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.
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.
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.
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)
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:
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.
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.