We are transfering

Just wanted to let everyone know, we are transferring Taryn today. We just found out so we are not sure the time frame.

We are transferring her to UCLA

Please pray for Taryns health and stability while the transfer is happening.

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URGENT PRAYERS NEEDED

They had to put Taryn back on the oscillator vent last night. She is requiring 100% oxygen.

Her saturation is in the 70’s – not good

Please PRAY HARD for her healing….and for our peace.

She is really sick.

Transfer

To keep you in the loop.

Taryn’s vent settings are high again due to infection. She is requiring 100% oxygen and trying really hard to keep her oxygen saturation in the mid 80’s.

We have decided that once she gets over this infection and starts to stabilize we are going to be transferring her to Childrens Hospital. We (her Dr.’s and nurses) all think she has reached a point where she needs to be moved to a hospital where there are specialists and every medical advantage available to her.

It’s a tough pill to swallow. It is going to mean a lot of changes for Ben and I. And a lot of us learning to trust her doctors and nurses all over again.

Please pray Taryn can get past this infection and stabilize so we can get her to Childrens soon.

Please pray for strength for us too.

Thanks
BJTO

Another stressful day

Well kids it was another draining day. Taryn has ANOTHER infection. Being on the vent makes her so very susceptible to them. She also had her eye appointment and the ROP progressed, so she had the laser surgery to correct it. She will be rechecked next Monday and hopefully there will be no progression. And, the possibility of a Lung transplant was thrown into the mix today as well. Children’s hospital was contacted today and the transplant team is going to review her history, and get back to us.

I am so very overwhelmed and tired. I’m ready to be past all this. This time I’m really ready to be past it all.

Please continue to prayer for our family and a miraculous healing of Taryn’s lungs.

Biology 101 and Stuff

I am unfortunately stuck with the wimpiest cold there ever was. This, equates to no visiting Taryn. 😦 If I wasn’t such a rule follower, I would ignore that I’m sick so I could visit my daughter. However, I don’t want to get any of the other babies, or nurses, or RTs, or Drs or…….sick. And when I say sick let me explain: I have a headache and runny nose. THAT IS IT! Stu-pid!

Anyhow, Taryn is doing great. They are still able to lower her vent settings a tiny bit each day and she is tolerating it just fine. She currently weighs 1547 grams. (that’s almost 3 lb 7 oz).

I’m hoping this “cold” leaves me tonight, because I really can’t take too many more days of not seeing my baby girl. It makes me sad and moody and I’m wanting to pick meaningless fights with my husband about nothing. I want to yell at him for nothing and everything. Seeing as how that isn’t something I should be doing…because well, he isn’t doing anything wrong…I’m holding back on the picking fights thing.

It is amazing how well Ben and I have treated each other during this whole thing. A lot of couples will start to take it out on each other. Us? We just don’t go there because we know it isn’t acceptable behavior. I think about going there a lot, but all that would do is crush my biggest support, and let’s face it. I can’t afford to have my support system gone. And, I refuse to let anything come between our marriage…”for better or for worse”, that is what we vowed. Right now, is a “worse” time. But we will get through it with each others support and keeping our focus on the Lord

During our meeting on Tuesday we talked about Taryn’s lungs and the support she will need. For now everyone’s hope and plan is to keep her on the vent till she is at least term and then try again to extubate. BUT we also talked about what could happen if that doesn’t work. There is a chance Taryn might need extended support on the vent. This means if she can’t get off the vent this next try, they are then going to perform a tracheostomy. This is where they will surgically cut a hole in her trachea to attach a breathing tube. This means that she would be able to go home but on a ventilator.

Tracheostomy 101

Tracheotomy is a surgical procedure that is usually done in the operating room under general anesthesia. A tracheotomy is an incision into the trachea (windpipe) that forms a temporary or permanent opening which is called a tracheostomy. Sometimes the terms “tracheotomy” and “tracheostomy” are used interchangeably. The opening, or hole, is called a stoma. The incision is usually vertical in children and runs from the second to the fourth tracheal ring.


A tube is inserted through the opening to allow passage of air and removal of secretions. Instead of breathing through the nose and mouth, the child will now breath through the tracheostomy tube

After a tracheotomy procedure, the child usually stays in the hospital for about five days, unless there is a complicating condition. It takes about two weeks to recover fully from the surgery.

