Neonatologist and NICU Tour

Today we met with a Neonatologist at Saint Francis.  He spent a near solid hour with us.  First he went over what he sees as the primary concern with Rowan.  He showed us pictures and recommended a few websites. 

Then he went on to explain what we can expect from birth – onward.  There will be a team of 4 for Rowan waiting outside the delivery room.  When he’s born, the nurse will take him out to be cleaned off and quickly assessed.  Then they will be bring him back into the room so I can see and hold him for a little while.

After that, they will take him to the NICU in the Children’s Hospital where the echocardiogram machine will be waiting outside his room for them to scan his heart and primary vessels to map out what they are dealing with as well as the pressure/flow strength, etc.  My husband will be able to stay with him throughout all of the testing they have to do.  He’ll be given an IV through the umbilical cord opening that will deliver prostaglandins, a hormone that will keep a small vessel (large in his case) open to help mix blood together so his body receives enough oxygen.  He will also be hooked up to a heart monitor.

That’s quite possibly all he’ll have.

They’ll send his heart study down to cardiology and on the first Friday after he is born a team will meet to decide on the best course of treatment.

Best case – he looks good, they slowly wean him off prostaglandins, he stays good, we go home and just take him to visit the cardiologist as frequently as needed.  He’ll likely be in the hospital at least a week BUT kiddos in the special NICU don’t have to wear the horrible “don’t steal the baby” bracelets

Rowan will have his own room in the NICU where we will have 24/7 visitation.  They also have a daybed and chair for us.  They even told us that Evelyn can come visit him for 30-60 minutes every day to see her baby brother!

Basically, the neonatologist made us feel like this is TOTALLY manageable.  While Rowan coming to us with these needs seems scary and new to us, they care for heart children frequently and are more than prepared to make this as easy a possible on our family. 

They told us that socks, mittens, and leggings he can wear right away.  He can have blankets.  They’ll put him in clothes as soon as possible, but he might need an IV in his arm eventually or leads for a monitor, so they recommend button ups so they can leave his arm out.

I guess when you get to the point you don’t know how to stay positive – it’s about time for tons of good news.  The last two days have been awesome for us.  We can totally do this.  We have an amazing team of doctors and nurses who are going to guide us through this and do everything they can to help Rowan come home quickly.

Oh THANK GOODNESS

33 week appointment was so much better.

I will be doing Non Stress Tests (NSTs) every week for the rest of my pregnancy.  That’s where they hook you up to a monitor to watch baby’s heartbeat for about 20 minutes.  Today was the first time I’ve ever experienced fetal monitoring that wasn’t done with a stethoscope.  It was kind of nerve wracking.  His heart rate was anything but consistent to someone who doesn’t know what to look for.  The doc said everything looks good though!  I’ve decided to bring a book in the future…and to ask them to mute the machine.

The ultrasound looked great.  His breathing motions are awesome, his heart rate is stable, and fluid level looks good too.  As far as the issues with the placenta go, still no sign of calcification – which means that we are still absolutely fine.  The doctor said she read some information and a report from our high risk OB that suggested that the problems she is seeing with the placenta could be absolutely nothing – and so they’ll just check on it it each week, and hopefully – it means nothing.

Also, my husband saw the chart of a little girl who was 7 months old and had the same set of problems Rowan does.  She was getting ready to have her FIRST surgery and looked totally normal.  So the last two days have provided that much needed burst of positivity we needed.

So – here I come December.  Rowan might be giant (5 lbs already? WHAT!?)  But I’ve got plans for our family that involve him making it to AT LEAST 38 weeks before he’s born and being home in time to be subjugated to the matching flannel pajamas my mother will buy for everyone for Christmas morning.

Nearing the End…

 

Well, our 32 week check up went pretty much super frustratingly horrible today.

The good news – Rowan is growing like a champ measuring right around the end of 34 weeks the beginning of 35 and weighing right about 4 lbs. 14 oz., which is wonderful.

However -

My fluid level is high normal, which doesn’t mean anything yet, but they have to keep an eye on it.

