Curve Ball

True to form, plans have changed!

On Monday they did a sputum culture because when they suctioned her the mucus that they suctioned was a little not normal. So…today they started her on antibiotics just to be safe. Because she has a breathing tube in her and it’s plastic, bacteria LOVE plastic so she is susceptible to infection. They are going to watch her vent settings over the night and as long as they stay the same or get better she will be extubated.

Last night her nurses moved her into a big girl bed and into a different “pod”. She is now at letter G. They also gave her a full tub bath to make her feel all clean and yummy since she was moving beds.

Advertisements

36 Weeks

36 weeks.
That is how old Taryn is gestational. I can’t believe I should still be pregnant and waddling around right now. Instead Taryn has been alive 79 days and she is 11 weeks old.

As I was leaving the hospital today I started thinking about how old she is. And then I started thinking about when she will be able to come home. No one talks about it because she is a curve ball thrower, and it seems when we get a plan in place she changes things up. But I wonder if in 4 weeks she will be able to come home. I doubt it, i think more like sometime in November. Right now its ok that she is in there, she is supposed to be there, but once her due date comes and goes I know I will have to work to contain the bitterness I will have. Because after her due date the NICU will be stealing MY time. It’s so awful to think like that especially because they lover her so much and they are helping her get better. But, as her Mom I seem to have rationalized that its ok Taryn isn’t with me right now because she should still be inside me growing and isn’t, so the NICU has to help her. But once her due date hits, she should be mine, mine, all mine…or so my heart thinks.

The current plan: (If Taryn doesn’t change it)
Tonight she was moved into a crib, and a little closer to the door to go home! They have noticed she is done with the plastic box! She kinda would get sad when they would lower the top and happy and interactive when they would raise the top. So, we bought her a mobile which she really likes to look at and this move to the crib should give her more stimulation and help her developmentally.

They are going to start her on the steroids again, and hopefully extubate her on Friday and put her on the CPAP. They will continue to give her the steroids for a while after they extubate to help her out and hopefully get her over the hump on the CPAP.

They are going to wait till Friday for a couple of reasons one of them being that her “Auntie” Patricia will be working that day and since she is her primary nurse they wanted to make sure she was there to be part of the celebration! –I LOVE our NICU!!!! They are so amazing and take care of Taryn so well and they all have invested so much into her. Ben and I couldn’t be more blessed than to be going through this with the support of all these amazing Nurses, RTs, and Doctors.

We need to be praying for a few things:

>That her body stores up a reserve of strength to help her come off the ventilator.
>That this extra dose of steroids helps and there are no negative side effects from them.
>That she excels on the CPAP and will never need the ventilator again.
>That her growth starts to increase. While she continues to grow, she is in the 1 percentile for weight, length, and head circumference. In other words she is tiny and needs to get bigger!

❤ BJTO

Bye bye infection!

1 week makes all the difference! The infection has been kicked and she is actually waking up during the day instead of sleeping all day due to exhaustion. She is requiring high – mid 60’s of oxygen and she sat’s in the high 80’s. (all good).

As of tonight she weighs 1350 grams. 10 more grams and she’ll be 3 lbs!!!!!!

*sigh* I can finally go back to day dreaming of her being home with us. Being able to give her baths, rock her, feed her, cuddle with her WHENEVER I WANT, sleep with her in our room. Just simply being a family of 3 all under one roof! We are going to start her room this week. We have walls to paint, carpet to clean, drapes to hang and a crib to assemble. Her dresser and rocking chair won’t be here till mid-late October, but that’s fine because she won’t be coming home till (I think) early November. The doctors haven’t made any predictions because, well, lets face it, the munchkin likes to throw curve balls so predicting when she’ll go home is a little hard.

