Thursday, January 15, 2015

News from our Fetal Echo and Eli's ENT Appointment

It's been a long, busy two days and I am worn out!  So glad to be back home tonight.  I'm pretty tired, but this baby is practicing gymnastics right now and that prevents me from sleeping so here's a rundown of our news from Tuesday and Wednesday's appointments.

Tuesday was our fetal echo and other scanning to check for any physical defects with our unborn baby.  Bryan and I went alone to this for a couple reasons.  First of all, we didn't know how long it would take (we'd been told to expect 2 hours or more for the scans) as it mainly depended on how much the baby moved around.  Secondly, not that we were thinking negatively, but in case we did have some news to process we didn't want one or both boys around as we worked through that.  After we checked in I had my initial ultrasound by a tech.  We had told her we didn't know the gender and were trying to keep it that way.  We watched the majority of the ultrasound she did but she had us look away at one point so she could check the genitals.  Her ultrasound revealed two arms, two legs, two kidneys, and other things that I had made up in my mind would be missing.  She tried to get us a good 3D4D picture of the baby's face, but the little squirt had its legs up over its head.  So we got a picture of that but the facial features weren't very clear.  That really didn't bother us because although it would have been nice to see more detail of the face, that wasn't our purpose for getting specialty ultrasounds nearly three hours from home!  The picture with the baby's legs over his/her head was pretty unique.  We did get a clear view of the baby yawning and the tech even rewound that for us to watch again.  It was cute enough to make any heart melt! 

After the tech was done, the pediatric cardiologist came in.  Her name was Dr. Tucker and we had not met her.  She just started with Eli's Indy cardio group in July so it was nice to meet her.  She spent a long time scanning the baby's heart and making friendly small talk.  At the end of her exam she said that as far as she could tell our baby has a healthy heart.  Because we're looking at a small heart in a small body within a larger body it's impossible to see every little detail, so she cannot rule out any small VSDs (ventricular septal defects which are holes in the wall separating the two lower heart chambers).  She has no reason to think there are any, but just cautioned us that is something she can't rule out.  Also, I won't go into specific details because it's very confusing, but a fetus has a different blood flow from a baby outside the womb.  That's because a fetus isn't breathing on its own so its blood doesn't need to go to the lungs.  After a baby is born there is a hole that closes up usually within the first couple weeks of life.  Occasionally it doesn't close on its own and requires medical intervention.  So that is something she can't predict right now.  Either of these things that she mentioned (VSD, hole that doesn't close) are not things she's concerned about.  She was just mentioning those to caution us that she can't say our baby is 100% heart healthy.  That's not just our baby, that's any fetal echo she does.  Dr. Tucker said she sees no reason to be concerned, she does not need to see us for any further exams while pregnant or even after the baby's born.  I specifically asked if we need to do an echocardiogram once the baby's born.  She said only if the baby's physician hears a murmur or if the baby doesn't pass its state mandated pulse oximetry reading (Cora's Law!) or if we have some other concern that develops.  Basically we couldn't have gotten better news about the baby's heart!

After the cardiology part was done, we were waiting for the maternal fetal doctor to come talk to us about the ultrasound results from the scans the tech had done at the start of the appointment.  While we were waiting, another tech came in and said she had a favor to ask of us.  The facility was interviewing a potential new employee and they wanted to know if we'd let her perform another ultrasound on me as part of her interview.  Say no or watch our baby move around a little more?  We agreed.  She said the doctor would come talk first then she would come back in with the girl they were interviewing.  The doctor came in and immediately said, "We're getting a better picture of that face."  By that time, the kid had squirmed around enough that its legs were no longer over its head and he could get clearer views of the baby's facial features.  In all honesty I never cared for the 3D4D pictures until I saw our baby's photo session!  We were able to see more features of his/her face.  Cute little baby lips (like big brother Zachary?), cheeks that are round (like big brother Eli's?).  Oh, so sweet!  The doctor spent a fair amount of time getting us some photos of the baby's face and he said it's because he really had nothing to discuss with us since everything looked good as far as he could tell.  Again, good news! 

Then the other tech and her interview prospect came in.  They were really focusing on getting good pictures of baby's brain, femur, and the insertion site of the umbilical cord into the placenta.  Again, none of that was because of concerns with our baby, they were using the baby to "test" the girl interviewing.  The doctor came back in to watch her and through all of it we just got to relax and enjoy more views of our squirmy little baby.  When we left after nearly two hours in the exam room, we were leaving with the knowledge that as much as they can tell from all the testing they did, there are no concerns.  And baby weighed in at 1 lb 11oz, almost half a pound more than the average 24 week fetus...determined by my non-medical late-night online Googling abilities!  As I said in my last post, I couldn't bring myself to pray for a healthy baby.  All I could do was pray that we could accept whatever news we got.  I still can't believe things are good so far.  It's a relief but it's also still going to be in the back of my mind.  Even after delivery I may not believe it for a long time!  No matter what, we know this is the baby meant for us, just as Zachary and Eli were meant for us. 

Here are a few of the photos we got from the ultrasound sessions.

This is a good profile pic of the baby.  This was at the very beginning of the ultrasound.  Notice the genitals are just out of the frame, she did that on purpose for us.  And, no, we didn't find out the baby's gender today either!


This is the picture we got with the baby's feet up over its head which prevented us from getting a good look at the face.  I love this though because even though it isn't clear, we can easily see its legs stretched up and the foot above its head.  Cute!

And here is the best photo we could get of the baby's face.  It was clearer on the screen, getting a photograph of it isn't as clear.  But it does show the lips, cheeks, chin, and nose very well.  I definitely see a little bit of both my boys in this picture.  The baby is saluting us over his/her right eye!