My placenta, however, is aging too quickly.  It looks much more mature than it should at 32 weeks, so now I have to go in for NSTs (non-stress tests) once a week as well as ultrasounds each week to make sure it is still safe for him to be in utero.  They are also checking with the high risk OBGYN to see if he needs to be seeing me to do advanced monitoring as well.  Too mature a placenta can mean bad things quickly – but we aren’t in the danger zone yet.  We should have a least a little bit of warning if it becomes life threatening for him.

That said, I am pretty much done with bad news.  This is the absolute last of it anyone is allowed to give me.

As of right now, the labor bag is packed.  Any doctor visit could easily turn into “go to the hospital now”.  I could also be looking at having an amnio again to check on how developed his lungs are…which just adds to all the things I get to have nightmares about right now.

I doubt there is any way he will make it to full term, which sucks because that would really have been helpful for him.

So now I have to take it super easy, get things ready at work in case I have to leave earlier than I’d hoped, and try to will my body to hold on as long as possible.

He’s strong.  He’s growing well.  He is a fighter and will keep fighting, even if his circumstances are not what we most desire, he’s just going to have to suck it up and deal with it.

Just like me.

So trying to spin things positively – we are monitoring him closely to be safe and give him the best chance possible.  I may not have to wait as long to know what we are dealing with.  The insurance company approved my delivery at St. Francis…but in their letter gave the address of the St. Francis in Columbus, OH…so that’s another phone call but it can be fixed easily.  AND he is almost 5 pounds – which means he will fit into newborn clothes and not preemie clothes even if he gets here early.

Man of Steel

One of the things I’ve been adamant about this pregnancy is that in no way do I want to remember this pregnancy as being scary and stressful.  I want to remember being happy and joyful as a part of this pregnancy as well.  True, this has been much more difficult than I thought it would be when I saw those two lines 6 months ago, but I am so excited to meet Rowan – regardless of the challenges we know we will face with him.

My husband and I decided quickly after Rowan’s diagnosis that we were not going to forgo normal pregnancy things because we were scared.  Maternity pictures being one of those things.

So after lots of idea searching, Doc and I headed downtown today to take some photos of Rowan and I together.  My little man is strong – we know that already.  So here are some of my favorites.

 

 

“The greatest gift you can give someone is to believe in them.”

 

And we believe in him.

 

 

 

“Strong is what you have left over when you’ve used up all your weak.”

 

 

 

“I can’t do this, but I’m doing it anyway.”

 

 

 

“Learning to ignore things is one of the great paths to inner peace.”

30 Weeks

Fingers crossed, Rowan still has a good 8 or 9 weeks in his current home.  Today at the ultrasound we watched him making breathing motions.  “Practicing” for when he is born.  We saw his heart again, and that one chamber that sticks out like a sore thumb.  That right ventricle and all that hooks up to it is such a big deal for such a tiny part of our son.

Once again, we were stunned as our doctor showed us his face.  He looks exactly like our daughter did when she was a newborn. 

Even though Rowan is still measuring ahead of average size, we are hopeful that I can handle carrying such a large little boy until at least December 5th.  It seems like a long way to go still, but I know it’s right around the corner.

I’m still working with the insurance company to make sure that they approve my delivery at St. Francis hospital, where they have a surgical staff and level 3 NICU.  Hopefully they will get whatever records they need in the next few days and that will be over and done with.

Other than some insomnia spells, I’m doing pretty well.  My husband has been home a lot more the last week, which has helped tremendously.  My coworkers at school are continuing to take great care of me.  I keep telling myself, I have to keep him in there for at least 8 more weeks.  Just 8 more.

In the meantime, we’re saving saving saving.  We’re hoping that we will be prepared for whatever financial needs Rowan has by the time he arrives – which means hello coupons, resale shops, and sale items.

Insurance Causes Headaches–(What I’m Sure is Part 1 of a Long Series)

Today I got a call from the hospital I am supposed to deliver at telling me my insurance had denied me permission to deliver there because it’s outside their system.