I’ve always wanted to be a mom, and I can hardly wait till my house starts filling up with things that say “a baby lives here!”. Just thinking about all the stuff it takes to take care of a baby makes me squirm with delight! :). I was able to hold her today for about an hr. Usually I hold her on my chest skin-to-skin. But today I held her in arms so i could stare at her. And it was all those things I mentioned above that I was able to think about while I stared at her cute little face. Hmmm…I sure hope this weight gain into the 3 lbs club really helps her lung development and she is able to successfully stay off the vent and move along in her development. She is 73 days / 10 weeks old, 35 weeks gestation. We are exactly 10 days away from when Taryn’s NICU buddy went home, and we are no where close. But, that’s OK. We will get there. We’ll have our day with our own pictures of Taryn and I being wheeled to the car in a wheelchair to go home.

Thank you for praying for Taryn. We really appreciate the love and dedication you have shown to our family.

And we are making bits of progress

She had a good day. They were able to ween her o2 down to 90%! And she’s sat-ing in the mid 80’s. They have her sedated to give her rest and keep her calm since she is back on the oscillator vent.

Tomorrow they are going to insert a different type of feeding tube. The current tube is inserted in her nose, goes down her throat and rests in her belly. This new tube will follow the same path but will be inserted further into her lower intestine. One the things that kinda started this whole thing off was that she had a little reflux and aspirated on the milk. So by moving the tube into her lower intestine her belly won’t get full and she won’t be able to spit it back up.

Other than that she is making tiny micro preemie steps in the right direct on Taryn’s terms. All I keep thinking is…”oh man, she’s gonna be a stinker”! And I have a feeling her favorite word will be “no”. :). But oh do I just love her!! I can’t wait to bring her home and cuddle and kiss her up!

Quiet Night

Praise the Lord we had a quiet night! She was able to rest peacefully and keep her o2 saturation in the low 80’s which is just fine. She is still on 100% o2, but required no manual bagging last night.

I’m not sure the plan of care will change much today. It’s just about keeping her comfortable so her little body can work on healing.

Thank you everyone for all the supportive comments, prayer and love you have for our family right now.

Update on Infection #3

Thank you so much to everyone who has been faithfully praying for us. This dip in the roller coaster NICU ride is hitting us pretty hard. We’re finding that our reserve this time around is pretty low. We are so scared of the unthinkable. It took 36 hrs last time before we started to see that the antibiotics were working. So hopefully by the end of day Thurs we will start to see an improvement in her O2 requirement. She is still requiring 100% O2 and her o2 saturation seem to be staying at a good level (low 80’s). We just have to fight off the infection and get her vent settings turned down.

Again, thank you..thank you…thank you! For all the prayers. We need them more than ever right now.

Vent, round 4 now is it?

She made it on the nasal therm for 20 hrs. Her gas was awful this afternoon so back on the vent she went. But, this time they gave her a bigger tube since she has grown. We kinda think that the reason the vent didnt work as well the last time was because the tube was too small and was leaking too much air. The blood gas after she went back on the vent was a lot better. Hopefully it stays in a good range now. One point the Dr made today is the only way she is going to get better is to grow. And she wont grow if she is burning extra calories just trying to breath. She described it like Taryn was constantly running a marathon. Poor thing.

So, the vent will help her out for a bit longer, allow her to grow and get more chunky. And…we will try the whole breathing thing again in a week or so, and in the meantime, keep praying.

Prayer

Ok. So. I decided to fast from the Internet for a week to focus my prayers on Taryn’s lungs and weight gain. I was to start this a few days ago on thursday. And to be honest I haven’t prayed once. I had every intention of doing it but I just couldn’t stay focused enough to pray. And, i was mad and frustrated with God. My little girl is fighting so hard to stay alive and I was just so mad that he couldn’t give her a break.

Thursday they put her back on the vent in hopes of it helping the co2 issue. It hasn’t.