This is an example of how it would look on Tayrn (No, this is not her)

Management of children with tracheostomies is a complex process that required careful coordination and consistent follow-up. Parents need to be comfortable with all aspects of tracheostomy care before taking the child home. Nursing services should also be arranged before discharge from the hospital.
Additional info can be found at this website

I am afraid of this last scenario. I’m ok with bringing Taryn home on a monitor and connected to oxygen. But, a ventilator?!!! A hole in her neck?!!! I just want her to have the experience of being a normal baby. A baby who can be walked around on my hip all day. A baby who can play without tubes stuck to her. A baby who is not limited by a mechanical breathing device! A baby that can be picked up and cuddled in any kind of position without fear the ventilator won’t oxygenate her properly. I want her to come home to a mommy, daddy, kitties, and all her baby stuff. Not a home set up like a hospital, with its very own nurse to help care for her. I’ve missed out on so much already, and I really just need her to come home with only a monitor and O2. I don’t want to miss out on all the fun stuff, like playing with her in the bath, or running out with her to do errands, or for Pete sake just going on a walk.

I’m sure this sounds selfish. I’m sure I should have the “all that matters is my baby is alive” attitude. I’ll get there eventually. But, right now I need to go through all the emotions about this possibility so I can be at that place of positive thinking should the time come.

Also, add this to the list…Taryn has ROP. She is in Stage 1, Zone 2. She will now have an eye appointment every Monday. On Monday the 4th, if her ROP has progressed she will have laser surgery to fix it.

Retinopathy of Prematurity (ROP)

Definition:
Beginning at around 16 weeks of gestation the retina (the lining inside the back of the eye) starts to develop a network of blood vessels. This intricate web initially forms in the center of the retina, at the very back of the eye. Gradually the blood vessels spread to cover the retina’s surface, moving toward the front of the eye. By around the time of a full-term birth, their growth is complete.

These blood vessels, which supply the retina with oxygen, sometimes don’t grow as planned after a premature birth. They are supposed to spread from areas of high oxygen (in other words, where they are already) into areas of low oxygen (where they haven’t formed yet). But once the baby is born, the signals directing blood vessel growth can become confused. Extra oxygen that a baby may be getting (even oxygen from the air), episodes of low oxygen and numerous, other, unexpected things, may send errant signals and cause abnormal, new blood vessels to grow. These abnormal vessels can block out light, and damage the retina by pulling on it, possibly even causing the retina to detach from the wall of the eye. Most cases of ROP – roughly 90%, by some estimates – cure themselves spontaneously. Some babies will need treatment, laser therapy. Laser therapy can be done right in the NICU. The ophthalmologist will deliver a laser beam into the eye which will destroy the abnormal retinal tissue arresting the growth of abnormal blood vessels and scar tissue.

How ROP is classified:

  • Stage
    This conveys how mild or sever the condition is. Although ROP is a progressive disease – it starts at stage 1 and may keep going through to stage 5 – it doesn’t always progress. It may stop at any earlier stage and disappear entirely.
    Mild – Stage 1: The eye Dr can see a white demarcation line separating the normally developed retina near the back of the eye from the underdeveloped retina in front.
    Mild – Stage 2: The demarcation line has been replaced by a ridge of tissue
    Moderate – Stage 3: The ridge has gotten bigger, with some new, abnormal blood vessels and scar tissue forming on it and extending toward the back of the eye. Treatment is often considered at this stage, to keep the ROP from progressing further
    Severe – Stage 4: The scar tissue has pulled on the retina, and caused it to partially detach. Since the detachment is not complete, it may or may not seriously affect the baby’s vision. Surgery to re-attach the retina is usually recommended.
    Severe – Stafe 5: The scar tissue has pulled hard enough to completely detach the retina. This allows no useful vision. corrective surgery to re-attach the retina can sometimes help.
  • Location
    The location of the ROP conveys where it is in the eye.
    Zone 3: Where the blood vessels form last, around the edges of the retina. This is of least concern
    Zone 2: The middle section
    Zone 1: Where the blood vessels first start to form, and where most vision occurs.
    Information taken from the book: Preemies: The Essential Guide for Parents of Premature Babies

So, as you can see there is a lot for me to think obsess about. On Monday while I was holding her I was praying. I was asking the Lord to PLEASE heal her lungs and allow her no disabilities. And as clear as day, the Lord spoke to me reminding me that His plan is perfect. No matter what it is, His plan is perfect.

Update

*Sigh*  The munch is back to her old self!  We on the other hand, are still exhausted from Thursday. 

Today when we went to see her she was all cuddled up and sleeping.  Then, I think she hears my voice and wakes up to play.  🙂  Today was one of her longest wake periods while I was there.  I would say she was up and interacting for a good hour and 15 min.  She didn’t look tired or uncomfortable, she just looked happy to see us.  And, gave me a really BIG dirty diaper to clean…and clean…and clean some more.  It was one of those kind where my Dad used to put us under the faucet to clean us up.  😉

I really want to bring her home.  I know she doesn’t know any different, but I feel so badly that she is still there and will be there for a while longer.  I hate that I have to leave her.  I don’t like that she could possibly know that I leave her.  Again, I know she doesn’t know any better, but I feel like I need to explain to her that she has to be there and I am not leaving her there because I don’t want to take her home.  It simply breaks my heart.  Imagine giving birth and then not being able to take your baby home with you.  You know you are a parent, but you don’t get to live like a typical parent.  It is really hard.