This was DESPITE the fact that on my reason for filling out a pre-admission form was listed as “Delivery of a fetus with CHD in need of a level 3 NICU”.  Also, DESPITE the fact that my insurance has all of the diagnosis information and referral requests from my doctors.

The hospital admissions called to tell me about it, because my insurance was telling them I was only allowed to deliver at a hospital within their system, one that does not have a NICU that can handle much of anything.  It’s not set up to be a hospital for high risk deliveries.

I couldn’t get ahold of the person from my insurance company who also tried to call me from referrals and I was freaking out.  What if I went into labor today and the hospital wouldn’t admit me?  What if Rowan was born somewhere that couldn’t take care of him because of some stupid piece of paper that wasn’t taken care of or some attempt by an insurance company to not have to pay for something?

I was so upset that I started shaking.  I was worried I’d put myself in early labor freaking about about getting this fixed – which would have just been the worst thing ever.

After thinking about it for a while and calming down, I called my OBGYN’s office and asked to talk to someone who dealt with insurance.  I had no problems with getting referrals from her office in the past and they seemed to have everything working like clockwork with my insurance prior to the whole mix-up today.  I explained what was going on to her and she was amazing.  She calmly told me that they could absolutely not deny me coverage at that hospital and that she had a contact with my insurance company and would call and get it straightened out right away.  She promised it would be fine and she’d call me tomorrow morning when it was all straightened out and that I could go to hospital with the NICU without worry if anything happened.

Lesson Learned!  Call the people who know how to deal with insurance companies and ask for help.  Sometimes you are lucky enough to get it.

Now, several hours later, it occurred to me that if something happens and I need to deliver/go to the hospital…I’m going to the one with the level 3 NICU and my insurance can be dealt with later.  I didn’t need to panic so much today.  I had it in my mind that if I went into labor the hospital I needed would reject me because of my insurance.

My husband wouldn’t have let that happen.  I wouldn’t have let that happen.  My OB wouldn’t have let that happen.

I think I expect to have to fight huge battles with insurance companies and make sure every tiny detail is attended to or something horrible will happen.  I think what I did today, calling the right person to get the situation fixed without me having to do it, is the best way to go.

I feel pretty confident that tomorrow this will all be sorted out and I will have panicked today over nothing.

A blog I read from another family whose child had a heart defect said the number 1 rule with insurance is to keep every piece of paper even remotely related to your pregnancy or your child’s care and to document who you talked to and what date and time anytime a doctor tells you you need a certain service or your insurance tells you it is approved or not approved.

Paperwork is always a headache.  I know I shouldn’t expect this to be any different, but it certainly feels different. Needless to say, I have a very large and rapidly growing file of papers now – with a few more documented phone calls.

Snappy

I find myself feeling more and more on edge.  You (women) know how when you are pregnant you feel like you are about to cry for no reason every now and then?  That’s the point I’m getting to.  Everyday it seems a little harder to stay upbeat and positive.  Everyday we get closer to his due date I start to feel a little more nervous.  I don’t think that it has anything to do with Rowan’s special circumstances.  I think it’s just stupid pregnancy hormones.  It’s kind of nice, to have normal pregnancy problems – and kind of crummy because pregnancy is very rarely easy for anyone.

I do notice that I am snappy.  I don’t have as much patience with people when I am frustrated (which is a lot of the time…it’s hard to not be able to take your socks and shoes off without it being a five minute ordeal).  I certainly don’t feel like I have time to calmly explain things in a nice way to people and I just want to make blunt statements and be done with it.  I move slower now but my to do list isn’t any shorter.

This must be that point in pregnancy where you turn into a mood swinging somewhat crazy person.  I’m tired all the time.  I spend all my “patience and niceness” energy with my daughter and my students…so to those of you getting what is leftover – please bare with me and spare me some forgiveness.  I’m trying to stay my usual self, but that just doesn’t happen everyday.  I’m sorry if you deal with me on a day it doesn’t.