We haven’t been to church since the week Taryn was born. For a couple of weeks I was just too sore, then it seemed like we had plans every Saturday after that. And really it’s all just a poor excuse. So we FINALLY made it to church tonight. Do you ever feel like the pastor snuck into your life and wrote a sermon just for you? The sermon was on prayer. Huh, how fitting. Thank you Lord, you have quite the sense of humor.

After the sermon we took communion and they brought up all the elders and if you wanted someone to pray for you, you could have them pray privately with you. So we waited for our pastor who married us and we prayed. I was a wreck. The weight of everything has just been too much for me lately and it’s no wonder because I haven’t given it up to God, I’ve been trying to carry it all on my own. You’d think I’d figure it out by now. But no. I like to test the waters every now and then to see if I can get by on my own. (Read that last sentence in the most sarcastic tone).

After church we went to dinner with my parents. My phone rings and it’s the NICU. So not a number you ever want to see pop up on caller ID. Long story short, they extubated Taryn and put her on the nasal therm. This is like the little plastic tube with prongs that fit into your nostrils. It delivers a flow of oxygen. Well, she seems to like it. The also moved her feeding tube to go down her nose and throat and into her belly instead of going into her mouth down her throat and into her belly. Her mouth is finally her own, for the first time she doesn’t have something in there.

Did all this happen tonight because of prayer. Yes. Can it change tomorrow? Yes. Does that mean God changed his mind? No. Trust me when I get to heaven I’m gonna ask why all this was necessary. But, I know prayer works and I know God hears our prayers. So, really the only thing, the best thing I can do for Taryn is pray. And now that I’ve broken down my nice little wall I built to separate myself from God I can actually do that. It’s so nice to know he is in the business of forgiveness because man I’d be in trouble if he wasn’t.

Back to the fasting…I haven’t “cheated” by going on-line, and I also wasn’t praying! So I’m moving forward with the fast and taking it seriously. I know I’m on my blog. But right now I need the writing. I need the outlet. There are things I can’t talk about but I can write about them and they need to be written down and off my chest so I can better deal. So, I’m going to let myself blog. And by the way my blog automatically posts to Facebook, so NO I’m still not on facebook right now. I’ve been out of the loop for 3 days and it’s kill’n me. 🙂

Here are some pictures of her from tonight. You can finally see her cute little face! And, how much she has grown! She is 2 lbs 8 oz now!!!!!

And thank you Lord for your never failing grace and commitment to taking care of us.

Fast

There has been some talk of others fasting for Taryn. Im her mom and I probably should be fasting as well. But that requires commitment right? And of course when God lays something on your heart its kinda hard to ignore it. So! Fasting I will be doing! I have thought about it and I’m committing myself to 1 week of no Internet or Facebook or Email or Blogging. Those things are my escape especially when I am pumping as I have 30 min of “free” time each time I pump. And since I spend about 3 hrs a day pumping that is a heck of a lot more time to spend with God!

Starting tomorrow, Thursday no more Internet, facebook, email, or blogging. If you need me give me a call.

Since I will be un-plugging tomorrow here is an update on Taryn…

She is still not getting rid of her CO2 effectively. (remember we get rid of ours by exhaling) Her level remains in the 70’s and staying in that range could cause long term brain and physical defects. They are hoping to get her level to the low 60’s but ideally they’d like to see it in the 50’s. So, they’ve made a change. She is now back on a ventilator, but this machine is hooked up to her nose like the CPAP machine was. They’re hope is that this will be effective enough to help her lower her CO2 level. If this doesn’t work, she will have to be intubated and put back on the conventional vent.

She has been gaining weight! FINALLY! The goal is 20 grams a day and she has been doing that the last few days. She is currently 2lbs 6oz!!! 🙂

My focus during this fast will be on her lungs and weight gain. I’d like to encourage you to join me. Join me in a fast appropriate to your life. If you do decide to join, leave a comment and tell me about it. And next Friday when my fast is over I will read everyone’s comments/commitments.

Lots of love and thank you’s,
BJTO