The first few weeks I had that period of time where I was bitter that her Nurses, and RT’s spent more time with her and knew her better than I did.  But, I can honestly say that feeling is gone and I am just so thankful she is surrounded by such love.  I mean if she has to be stuck in a hospital thank the Lord she is there.  I was telling one of her nurses the other day, that when I walk into the NICU I feel like I am walking into our family room.  Comparably it is a smaller NICU, so all the nurses are able to get know the families that are there long-term.  Where as if we were someplace else we might not even be able to meet everyone that works there.  I never have to worry that she will be sitting in a dirty diaper too long, or that she will be laying there awake with no one to talk to her.  Or simply that the nurse taking care of her won’t know her personality and over look a need she has.  They ALL know her and know just how to take care of her.

She has done an amazing job recovering from Thursday.  Every day her vent settings are getting lower and she is adjusts to it beautifully.  It looks as though I will get to resume holding her tomorrow!  4 days of not holding her is waayyy too many days!  Tuesday we are going to have another BIG meeting with everyone to discuss the past 12 weeks and what the “plan” will be from here on out.

Please continue to keep us in your prayers, and thank you for all the prayers that have been said.

❤ BJTO

Taryn is feeling better

God has something planned for this little Munchkin!

Talked to her nurse this morning…
-She’s opened her eyes
-Her oxygen requirement has come down to the low 70’s
-Her oxygen saturation is mid 80’s which is fine
-Her blood gas was good
-The tests they ran on her major organs all came back that they are functioning just as they should

Thank you for the prayers.
❤ BJTO

Update

Taryn remained stable during the night. Her vent settings are still high and she is still requiring 100% O2 but, she is stable and hasn’t required any interventions. Her blood gas looks good, (this is what helps them to decided what the vent settings should be) but has not improved enough for them to make any vent changes.

She rested peacefully all night. I imagine she’ll start to come down on her settings just a bit by the end of today or tomorrow as I am sure yesterday has left her exhausted.

Please keep praying.
❤ BJTO

Update on Taryn

Hey everyone. Here is the scoop on the last 24 hrs.

Yesterday they decided to extubate her and try the CPAP again. I held her around 2pm and she wasn’t in the mood. She just wanted to lay in her bed and watch her mobile.

Last night her O2 saturation was low and she wasn’t recovering as quickly. It’s normal for her to dip down in her saturation but she usually recovers quickly. (Meaning we usually have like 95-100% oxygen saturation. Because she is a preemie it’s not good for her levels to be that high as it could damage her eyes.)

This morning she was having the same issues so they decided she needed to be reintubated. They had a hard time this time reintubating which is what caused her to decline. It was pretty much like you see on tv. They had to give her injections to keep her heart going, when that didn’t help they had to shock her with the paddles 2x. Thank the Lord all this took place while I was frantically driving to the hospital because there is no way I could have seen any of that.

She has stabilized. Her vent settings are high. (The settings I’m referring to are 4 different things. 1) is how much oxygen she is receiving 2) is the rate, meaning how many breaths per min. 3) is the pressure or force of air it takes to keep the lungs constantly inflated and 4) is the pressure or force of air that is being delivered with each breath.) She is requiring 100&% O2 and the saturation of oxygen in her blood is in an OK range considering what she went through. Her saturation has been increasing little by little as the day goes on.

This whole episode lasted about 20 min. Which brings us now to a place of an increased risk of additional health problems. Like mental retardation, cerebral palsy just to name a couple. But of course we won’t know if she will have any of these issues till she is older, around a year and a half.

The plan:
She is going to stay on the vent till she is at least full term and her requirement for breathing assistance comes waayyyy down. We are going to stop “pushing” her and just let her be and grow at her own pace.

We are truly blessed by the NICU staff. These people are amazing and care so deeply for Taryn.

Thank you for your prayers! And keep them coming because we need them badly!

❤ BJTO

URGENT PRAYER NEEDED

Baby Taryn needs more prayer.  Today the MD’s asked Janelle to come down to the hospital because she was not doing well.  They had to use the paddles and medicine to revive her.  She is somewhat stable in that she is on the vent and her O2 is coming back up but she is requiring intervention.  Please pray for her, and for her mommy and daddy.  They need the Lords peace and comfort!!  Pray for the physicians that they know how to proceed. 

Jehovah Rapha, You are the Lord that healeth!