Sunday, January 29, 2012

3 weeks in the hospital, seriously?

Yesterday was a tough day for our family. After finding out in the morning that they were planning to take Olivia's breathing tube out I made arrangements to be at the hospital the better part of the afternoon. Once before, when Olivia was in NICU, they had to intubate her after surgery. Finally, the day we hoped for--the day the wanted to take it out came. That day 2 hours after they took out the tube they had to replace it--she just wasn't going to do it on her own yet. (Actually, we got a call at 3am that next morning saying she took the tube out herself--something that happens relatively often in NICU and that she was doing great without it so they didn't replace it.) Unfortunately, it went about the same yesterday. Though I was prepared for Olivia to be re-intubated and emotionally ready to handle the situation I was sad to see it happen.

This is how it went: As soon as I got to the hospital they were talking about going ahead to pull the tube. They had been weaning her sedatives so she was going to be awake enough to do some work on her own. She had been breathing on a CPAP setting on the ventilator that shows them her lungs are ready to at least be on a CPAP mask if not her regular little cannula, or no oxygen at all. Right after they pulled the tube she looked great--breathing great without any help. Here is where the problem lies: not only the lungs have to be ready, but the throat. Her little throat was so sore from having the tube down it for so long that it restricted with inflammation after they took it out. Livi's lungs are ready to breath on their own, but her throat was too irritated to move the air down to the lungs well. Now she is on steroids so that when they are ready to try again, her throat should stay nice and open for her. It is protocol to wait at least 48 hours before trying again--its such a taxing thing for her. At the earliest they will try again tomorrow, though I imagine they might wait longer to make sure she is ready this time. She is doing well so far and her settings on the ventilator are still low.

We know she will get off the ventilator sometime relatively soon, we know she will come home to us after a while, but fatigue is setting in. We miss her more every day. Please continue praying for our family. We have great support and could not make it through this without so many people who love our family, but we miss our girl horribly. We are praying for comfort and peace for Livi all the time-- something we cannot even give to her, but the kind the Lord provides. It becomes more apparent everyday how little we can help her or even put her at ease. We are trying to rely solely on God (not family or friends or each other or the doctors) to provide the things that Olivia needs or the things we desire for her--not only when she is in the hospital, but all the time. Lord, help us.

Thursday, January 26, 2012

Remember the ramp?

Well, its coming. In case you missed it, here is the link to that post: original ramp post. For those of you who want a short cut: our awesome friends who work in construction have offered to raise $10,000 for us to tear down our old porch and build a new one with a wheelchair ramp attached so that getting Olivia in and out of the house is do-able. Please, please, please go back up and read the older ramp post. It contains all the information about the budget, how this project came to be, and pictures of what our porch looked like and the plan for the new porch and ramp. All VERY important information. There are a few things to update you on concerning this project, so here we go:

1. First of all, not really a ramp update, but an Olivia update. Things are about the same-- moving forward very slowly. She is still on the ventilator in ICU, but they are getting rid of meds and turning her settings down everyday, so we don't know when she will be either out of PICU or at home, but we are praying things continue to progress.

2. The work on the ramp HAS STARTED!!! We couldn't believe it, but last Saturday, 15 of our friends showed up in the bitter cold (I think the high was 30 degrees) to finish the first phase of the ramp project--demolition. After our porch was no more, they poured the concrete footings for the new porch. From what I understand, there will be 3 or 4 more work days before the entire project will be finished.

3. We have enough money raised to finish a large part of the project, but we don't have all $10,000. With the incredible generosity of so many people, we have raised $8,000 of the budget. If you or someone you know is interested in helping us raise the last of the $2,000, please read this letter from those responsible for the project to understand how to donate: ramp letter.

Thanks to everyone who is helping to make this happen for our family. Brian and I are driven to tears to think that people would be moved to help us in such a huge and practical way. With that said, a special thanks to the people in these photos, who froze their rears off last Saturday.

It even looks cold in the pictures, doesn't it?

Monday, January 23, 2012

Moving in the right direction

Sorry for the absence between posts on Olivia-- its hard to write something meaningful when there isn't any real change to update. But, now there is!!!

After trying the second time, Olivia was able to stay off the oscillating ventilator and be switched to the basic ventilator. They have been able to keep turning some of her settings on the ventilator down (slowly, but surely).  What are these mysterious settings I keep talking about? For those of you who care, they are the amount of pressure she gets from the machine to breath and the amount of oxygen she gets from the machine. It also controls her respiratory rate amongst some other things. After being taken off the oscillator they were also able to take her completely off the blood pressure medication they were having to give her as well as the paralytic. She is requiring more sedation now that they aren't giving her the paralytic because she is moving some (though she is still asleep) and that can throw the pressures off on the machine if she moves too much.

