for a nice long nap several times a day.

[Ted]

Praying for a speedy recovery! You're right -- each day is one day closer to getting home.

[Jen]

I'm delighted to see that you are home now. (Twitter, of course.) I hope you get some smooth sailing now to make up for the rough beginning.

[parodie]

I see (from Twitter) that you're home. Hooray! I hope you are enjoying being with both your children (!!) and snuggling that adorable baby of yours.

[Nancy from Indiana]

Welcome home! Keep taking good care of yourself as you're caring for your two wonderful children and let other people help you out whenever they offer. Continuing to pray for you and your family.

[Kira]

Oh, sweetie. I just read your update over on your Twitter page, and I'm just weeping now. You are such a beautiful picture of grace in the storm, and my prayers are with you all. Thanks be to God that you are home at last.
My niece is right now in Children's Hospital, in the intensive psychiatric ward. I just got the news that she'll be released on Wednesday. Like you, I'm shaken by my time spent there, by how very hard some people have it. I want to make our girl better, I want God to fix it, fix it now. I want.
I'm going to try to focus more on what God is doing than what I want. Thank you for the reminder.
And the cry.