The Latest News

I wrote this post about five days ago and decided to wait and publish it when I was ready. I find that when I first hear bad news, I need a while to wrap my brain around it. Then over time, I (usually) come to terms with it and am able to move forward and make the best of the situation. I feel like I'm finally in the spot to write about it.

Mike and I have received some bad news regarding Sweet B. This is a difficult time for us, but we are remaining strong. Every single prayer on face.book or texted to me has given me the lift that I need at the exact time. It seems that when hardship befalls anyone, people tend to step away from them. They don't know what to say and often try to leave them alone. This whole special needs parenting thing has been very isolating, so please know that when I do receive an email or a text or acknowledgement, it means everything to us.

Sweet B remained in the hospital for a week after her fundoplication. It is a rough surgery and I cannot imagine any child getting this surgery and not getting a g-tube at the same time. Two words that I am sure we will use in our daily vocabulary until this feeding tube comes out, are retching and venting. She retches and is unable to throw up and her stomach is very uncomfortable due to the trapped gas since she cannot burp. We have to hook a tube up to her belly and vent her, which is essentially her throwing up into the tube through her stomach which relieves the pressure. We did this from 12 am until 2 am last night and until her tummy begins feeling better, and even after that, we will need to continue to do this. I am still happy that she had the surgery and believe it will help her in the long run. Seriously!!! Even though the last two days have consisted of her crying nearly all day while being hooked up to her feeding pump for 24 hours, it's still worth it. (Notice that I'm trying to convince myself of this...) My thought is that without throwing up all of the time, she will want to eat. I think it will help her greatly with her oral aversion, which is why she stopped eating in the first place. 


This is Sweet B trying not to smile at us in the hospital. She was so mad about the surgery! How dare we not consult her?!

The morning of Sweet B’s departure from the hospital, the neurologist called and told me that she had bad news, which is that Sweet B’s MRI revealed that her spinal cord is tethered. This has nothing to do with her being a micro-preemie. If left untreated, it leads to paralysis of the legs and loss of bowel and urinary function.

We have been under the assumption that she has mild Cerebral Palsy from being a micro-preemie, which is common. She might still have this as the MRI did reveal “mild cerebral volume loss,” which is brain damage, but the doctor is not concerned. It is not significant. The neurologist said that her brain is fine. And considering she was the size of a flea when she was born and starved of all nutrients in the womb, I’d say we are pretty darn fortunate!!!! It is common for micro-preemies to suffer from this and in her case it was due to not getting enough oxygen or nutrients through the placenta. We are so incredibly fortunate that she has normal cognitive function. She sings, talks, interacts, and has opinions on everything. And for this I am so grateful. 

Sweet B will need neurosurgery on her spinal cord as soon as possible. It might be one surgery or many. We will not know until we meet with the neurosurgeon on Tuesday. She already has a strange stance with her right foot and cannot cruise to the right. This damage might already be done. It might be able to be fixed or somewhat fixed. Most often, when the damage is done, it is already done. This makes me very sad. We will not know if her bowel function and urinary function has been compromised forever. We will see when we try to potty train, which won’t happen until after she is off of her feeding tube because potty training a kid who gets fed 15 ounces overnight is impossible. She will also undergo testing, probably very soon, regarding urinary and bowel function and possible kidney damage.

I wish I could say that this surgery will fix everything. My biggest hope is that it has not affected her bowel or urinary function. To look at this beautiful little girl who has already been through so much,   has her whole life ahead of her, and to know that she might not have control her bowels ever, hurts. But I have been very careful not to jump ahead of myself. My hope is that we will fix this, and it will enable her to start walking. And as for the bowels/urinary control, let's just cross that bridge when/if we get to it. 

She will have to be monitored for life, as the spinal cord can re-tether, which would present with symptoms such as loss of bowel or urinary control, or bodily movement. Twenty percent of kids with a tethered cord re-tether. 

I don't know much about the surgery. I have read that some surgeries are easy to recover from and some are hard. Some kids are vented and sedated while they lay flat for days so that the spinal fluid doesn't leak and some only lay flat for a few days. I'm doing my best to not imagine the worst and wait until the neurosurgeon tells me the plan.

The thing that bothers me the most about this is that I feel like I am to blame. In the NICU I demanded that they do an ultrasound of her spine, due to her sacral dimples. The did it and said that the dimples did not go very deep and her cord wasn't tethered. So since then, every time a doctor asks about them, I say that they have been checked out and are fine. Come to find out that an ultrasound really isn't sufficient enough to say whether or not a spinal cord is tethered, and that an MRI really is needed. My husband tells me that I have done the best that I can. I made sure that she get an echocardiogram to see if her holes in her heart have closed (they did). I've ensured that she has gotten all testing done that doctors have suggested for everything. I beg for more therapies and am always trying to get her more services. So to know that I missed something that has probably caused her permanent damage, kills me. Ahhhh...the motherly guilt that I am becoming all too familiar with.

On the day before we were released from the hospital, we received a call from Medi-Cal. This is where Sweet B receives her insurance. We own a small business and because of this, don't have health insurance. Making a very long story short, all of her benefits were taken from her and we were left with an incredible amount to pay for her future surgeries, medical equipment, and appointments. For the next 24 hours I cried and wondered what would I do. How did this happen? The worker at Medi-Cal was essentially evil, and refused to tell us how to get help, where to go, what to do. The horrible part is that Sweet B had already been approved for the year, and the worker took it upon herself to "set things straight"and take away her approval. We believe that we do qualify for help and now I am spending hours daily on trying to get this help.

Without going into detail, we desperately need this insurance. Without it, I don't know what we will do.

She doesn't qualify for free insurance because she doesn't have mental retardation, epilepsy, and her neurologist won't diagnose her with cerebral palsy because her cord could be what is causing her delay in gross motor development. 

If you could, please pray that she will get insurance. 

Please pray that her tethered cord has not caused damage to her bowels or urinary function or her kidneys, and that she will regain the movement to her right.

Please pray for this baby in my belly. (I realized through some comments that I hadn’t told you yet that I am pregnant. I am! Almost 26 weeks!) He needs his current “home” to have normal blood pressure and feel calm. And he is a “he!” (Developing normally with a nice fat placenta in the perfect spot with plenty of blood flow to him, set to come out at 36 weeks through a c-section!!!!!!).

These are the truths that we know:

-Sweet B is STRONG!

-We are so blessed to have her when she should have died. She talks and has normal cognitive function and sings and does so much more than we thought she ever would.

-All of these issues can possibly/hopefully be fixed. She has her whole life ahead of her.

-We have a wonderful, strong marriage, and the last few years have only made us stronger.

-We have people in our lives who give us encouragement and who love us.

We don’t know why it has been one thing after the other the past few years, but we know that we are so fortunate to have this little girl who means the world to us (even though she is very high maintenance!)

We see the neurosurgeon tomorrow and my prayer is that her cord tethering is not severe, and that we can get in for surgery as soon as possible so that she can be healed by the time the new baby comes.

Within a week and a half, we should know if Sweet B (and in fact all of us) will be getting the insurance that we need.

I figure that I will be feeling a whole lot better after I get some answers about both of these things.

And as the saying goes, “It could always be worse…”. (although I exercise caution when saying this…Everyone knows our luck recently!).