What a weekend

Today we had to leave our daughter at a hospital that is 2 hours away from home. Yes, I know it's the best hospital and exactly where she needs to be but that just doesn't make it any easier.

The last few days have been a whirl wind.  She's had a few episodes but when we left today she was stable and comfortable. The doctors at CHOP definitely have a different few than the ones at Morristown.  They're looking at a trach as a last resort right now. There are other things they want to try first. I'm not sure how I feel about that. I'd be extremely happy if she ends up not needing a trach but a part of me is scared they're just delaying the inevitable.  But they are the experts and I trust them completely.  Right now it looks like ENT will be able to scope her tomorrow or Wednesday. Once we find out what they see we'll know more of what her course of action will be. Right now we're taking it hour by hour and hoping she has an uneventful night.

Today we're just going to focus on Makenzie and make up for the time we missed with her. At some point we'll be out of this storm and all four of us will be home together.  Until then we'll just have to keep faith that everything will be ok!

CHOP it is!

Memorial Day Weekend was supposed to be a quiet weekend at the Crist House. Art and I planned to get things done around the house, to go see Kennedy and to have a camp out and go bowling with Makenzie. Well as usual Miss Kennedy had a plan of her own.

She had a bad week. I won't get into too much detail because right now Monday seems like weeks ago but she was vomiting alot and her oxygen levels went up over the course of the week. By Friday she looked like she was a little more stable but the nurse on duty that day told me that Art and I should prepare ourselves because most likely Kennedy would need a trach. When we had our meeting with her primary last Friday to go over her next steps he did tell us that a trach was an option but at that time it was so far away and the more research we did on it the more upset we got so we said we wouldn't think about it until we had to.

Saturday morning I received a dreaded call the the NICU.  Supposedly Kennedy had another vomiting episode and they had to extubate her to clean the tube out. When they tried to reintubate her the airways closed up and they couldn't get the tube back in.  The doctor said when they looked down her airways she could see the vocal cords and they looked fine but there was something at the end that was obstructing the tube from going back down. They were finally able to get a tube in but it was much smaller than she needs.  The doctor said an ENT doctor needs to come in and do a scope to see if there is something obstructing if he can cut it away or if she would need a trach. The doctors opinion after everything that happened today was she would ultimately end up with a trach.

When we got to the hospital we were told the scope couldn't be done at Morristown because the ENT doctor was out of town for a week and Kennedy couldn't wait that long so she was either being transferred to Columbia in NY or CHOP in Philly. Columbia was full but CHOP was available so they sent a helicopter up to get her. Art and I went home to pack stuff and make arrangements for Makenzie and then headed down to Philly.

Kennedy got settled into the NICU at CHOP and we got to meet her nurses and doctors. The plan is to get her settled tonight and let her relax since she had such a traumatic day and the ENT specialist will come tomorrow to check her out. Tomorrow we'll know alot more after the specialist takes a look at her.

My baby girl was transferred to a different hospital by helicopter...and she may need a trach. I'm just in complete shock right now. It's been such a tough day and I know the next few days it's only going to get harder. I wish I could switch places with her. I wish I could do all the hard work and take all the pain away. She has been through more shit in her 2 months of life than most people will go through in their entire lives. It's just not fair to her. But these were the cards that Art and I were dealt and we're ready to deal with whatever comes along tomorrow. As long as it gets our girl on the road to recovery and on her way home!

As usual, keep our Kennedy in your thoughts and prayers! She is so strong and amazing and I know she can make it through anything!!

Love to all,

The Crist Family

8 weeks old!

Happy 8 weeks Kennedy!  You're getting so big and beautiful with each passing day.  I love seeing your personality starting to come through. You are such a special little girl!

Here is the latest on Miss Kennedy.  We'll start with good news.  Kennedy continues to grow every day.  She's up to 37 ml's a day and has officially hit the 4 pound mark!!! That continues to be her biggest asset because the bigger she gets the stronger she gets. Her oxygen levels have continued to be around 25% and even down to 21% at some points during this past week.