On Wednesday, Eli and I went to his ENT appointment.  As we walked into the building we ran into one of our favorite nurses, Britini.  She was the very first nurse Eli had at PMCH when he was flown there after his diagnosis in Evansville.  Over the years and admissions, we've had her many times and are always happy to see her.  Eli doesn't usually recognize her because she's a PICU nurse and those are usually his sickest and most sedated times.  It was good to spend a few minutes catching up with her.  Then we made our way to Eli's appointment with Dr. Hamaker (pronounced "Hay-maker").  Both Dr. Hamaker and her nurse practitioner were very nice and we were comfortable with them.  Eli doesn't have any active ear infection going on right now...actually this past week has been the healthiest he's been since August!  No runny nose, cough, or ear issues.  I'm really glad he's feeling better, but doesn't it just figure that he's doing so well when we actually see the specialist?!?!  Even though his ears aren't infected, both of them saw fluid behind his right ear.  With the issues he's had over the past several months combined with his history of pretty serious infection and several ear infections over the years, Dr. Hamaker is recommending tubes in his ears.  However, because of his snoring (the kid is loud!) and some other issues, she wants him to first have a sleep study to confirm/rule out obstructive airway issues.  Just in case he needs something else done he would only have anesthesia once for both things.  What besides tubes would they do?  Honestly, I didn't ask.  I am assuming it would be tonsil and adenoid removal but like I said I didn't ask.  It's difficult to get all the right questions out at the right time when there's only one of us in an appointment with Eli.  He's a pretty good kid, but he is, well we could say demanding.  He's had so many appointments in his short lifetime that he is way too comfortable and yet he is thoroughly annoyed by them at the same time.  Lately, he does well with the actual exam but then is ready to go.  He doesn't want any talking between mommy & the doctor, he just wants out.  That's not a big deal for a regular check up but today it was problematic because there was a lot to discuss.  So, no, I don't always get the right questions out as I'm trying to focus on the doctor and on occupying Eli.  Frankly, I'm not concerned about because I know we'll have another chance to find out before anything is actually done. 

So, the plan with Eli is to get the sleep study, have tubes placed in his ears (and possibly another procedure with that if determined necessary by the sleep study), and then get a hearing test.  We know he has a slight degree of hearing loss or impairment simply because there's fluid present.  How much?  We don't know.  We could do a hearing test now to assess that, but whether we do it now or after the tubes, he still needs tubes so let's just do it after and assess where to go from there.  There is a possibility he could have some hearing loss due to his strokes, but she doesn't think that's the most likely reason.  The main culprit on our list right now is the fluid.  Also when he has tubes placed, Infectious Disease wants the fluid cultured to see what may be growing in it.  They feel that with Eli's history, there's a strong possibility it could be another "fun" bacteria we need to deal with.  For now, we wait for a call about scheduling his sleep study and we start there!

As we left Eli's appointment he looked at me and said "Now we go see my doctors and nurses."  It was clear he knew we were at PMCH and that we should visit the third floor.  I actually didn't plan on it since it was about 4:30 and I wanted to grab food and head home, but it was obvious I had lost any say-so in the matter.  We headed through the tunnels and hallways we know too well and made our way to the children's hospital.  On our way we ran into Melissa who was one of Eli's physical therapists at St. Mary's in Evansville.  She now works for St. Vincent and we just happened to catch her as she was heading to the employee gym!  What timing!  Then we got up to the third floor and had a short visit with some staff there.  It seems to always work out that many of our favorites are working when we visit.  Or maybe we have just been there too long and have too many favorites!  Oh well, they're all great and love seeing Eli.  As we walked in I told him he could not go to the playroom because it was for the sick kids.  He immediately told me he was sick.  When the nurses at the station saw it was him and began to greet him, one asked "How are you?"  I don't think she heard his answer of "I'm sick" because it was only meant as a key to the playroom.  It didn't work and he had to show off in other ways.  During our visit we even got to see Dr. Steinberg who is the cardiologist in charge of Eli's pacemaker (no, Eli doesn't have one now, but he did and likely will again).  When we left the floor he wanted to see his fountains (we used to spend a lot of time at the two hospital fountains after his strokes because they were off unit and provided some therapy as he threw coins in them).  They were on our way to our parking area so we saw both fountains and also ran into one of his dieticians.  We hadn't seen her in months and he was in full show off mode by then.  I had a hard time stopping him though because I wanted him to burn that energy off before I strapped him in the van for the long trip home!

After the visit we went through Hardee's drive through (those were my orders and at that point I didn't care what we ate).  We made it to the south side of Indy before Eli started asking/crying to be home with Daddy and Zachary.  He does great on these trips, but once he knows we're headed home he wants to be there yesterday.  So for the next two hours he intermittently cried, yelled, laughed at his movie, sang the Star Spangled Banner and Take Me Out to the Ballgame (seriously, two of his favorite songs and he knows a lot of the words to our national anthem), and refused to eat the burger he demanded from Hardee's.  He repeatedly said he'd eat it when we got home.  We got home and Bryan brought him inside.  They sat down with his burger and, as promised, he ate the whole thing!

I'll let you know when his sleep study is going to be and what comes after that.  I'm not even sure how soon the sleep study will happen since it isn't scheduled by the office we were in.  They'll refer him to that department which will be the one to set it up.  Thank you for your prayers and support.  We know we are lucky to have so many people pulling for us. 

1 comment:

  1. It seems that Eli's doctors and nurses are warming up to him dearly. Well, who can't blame them when he's just too adorable. Anyway, I really hope his sleep study went well. After all, he seems to be getting better and better every single day. I'm also glad to hear about the positive results of your ultrasound. Looks like the baby is going to be a gymnast. Hahaha! Here's to a healthy pregnancy, Jessica! All the best to you and your family! :)

    Ron King @ Medgen