All these things are a wonderful move forward, but after an honest conversation with the doctor last night, while Olivia is expected to fully recover, the pneumonia is still very apparent on her chest x-ray and her stay will still be pretty significant from here on out in order to clear out her lungs.

Next? A post on the ramp. SO excited to let you all know whats happening!

Thursday, January 19, 2012

Really slow and reasonably steady

Thats how things have been with Olivia the past two days. We have finally seen her stop getting worse and now they are weaning some of the settings on her oscillating ventilator. The hope is in the next day or two she will be well enough to move to the other ventilator. From there the progression is: getting off of the ventilator onto some kind of additional oxygen, then moved to a regular floor, then getting off the additional oxygen, then home. The timing is anyone's guess-- including the dr.'s. We not only have to allow time for her to be able to breath on her own again, but to eat again (she is getting fat and sugar through her IV), have regular bowel movements, and get her off all those sedatives. Thats what I mean by really slow. We will not be home with Livi for quite some time now, but are SO encouraged by her progress, small though it may be. Thanks so much for your prayers and support. We will be needy and ask you continue those prayers. We are still not even close to out of the woods.

Meanwhile, we are still trying to have some kind of semblance of a life at home. Last week during the 60 degree weather I took Gabby on her very first walk. It was especially important because my best friend, Maggie, just had her daughter Abby (yes I know, Gabby and Abby) two weeks after Gabs was born. Here they are together bundled up in their matching hats my incredible mother made for them. Thanks, mom!

Tuesday, January 17, 2012

Feeling hopeful this morning

**I have attached pictures of Olivia at the bottom of this post. In those pictures she is on the ventilator and hooked up to a lot of tubes. If that is difficult for you to see or have small children looking over your shoulder you may want to take this into consideration.**

This morning Brian and I are feeling more hopeful about Olivia's recovery. The last few days she hasn't really seemed to get better at all, and in fact, often seems that she is getting worse. We know that because of the viruses we have to "ride the illness out" (which means they can't give her medicine to "fix it") but its hard to stay hopeful while waiting when your kid in having a machine breathe for her. Since she was put on the ventilator Olivia's settings on the machine have been higher than the doctors would like (which means she needs more assistance from the machine than generally they are happy with). This morning Brian just called and Olivia's settings are lower and now basically in what they consider the "optimal zone".  Honestly, she will probably yo-yo up from there again and come back down several times, but knowing she can reach a lower setting is giving us a little hope this morning for a full recovery. Thank you for your kind words and especially your prayers. We are definitely not out of the woods yet and still covet those prayers, but at least we have something concrete to point to as progress--small though it may be.

Even though Olivia is not only purposely paralyzed by this medication, but also sleeping all the time, we think its important to continue to talk to her and have her listen to music. Brian and I are excited that the Child Life department of the hospital has offered to record us reading books to Olivia for the nurses to play while we cannot be at the hospital. That way we can try to be present with her even when we can't be. So thoughtful.

Below are some pictures Brian took of Olivia yesterday. The nurses are so sweet to make her look like a healthy little girl by painting her nails and putting her hair up with ribbons. I told Brian on the inside Olivia is singing "You make me feel like a natural woman"...not sure he knew what to do with that. Here are the pics

Also, Olivia CAN have visitors in ICU if anyone is interested in coming-- we love having company. However, because it is intensive care, either Brian or I have to be present to escort you back to the room. If you are interested in visiting just let one of us know and we can let you know when someone will be in her room so you could come back. 
For the curious types--the tape around her mouth keeps the breathing tube from getting knocked around when they move her. They change it out everyday and clean around it. I know it looks weird if you've never seen it before. The patch on her forehead measures the oxygen in her tissues--she has one on her back as well. All those clear tubes from her mouth to the left side of the picture hook up to the ventilator and the small wire tubes around her head go from the medication pumps into a line in her neck (pretty much a long-lasting more stable IV). I may be partial, but even really sick, my girl looks great!

Monday, January 16, 2012

I got me some fiesty girls

So, update on Livi first. She is still stable and doing relatively well, though still "critical". Saturday night on our way to the hospital the nurse called and explained she wasn't doing as well that evening as the previous day as far as getting oxygen through her lungs, so they were putting her on a different ventilator. They have since switched her over to a ventilator that works differently (for those of you with experience, the oscillating ventilator) and she seems to be stabilizing on this machine better. To put her on that machine mostly they give kids a paralytic on a drip because it kind of shakes their bodies gently back and forth--hence oscillating. She is alseep and unable to move now because of the medication, which is nice, because I really don't want her remembering any of this when she gets better. Because she is out of it all the time, Brian and I are cutting back (a little bit) our time at her bedside. She will need us there more when she is awake, so we are trying to rest and be gone more, but it seems like the most unnatural thing in the world to leave your kid on a machine at the end of the day and try to do "normal" things. So, to recap, she is not really doing better in the sense that she has improved, but she has finally hit a plateau and is not seeming to get "worse" anymore, so we are pleased. I promise we will post a pic of this soon, but she is looking SO cute while she is knocked out: the nurses have put pigtails in her hair with ribbons (that get changed out every day) and multicolored barrettes AND hot pink nails. Until we get that pick up, you can gaze on this beauty from before the ventilator last week. This is what we like to call "gowning up" or "keeping your other little one from being admitted to the hospital too"

And Gabs, we have not forgotten you. Happy one month birthday last Saturday! I didn't put you in any cute onesies or have your picture taken by a professional. You're really lucky to be diapered and dressed lately, but don't feel swept under the rug by your sister's drama, we absolutely ADORE you too! You are hilarious and very definitive about your feelings. Your expressions are finding a wider scope but we can't always show people because you refuse to smile when you see the camera. You're still "small" but long and lean and I am so proud of the one fat roll you have in your mid-thigh. You're a great sleeper and an even better eater. You're starting to like hanging out with your parents more, which will disappear soon, so we're hanging onto that hard. We love you, doll. You are such a delight to us! Here are some pictures this week of "not" smiling when the camera comes out

Saturday, January 14, 2012

Finally, a decent night

Olivia had a much better night last night. No late night phone calls. No room full of medical professionals frantically rushing around to make sure she is stable. For that we are abundantly thankful. In other news, it is fun to see other people get to know the fighter that my kid is. Any time someone moves her to fix tubing, diaper, or anything else close to her, she is apparently letting them know that she is tired of laying in this bed with this tube down her throat. As a result, they need more meds to sedate her because she turns into wild woman, grabbing a tubing, trying to get out of the bed, etc.

Her chest x-ray still looks a little wet, so they are going to give her lasix today to try to pull some more fluid off of her. They are also keeping her sedation up so they can avoid the whole "bull-in-the-china-shop" affect. She looks comfortable and for that I am thankful.

I finally got some sleep...a lot of sleep. I got a room here at the hospital and probably got around 10 hrs of sleep last night. Somewhere Kelly is cursing me. I feel much better as a result. Missed being at home in my bed, but I figured with the way the past couple of nights have gone, it was a safer bet to stay here last night and avoid any drives through midtown in the wee hours of the morning.

Overall, while things could be better, we really are thankful for a lot of things. The outpouring of support and prayers for us and our girl has been amazing. THANK YOU for that. We find comfort in the fact that we have a great God who is in control and who promises throughout Scripture that he is with us. In fact, it is beautiful to see him promise that to his people from the beginning. Kelly and I are trying to do the Discipleship Journal reading plan to finish the bible in a year this year. Yesterday, I read in Genesis 31 God promise to Jacob that he would be with him and thought, "How beautiful is it that the God of the universe has promised his people that he would be with them over and over again throughout Scripture?" I mean think about it: the Creator and sustainer of life, the one who holds our very breath in his hands is mindful of us (Psalm 8) and promises to be with us (Hebrews 13:5; Matt. 28:20) and to be a rock and a refuge for us (Psalm 18).

We find rest in him and pray that you do as well.

Friday, January 13, 2012

Another Rough Night

So, it's almost 3am here. Kelly's dad had the first watch. He called about an hour ago, so I am at CMH now too.

Livi was having quite a bit of difficulty maintaining her sats, so they have now intubated her (which, Grandpa Don says she fought all the way. Typical for my kid. She is a fighter.). They are also placing a central line to monitor and to have better access in case they need to give her some meds (at times, peripheral IVs are about as stable as a house of cards in the wind).

I don't know much else to say. We'll keep you posted as we know more.

Thursday, January 12, 2012

Rough Night

So, many of you know this already, but we had a rough night last night.

I got home from work around 8:30pm and called Livi's nurse...she had a fever of 104.1. The weather was getting bad, so I stayed in and prayed.

I called again about 10:30pm...she had a fever of 103.3 and her breathing was increasingly labored. We asked them to call us if things got worse in any way.

About an hour later, her nurse calls...Livi has increased oxygen needs, could possibly need to have a tube placed to help with that if she gets worse. Her chest X-Ray looks bad. They are moving her to PICU. Then they say: "It would probably be good if someone comes to sit with her."

(In our heads:  What does that mean sit with her? Be there for comfort "sit with her" or be there for the last time "sit with her?")

I got out in the snow and arrived at CMH around midnight. Doctor says she doesn't look bad. She looks like she will rest well and they won't need to place a breathing tube...and then I exhale. A couple of brothers that I love a ton arrived to pray for Livi and our family and just sit with us.

Rabbit trail:  If you don't already know this, we are a part of the most beautiful expression of community that we could imagine. People are our friends here, but they function as our family. What Paul says in 1 Corinthians 12:26 ("If one member suffers, all suffer together...) really happens here. The brothers that came last night did all the support work that you could imagine last night...prayed for me, prayed for my daughter, prayed for Kelly and Gabby who were at home worrying and still awake. Then they went beyond that and called many of the people closest to us to have them check in on Kelly while I was away. It almost brings me to tears to think that if I had asked them to, they probably would have stayed here all night...end of rabbit trail.

It is 9:15am here. Livi slept well last night as did I in this amazing, plastic recliner that doesn't really recline. She stirred long enough to hold hands and know I am here. At least she knows that. I hope it brings her as much comfort as it does me.

We are thankful for all of you and covet your prayers. We will keep you updated as much as we can. Many have texted, called, etc. If we haven't responded to you, I apologize. We have limited emotional bandwidth today, so keep up on here, facebook, or twitter.

Here is what we are clinging to and praying since last night. I pray that you find hope and rest in this God as we have...

Psalm 121

[1] I lift up my eyes to the hills.
From where does my help come?
[2] My help comes from the LORD,
who made heaven and earth.
[3] He will not let your foot be moved;
he who keeps you will not slumber.

[4] Behold, he who keeps Israel
will neither slumber nor sleep.
[5] The LORD is your keeper; 
the LORD is your shade on your right hand.

[6] The sun shall not strike you by day,
nor the moon by night.

[7] The LORD will keep you from all evil;
he will keep your life.

[8] The LORD will keep
your going out and your coming in
from this time forth and forevermore.

Wednesday, January 11, 2012

A few days behind

Warning: no cute pictures in this post.

Livi is back in the hospital. We had to take her Sunday afternoon. She ended up having three different respiratory viruses and pneumonia. She is still having fevers as of this afternoon, so she is still contagious. I have been trying to make it up there at least once a day in between feeding Gabby and then coming home to shower and change clothes to make sure she doesn't get anything. I have been leaning on some fabulous friends to babysit and they have been so generous.  Brian is as awesome as ever and trying to wear a billion hats this week-- he is working, taking care of Gabs and I, and trying to be at the hospital for Olivia as often as possible. This whole two kids and one in the hospital thing is horrible. We miss Olivia so much. She isn't as "scary" sick as what we thought Sunday evening, but its a very uncomfortable sickness and will take some time to get over. Don't ask me how long--we never know. Everyone knows Livi makes her own rules. We would appreciate the prayers and thanks to everyone who is signed up to bring us food this month for the birth of our second girl: your generosity is turning out to be even more appreciated than we thought, unfortunately.

Friday, January 6, 2012

I made it!

I did. I made it through the first week of having both girls at home by myself. To be fair, Brian can be flexible most times with work when I need him to be. Like this week, when we played musical babies just so I could get Livi and her incredible mound of crap she needs into preschool. We're working on a better system, but I am grateful for my husband and musical babies.

Interestingly enough, I didn't go crazy, I got some (SOME) housework done, had a great week, AND it went SO INCREDIBLY QUICKLY! Wasn't it just Monday?

After sitting up to hold Gabby to sleep pretty much every night since she's been home, Monday we decided enough was enough. Let the crying commence in her own bed. Am I a bad mom? Maybe. But I've got to say, after one night of crying off and on we ALL get great sleep at night and she is in a much better mood during the day from sleeping so soundly. I realize that this is not the norm, and that she will backslide several times into wanting to be held all the time, but for now we are loving it. All four of us.

This picture must have been from the beginning of the week :)

In case you thought I forgot, I didn't: we WILL be posting a update on the ramp project VERY soon.