My last post I said she had to be put back on the vent. This time she didn't fail because of her lungs, her airways were unfortunately red and swollen. When that happens air can't get in and the baby struggles. They didn't put her back on the conventional ventilator. They put her on the NAVA which allows her to do the breathing and predict when she gets support instead of the vent doing 100% of the breathing for her. So good news because she is breathing on her own, bad news because she failed again. Since this is her second time failing her nurse has suggested that we request for Kennedy to have one primary doctor who looks in on her every day and makes decisions for her. The group of doctors that are there are all very good but when a baby starts to show signs of trouble as Kennedy is now the nurse said it's better for her to have one doctor who is familiar with what is going on with her every day. So Art and I had a sit down with our primary on Friday to go over what the plan is for her. Unfortunately they think it's now her airways and not so much her lungs and that is harder to treat. The settings that she is on now are basically the lowest you can go on the NAVA so right now they're letting her grow. The bigger she gets the bigger her airways get and we're hoping the more open they'll be. So some time this week they'll start her on a bigger dose of steroids and try to extubate her again. If she fails again they're going to have to call a specialist in.  I won't even go into what her options from there will be because when I think about it I start to cry. Right now Art & I are focusing on this next attempt and staying positive!  I believe she'll do it this time! The doctor did say he's not going to be so quick to reintubated her if she starts to struggle again and see if she can pull through on her own.

This is a VERY big week for Kennedy! I know she has so much support out there and she really needs it! I will update when I can.

As always thank you all!!!

Xoxoxo

The Crist Family

Sleeping with a smile on her face

Back on the vent

Kennedy was put back on the vent. She was having trouble breathing again.  I don't even know what to say. I'm just devastated.

Lots of updates

There is a lot to catch up on from the weekend.  First, Kennedy has been doing amazing! She has improved so much over the past few days. She's back to 32 ml's on her feeds and is now up to 3 lbs 11 oz. If things continue to go well we're hoping she'll be 4 lbs by the end of the weekend! She has all her IV's out except for the one for the steroids. She's getting a 6 day dose of steroids that started Saturday. They've also been giving her a breathing treatment called Albuterol that has been like magic for her! They've explained it to me as it being the same thing as an inhaler for people who have asthma. Kennedy has chronic lung disease from being on the vent so occasionally her chest tightens up and it's hard for her to get oxygen into her lungs. This medication is like a mist and it opens her right up.  So between that treatment and the steroids they were able to remove her from the oscillator and back to conventional vent on Saturday. From there they've been able to continue to ween her vent setting down and she's been great with her oxygen levels, anywhere between 25-30%. Again,  great progress for someone who was so sick just 2 days earlier.

That brings us to Sunday,  her 7 week birthday and 33 week gestational birthday. Oh, and of course Mother's Day!  I received the best Mother's day gift from her, I was able to hold her and she behaved very nicely! It was so nice! She's getting so big and is just so precious and beautiful. I can't wait until she's home!  I'm going to pick her up and never let her go! She continued to do well the rest of the day. She stayed at 25% and they continued to drop her settings.  Late in the afternoon they were able to switch her to what's called the Nava. It doesn't breathe for her, she breathes on her own, but it offers her support.  The tube is placed near her diaphragm and if it detects that she's stopped breathing it gives her a breath and reminds her to breathe. They didn't take the tube out because they wanted to see how she did breathing with this machine first.

That brings us to today, Monday.  I called for an update this morning and the nurse told me she had a great night! She really needed no support from the Nava so she thought they'd extubate her today.

I'm here at the hospital now and as of 11:00 this morning Kennedy is officially off the vent!! They still have her on the Nava as a back up but she's doing all the work on her own! We're hoping and praying she can stay off the vent. She seems to be stronger this time so fingers crossed everyone!! She's doing well so far but this is a big week! If she can keep this up this will be huge progress for her! I will update when I can.

On a side note, I hope all the Mommy's out there enjoyed their Mother's Day!! I sure did and am very greatful to my family!!

What a difference a day makes

What a difference a day makes, a few hours make. That's the way parents in the NICU live. We're never safe, we're never in the clear. We just take it day by day, hour by hour, minute by minute. Arthur and I unfortunately experienced that first hand over the last 48 hours.

Kennedy is doing great! She's made such a recovery since yesterday. When we left the hospital yesterday her oxygen level was between 95-100% still. When I called at 10 to check up on her she was down to 87%. Not great, but going in the right direction. When I called at 5 a.m. this morning the nurse told me she had her down to 23%!! (21% is the lowest you can go. That is breathing room air.)Kennedy hasn't been that low on her oxygen since she was born! The nurse said her blood gases have been so good that they were also able to ween her vent setting down too. Art and I were shocked! I was hoping for them to say they got her down to 60%, maybe even 50%, but 23% was just fantastic!! I didn't want to get too excited until I saw it for myself so I got dressed and headed up to the hospital. Sure enough she was doing much better! Her color was good, her activity was good and her big beautiful eyes were open and looking around. Her chest x-ray looked good and the doctor said he thinks putting her on the oscillator really helped and inflated her lungs again and that's why her levels dropped so dramatically. The doctors in this unit are just amazing! The doctor that was on call all day yesterday came in to check on me today and told me he called all night asking for an update on Kennedy. He said he was so worried about her because for a time yesterday afternoon she wasn't doing well and he was really concerned for her. He's so happy with her progress today and he wants to take advantage of the great progress she's making on the vent. They're going to continue to ween her off the oscillator today and put her back on the conventional vent and continue with a 7 day dose of steroids. Their plan is to try to take her off completely next week. He said he wants her off because the vent is what is causing this damage to her lungs. The sooner we get her off the quicker her lungs will begin to heal.

I spent the day by her side just letting her sleep. Occasionally she'd open her eyes and look at me and start doing her normal arms and legs routine. Getting back to her usual feisty self. I left feeling so much better!

Thank you all SO much for all of your thoughts and prayers yesterday and every day!! It simply amazes me how many people care for Kennedy and are praying and cheering for her. Your prayers came through for her yesterday and Arthur and I are just so greatful for you all. She is truly the strongest person I've ever met.

Love to all!

The Crist Family

Good days and very bad days...

Today is a very bad day. One of the worse since we've been in the NICU. Kennedy took a turn for the worse, one that probably set her back about a month.

At 6:30 this morning I called the NICU for my regular morning check up on Kennedy. They told me she had a good night and that her oxygen was between 36-40% which is the norm for her. At about 9:30 my phone rang and when I saw "NICU" on my caller ID my heart dropped. Sure enough it was the doctor saying she needed to give me an update on Kennedy. They dropped her vent settings again this morning and she didn't respond to it well. Her oxygen requirements kept going higher and higher. They did a chest x-ray and it didn't look good. She had secretions in her lungs and they looked deflated. They put all of her IV's back in, started her on antibiotics, gave her morphine to calm her down and to relax her and gave her a blood transfusion. She made no progress for most of the day so they decided to put her on the oscillator vent again, the scary vent that makes her vibrate. They're still working on figuring out exactly what's wrong with her but she has impoved some. She was down to at least 92%.

Tonight is a very big night for her. She needs to show some more improvement and get her oxygen levels down! I know you've all kept her in your prayers but she could use some extra ones today.

My feisty girl!

Sorry I haven't updated.  There haven't been much changes. Kennedy continues to get bigger.  After she came off the vent she lost weight and was down to 3 lbs but she was retaining water so they started her on a diuretic which eliminates extra fluid. Once she got rid of the extra fluid she started gaining again. She's now up to 3 lbs 8 oz!

She's also getting stronger! Not only has she pulled out her feeding tube (twice!) but Sunday she decided to pull out her vent tube as well! I guess she's had enough of all the tubes, can't say I blame her!

She is still on the vent. Plan is to give her this week to build up strength in her lungs and give her another dose of steroids but over a longer period of time. They'll probably try to take her off again next week.

They still haven't lifted the flu ban so my hopes of being with both my girls for Mother's Day is looking pretty slim. At this point I don't know when it'll be. They say they're still admitting people for the flu so until that stops the ban is still on.

That's all the updates for now. Art and I are working on getting her room ready and I'm really enjoying that. It reminds me that there's a light at the end of this tunnel! Here's a little preview: