A Quickie...

I just realized my very long post about the week of Robert's birth was still a "draft" (blogger post language). So I just officially posted. Sorry! Please scroll down to Almost a week of updates...(4 Days Old) to read about it.

Emerson Meets "Bobby"!

Today was much better day for Robert! Yea! We spent the morning with Emerson and my parents with Robert at the hospital. And then after Emerson's morning nap, a bath, and a snack, we took her to see her new baby brother, "Bobby". She was so cute. She wore her adorable little whale dress and "tigtails" (what Emerson calls pigtails). [I will have a post with mainly pictures soon when I upload my camera.] It's a pretty long walk from the parking deck to the NICU. We have to cross over 2 skywalks through 3 different buildings. So as we encouraged her to walk, run, march, and hop the whole way there, it still took us quite a long time. (She is 35 pounds and wiggly...So carrying her is a little hard for long periods.)

We brought her baby doll so she could hopefully understand when we constantly remind her to be gentle with the baby doll (and baby). She was a little shy at first...The nurses just loved her. And why wouldn't you with those tigtails??? ;) She showed off her babysitting skills to Robert's nurse of the day by rocking it, then promptly dropping her on the floor, then picking her up by the head, swinging her around the room by the leg, and then dropping on the floor and leaving face down. It gave us a good laugh at least. For the most part, Emerson completely ignored "Bobby". She gave him a good look and smiled at first, but then she wanted to watch her video on the portable dvd player we brought in too. Oh well, not the sweet baby brother moment I was hoping for, but I guess completely being uninterested in him is the next best thing actually.

The doctors came in a while later (Emerson was still there on the couch watching her dvd). They gave him a good look and discussed his stats and dsat's from the night before. Emerson promptly starting singing (I guess she needed some attention to??? Lol.). I am sure the doctors liked the serenade from the 2 year old with the tigtails. It is so hard to read these doctors. The resident or nurse practitioner reads off the stats and info in such a mundane voice that it makes the biggest episodes seem like nothing. The main doctor just asks a few questions in the same unconcerned tone of voice, they all discuss while we catch a few words that seem to make any sense, and then they leave. So who knows...I am still unsure as to what they are thinking.

Then for the rest of the day, Phillip and I were able to relax and just hold our little baby boy. We took turns holding and feeding him. He is on a strict feeding schedule so we are given the bottle by the nurse (which is currently at 67 ml every 3 hours) and hold him in between. He had a few dips in the oxygen stats today...lowest being in the 50s. But for the most part, it was a great day. Towards the end (10pm'ish), we definitely cuddled up and took a nap together. I hated leaving him tonight because he finally seemed very comfortable and content resting on my chest.

We hope to hear something from the doctors tomorrow. They have been telling us that they hoped to have a more long-term plan of action on Monday. I know they are waiting on some of the genetic testing to be returned even though they said that will not actually affect their plan of action on his heart. Obviously, we are hoping for good news on the genetics testing no matter what. Jury is still out (for me at least) on my thoughts about surgery before we are released to go back to Mobile. I can't decide if I would rather him have some sort of immediate surgery so I have peace of mind that he is more stable at home (increase of oxygen in blood would lessen the likelihood of tet spells) or put off surgery until he is somewhat older (and just constantly live by his side until then because of the possibility of tet spells).

Baby Update 6.25.11 (5 Days Old)

It's been a long day...Well, a few long days... We finally were able to sleep in a real bed last night. I know Phillip would probably think that I had the better of the hospital beds (me the actual hospital bed and him the convertible couch). But my bed was actually a plastic mattress on top of a very hard surface. So it was constantly hot and flattened out to nothing once actually sitting on top of it. But at least it had that motorized up and down feature which came in real handy during the c-section recovery. Until the last day, I was unable to get out of the bed by myself. I had to have someone there to help me. It was ridiculous.

We returned to our temporary home (thanks to Michael and Chesley) at about 8:30pm. And then I laid on the couch while taking lots of meds (apparently, I had forgotten to take or ask for any since very early that morning). And then I went to bed...with uninterrupted sleep until 7am. :)

The plan for the day was to go to the hospital to make the 11:30am feeding and spend most of the day with our little guy. But Emerson was dropped off at around 11am (from spending the week with her grandmother - Phillip's mother) so we decided to change the schedule a little bit and go ahead with our trip to Babies R Us (a new Boppy to keep at UAB as ours is in Mobile) and then some lunch with our little girl. So after all that, we headed to the hospital to hand off Emerson to my parents who had been visiting Baby Robert.

The girl can eat. I think she has gained a few pounds just in the past week. As soon as we hit the food court to meet my parents, we needed jello. And fast. Did I mention that we had just had lunch?

So after dropping off Emerson with another set of grandparents...We headed up to see Baby Robert. We found him cuddled up with his grandmother (Phillip's mother). He was getting some good grandparent time in today. I just made the 2:30pm feeding so I was able to give him his bottle. It's so sad that I don't see him as much as I should and then on top of that seem to be missing all the little newborn baby moments too.

When we arrived, we found that Robert graduated from his Giraffe Bed to a NICU crib. :)

He was a little fussy this afternoon and just didn't seem to ever settle down. I had to leave the room for a while so I handed off the baby duties to Phillip.

While I was out of the room, our little guy had a meltdown and dsat'd. Of course, when I return, Phillip prefaces his explanation of the events with "I don't want you to freak out, BUT...". Apparently, Robert's oxygen levels fell into the 60s and his heart rate skyrocketed all while his pulse fell. It set off an urgent alarm to the nurses (alarms are constantly going off, but this one was considered "urgent"). His nurse thought that it occurred due to his positioning...meaning his neck needed to be stretched a bit more to allow enough air in. Scary. But not as scary when you aren't there. Phillip seemed a little nervous. But I took it in stride and just thought it was a rare occurrence and it had all been resolved.

What does "dsat" mean? From what we understand (remember we are new to this...), dsat is just a shortened term for desaturation. Basically, his oxygen levels were very low. A normal healthy baby is in the 97% to 100% range of oxygen saturation. Newborns and small children (healthy) do not have any blockage or damage to their heart, arteries, etc. Therefore, their blood is completely enriched with oxygen. Anything below 93% is worrisome. And anything below 90% is bad. Your brain and vital organs can not survive long-term without receiving more oxygen. Robert's oxygen levels are staying at the low to mid-80 range. They occasionally see the 90 range, but more or less stay in the 80s. His alarms are set to sound when he dips below 80.

I took over baby duties at that point. Phillip still seemed a bit anxious so I encouraged him to go to dinner with his mother. Almost as soon as he left, alarms started sounding...And for the next 3 hours...It was alarm after alarm after alarm. Not all were "dsats", but several were. And then there were the alarms that went off simultaneously. Nothing I did was working. Every few minutes, a nurse would appear and ensure that his monitors were properly placed and still working correctly, reposition him, or just simply silence the alarm. After a while, I asked the nurse to place him back in his bed so we could make sure that it wasn't anything I was doing to set the monitors off. But that didn't stop him, he would rest peacefully and then all of a sudden everything would alarm again. It was insane. And driving me insane. I definitely lost it. Finally, a nurse came in and was able to calm him down...and me down.

Phillip returned from eating dinner and picking up a few things from the house. I think it was a little obvious I needed to leave the room for a bit as he was resting peacefully. So we walked down to the cafeteria and I had a late dinner. Thankfully, when we returned, Robert was still resting. So we decided to come home and have another night of sleep in a real bed.

Almost a week of updates...(4 Days Old)

I am sorry that I have not posted anything since arriving at UAB on Monday. As you can guess, our little boy, Robert James, is here! He was born at 5:02 pm on Monday, June 20th, weighing 8 pounds 9 ounces and 21.5 inches long. I was induced, but he was born via expedited c-section after a few complications. Although not a c-section was not ideal, it has allowed me to actually stay in the hospital for 2 additional days and us to be closer to him.

As for our little Robert's entry into the world...He went into distress during labor and it was decided that he needed to arrive as quickly as possible. After they broke my water, his little heart was just not doing so well and they were worried that he was going into shock. It was decided rather quickly that I needed to have a c-section. Of course, Phillip had stepped out of the room to inform our waiting family that everything was fine (and give them a brief synopsis of what had occurred up to that point...no need to worry about the craziness as it was all under control at that point). So as the doctors are talking in a language that I mostly cannot understand, one looks at me and says, "You will be having a c-section." I take a deep breath and think to myself that I have an hour or more to mentally prepare and it will all be okay... I ask her when this will happen, and she says, "You might have 15 minutes." Omg. Call Phillip. He rushes back in and they hand him his scrubs. As he puts them on, various nurses and doctors are entering and leaving the room. The doctors are mostly looking at my chart, printouts, current stats, etc. Nurses are gathering things from the room and packing up the IV, bed, cords, etc.

It's all kind of a blur at this point. I am being wheeled into the OR, Phillip is being escorted to the waiting area while I am prepped for surgery, and our family waits outside thinking everything is just fine because Phillip was just out there assuring them it was. I am almost immediately moved to the OR bed and strapped down. At that time, various doctors and nurses stop by my head (as I can't really see or move) to introduce themselves and tell me what they will be doing and what to expect. I am really fine beyond the shock of it all happening so quickly until the Neonatologist comes by and tells me that he will step in after the baby is born at which time, the baby will be rushed from the OR to a side room where he will be resuscitated, examined, and then moved to the RNICU. I just nodded. But all I could think was RESUSCITATED??? The c-section started and as tears rolled down my face, the nurse looks over and asks if I have family available. YES! My Husband! Who is apparently still sitting in the OR waiting area. There were so many people in the room that I just assumed he was somewhere in there. But apparently not. No one had remembered to go get him. Someone grabbed Phillip and he had to tiptoe around the doctors as the c-section had already started...He apparently got a nice view of my insides which he said "aren't pretty".

Not too much longer and we heard a crying baby. He came out crying! No resuscitation needed! He was rushed out so quickly that we were unable to see him. After several minutes, the nurse took Phillip to see him where he was able to escort him to RNICU. He took a few pictures and brought them back to me so I could see. I went on to post-op recovery where I spent the next 3 hours. I wasn't allowed to leave until I could bring my knees up. In the meantime, the doctors were busy taking all his vitals, stats, and running some tests.

After recovery, we were able to "roll by" the RNICU room to see him. Since I was in a hospital bed, the nurse held him up so I could see him. The medication he was on (until yesterday) was so high that he was unable to be touched or held. He was receiving prostoglandins that kept the ductus aeortis and other arteries as open as possible. But side effects made him very sensitive to the touch (it hurt!), very warm, and very irritable. So we would not be able to touch or hold him for a while. :(

As for my stay in the hospital...My recovery was a little more than I planned. C-section's are not fun! I didn't realize that the pain and inability to do almost anything by myself would be so intense. I felt so bad asking Phillip to do the smallest of tasks for me constantly. But I literally could not do anything for myself. Still basically can't. Everything is a struggle. I was in bed until mid-day on Tuesday and then increasingly got more active. I was on Percocet and Motrin for pain which I could have every 4 and 6 hours, respectively. I had to ask for it though (the nurse wouldn't tell you when your time was up). And I would either be asleep, down in the NUCU, or simply forget. (My advice to anyone in this situation is assign someone to keep up with the time for you and remind you.) The nurses kept telling me to "stay ahead of the pain" meaning take the medication before the pain is really bad. But again, I would forget. The Percocet just made me so sleepy. And then I had to start taking Benadryl through my IV because one of Percocet's possible side effects is being itchy all over. Great! And then the adhesive on the c-section bandage (taken off around 24 hours after surgery) gave me blisters on my skin. So not only did I have a very sensitive incision, I also had these tiny little blisters appearing on my belly. Disgusting. I know. Benadryl has always made me just fall asleep. So for the first 2 days, I was a complete zombie. I stopped taking the Benadryl completely and tried lessening the Percocet so I could actually be around Robert without falling asleep and intelligently talk to people (I was making nonsense most of the time) and especially his doctors.

As for Robert...We were able to hold him on Tuesday finally. And the grandparents were able to see him. Each day, we were able to hold him a little more. The only problem was that I was still recovering...and sleepy...and needing to be in bed (as I could not walk, stand, or go to the bathroom by myself). My parents came in and took some of the feedings as that was something we could do. And Phillip went down and spent some time with him as well. He has been on Prostaglandins (a type of medication) that is supposed to help keep his Ductus Arteriosis open until the doctors can determine if he is dependant on it providing oxygen to the lungs. But one of the side effects of Prostaglandins is that it makes him very sensitive to touch. It apparently hurts to be touched, therefore, making it scary to hold him (just this horrible wimper of a sound while picking him up until he is comfortable again). Plus, he has a Umbilical Vein Catheter (an IV running through his umbilical cord) that is very sensitive and would be absolutely terrible if accidentally pulled or tugged on (i.e. painful!). It makes it very scary to touch him, much less, hold him. They actually decided today to stop the Prostaglandins at 3pm as they determined it wasn't making a difference in his stats. They have been slowly decreasing them over the past 24 hours with no change (so I assume that is how they made that decision). And you can see that he is more comfortable being touched as well. It will take approximately 24 hours for the Prostaglandins to leave his system though.

What is the Ductus Arteriosis? The ductus arteriosus is a normal fetal structure, allowing blood to bypass circulation to the lungs. Since the fetus does not use his/her lungs (oxygen is provided through the mother’s placenta), flow from the right ventricle needs an outlet. The ductus provides this, shunting flow from the left pulmonary artery to the aorta just beyond the origin of the artery to the left subclavian artery. The high levels of oxygen which it is exposed to after birth causes it to close in most cases within 24 hours.

Physically, Robert looks pretty normal. His hands and feet are a little bluish and sometimes his lips. But when he is all wrapped up in a blanket and you don't see any of the cords and monitors, he looks like a normal baby. He sleeps 24 hours a day. I have only seen an eye crack once at this point. The medication he is on makes him very sleepy. And beyond that, his little heart pumping is just exhausting as it takes a lot more energy to keep his body working at this point. He looks like a sleeping angel all day long. :)

Seeing the doctors is just by luck. They made their rounds at odd hours so you never knew when they would be there. He has a whole team looking after him - Neonatologist, Pediatrician, Cardiologist, and Geneticist. Basically, several of each. We haven't met all of the doctors that are looking after them, but we have met several. We did see the Geneticist (who was actually sent to us by one of the Cardiologists). He is helping with the genetics testing and hopes to have some results by this coming Monday. Not all of the testing will come in at the same time most likely, but we are mostly concerned with the DiGeorge Syndrome results (we have known about this one for a while now...). The Geneticist said that he would like to follow up with additional testing at 6 months of age and maybe even longer even if everything returns as negative. Basically, it sounds like their are tiers of testing to ensure all syndromes and disorders are truly negative. [If you didn't know...A heart defect can mean other problems such as genetic abnormalities. They want to be able to rule those out. It doesn't always mean that treatment will vary, but it could.]

Robert has his own private NICU room with a couch, chair, TV, etc. It's very nice. I couldn't imagine a better place for him to be right now. He has at least 1 nurse assigned to him so he is basically looked after 24/7 with someone at his bedside. The nurses are a wealth of information. So even though we don't see the doctors for very long, it hasn't been a concern.

And Discharge...I was discharged today by the way. I was actually very proud of myself that I hadn't lost it on anybody while in the hospital (as I had previously melted down when we had Emerson...I blame hormones and drugs.) But then during discharge, I had a complete freak out moment on the front desk receptionist in the NICU. I was discharged from the maternity ward to the NICU (rather than being wheeled to the car like normal). So my maternity nurse and a trainee nurse delivered me to the NICU in a wheelchair. At that time, the woman refused me entry because I didn't have my proper qualifications. When I was a patient, my wristbands tied me to the baby. But as I was being discharged, I needed a NICU badge (that she could make right there). So she sent me to the lobby to check-in to the hospital as a visitor. The nurses wheeled me down there and then back up. And then she refused me again because my "sticker" wasn't in a plastic lanyard (again, that she had in front of her). The lobby doesn't have lanyards. We have to get them from her. But she was too busy to be bothered because YouTube videos and her adult son (who was not qualified to be in the NICU) were using up all of her attention span. So I lost it. Screaming and crying apparently get you somewhere. I was let in and got a lanyard. She was reprimanded. Not my proudest moment but what else was I supposed to do?

We will be staying in a real bed tonight. Beyond excited. We left the hospital with the intention of grabbing dinner and going back. But then I started to feel the pain and filling my prescription was top priority. It was 8pm on Friday so we went to Wal-Mart (ughhh...). They were able to fill it pretty quickly, but in the meantime, Phillip pushed me around in a wheelchair (pitiful). Sitting in a wheelchair, crying (pain induced but then also thinking that I was missing the 8:30pm feeding), and not to mention in a Wal-Mart, was a personal low for me. But I was able to get a reusable heating pad (a must for c-section...or probably any delivery or stay on a hospital bed) and my meds...So things are looking up right now as I lay on the couch before bed...and another long day at the hospital tomorrow.

Tomorrow is the day!

We will be leaving for the hospital around 6:30am tomorrow morning! "Bobby" will arrive sometime tomorrow!!! I am very excited to end this long pregnancy process (it's been rough this go round), but also very nervous for what else lies ahead. We will hopefully know more about his condition and the severity in the coming days.

I have been keeping myself as busy as possible...That meaning reorganizing the amount of stuff we have around here. I have almost lost it several times as everyone else seems to be going on with life and not at least seeming too concerned (I know they probably are, but it just doesn't seem that way to me...). I am sleep deprived. And Emerson went to stay with her Grandmother today for probably most if not all of the week. :( It just seems like everything is on this roller coaster and I know it is about to take off...and I am just not sure I want to go on it anymore. I am extremely nervous about tomorrow. It's weird thinking that I will get to meet my doctor for the first time...TOMORROW! That is insane. I hate it. And then I will be trying to recover, all the while knowing that I have a baby that needs more attention than a normal newborn. It gives me a headache to even think about it all! It's beyond overwhelming!!! I guess all I can really say is...It's too late now!!!

I have been listening to a song by Matt Hammitt called All of Me a lot lately! I hope you will go check it out on itunes and buy it if you like it. :)

Please keep praying for us! We will update the blog soon!!!

Nursery Progress

I realize that us me worrying about the appearance of the baby’s nursery seems really trivial to most anyone reading our blog.  But please let me explain that as of 3 weeks ago, we had not done a single thing.  I was actually avoiding it.  I had decided not to buy another baby thing.  I didn’t want to come home to a nursery with no baby.  But after a while, I realized that even more, I didn’t want to come home with a baby to no nursery.

Previously, it was Emerson’s playroom.  And this is what it looked like…

But then we cleaned it out and had it painted…

 

And then came the decorating.  We had the main things – crib, rocker, etc.  It was therapeutic…and a bit stressful to put it together.  I pulled Emerson’s baby items (car seat, bouncy seat, swing, Moses basket, etc.) for wash (and then gave them to my mother to actually wash…haha).  And then pulled out the gender neutral clothes and the things that I had already purchased.  

Here are a few pictures that I snapped the day before we left for Birmingham.  This is how it was left and what we will return to.  Artwork needs to be hung and a few other things still to be done to finalize it all, but its turning out pretty sweet.  (The rocker needs to be moved into the room…Huhum…Dad?)  But for the most part, its a working nursery. 

  

The cute dresser I ordered came in about a week ago while we were here in Birmingham.  I haven’t seen it in person, but here is the website picture in blue (ours will be green).

On another note, why is it that the guy never worries about anything baby?  It is insane how much time I have put into making sure we have all that we need…and if we don’t have it, making a list of what we still need to consider at a later date.  I seriously doubt Phillip has given the smallest thought to how many blankets or onesies we have…and definitely not sizes.  I can’t imagine him even thinking about needing waterproof mattress covers or burp cloths and bibs. 

BLOG UPDATE

I have not abandoned you!  I have been unable to get on wifi except through Phillip’s computer.  I have been loyally blogging through Windows Live Writer via my laptop.  And only now have I been able to upload all my blog posts.  So look back at “older” posts that are actually new to your eyes today. 

Monday, Monday…(and 38 Weeks!)

It’s Monday.  Since Emerson went home to Mobile on Saturday, we have had 2 days of sleeping until we wake up…which hasn’t been all that late, but still. 

We are in the process of packing up our belongings and cleaning up our temporary space so we can move closer to the hospital within the next few days.  You know how people say that pregnant women go through a “nesting” phase?  Well, Phillip doesn’t get it, but I think my nesting instinct at this point is to just be closer to the hospital and have my things in one place so that when I get out of the hospital, I don’t have to drive 45 minutes to wherever my stuff is and I can actually find it when I get there (at the moment, it is spread across 2 drawers, 5 hangers in a closet, my suitcase, a few random bags, and the trunk of my car). 

Today, I am doing a few things that I have been putting off or unable to do for whatever reason.  And a few things to do that just need to be done before we move out. 

Emerson’s Birthday Week!

We have had a busy week!  We kicked it off with Emerson’s birthday party on Sunday afternoon (preparation on Saturday and Sunday).  My parents stayed in Birmingham for a few days and just left this morning.  Phillip and my father went out and about on Monday, Tuesday, and Wednesday to visit customers.  As Phillip says, he thinks he saw most of the tornado ravaged areas (April 27th) in the past 3 days.  I have really only seen parts of Tuscaloosa and Birmingham.  Craziness!  I spent most of those days with my mom running errands around Birmingham.  But I was able to take a nap (gasp!) on Monday and Tuesday.  It was the highlight of my day. 

Here are a few pictures from Emerson’s birthday party on Sunday afternoon…

A picture of the Lemon Love cupcakes from Dreamcakes.  I didn’t get a picture of the Strawberry Milkshake or Blue Moon cupcakes before they were in the process of being devoured.  Phillip and Emerson…That cupcake and ice cream must be yummy!

Yum.  Yum.  Cupcake.  Look at Madison eyeing that cupcake…So funny!My mom trying to coax Emerson into eating something…most likely fruit.  But who wants fruit, when you have a cupcake?It was H-O-T.  But baby Barrett came anyway.  He looks huge in this picture…But I think its because Rachel is so tiny.  Poor little guy!

My sweet friends!  Catherine (came all the way from Mobile) and Sara (a recent relocation from Mobile to Birmingham).  They braved the heat just for Emerson!This is a picture of Reagan (my sister-in-law) feeding Emerson to her dog, CoCo.  CoCo said Emerson tasted like cupcakes.  Fortunately, we were able to rescue Emerson from the dog soon after.  ;)The cupcake aftermath.  It doesn’t look like Emerson ate very much.  But it sure took her long enough.  Well, I apparently did not get a picture with Emerson unless it is on my parents’ camera. :( 

Wednesday was Emerson’s birthday!  She is officially T-W-O!  We went to Flip Burger Boutique at The Summit and then ran a few errands (including a box of cupcakes from Dreamcakes).  For Emerson’s birthday dinner, we went the The Cheesecake Factory with both sets of the grandparents.  Emerson has learned exactly what the Dreamcakes box looks like because as soon as she sees it, all we hear is “cupcake, cupcake, cupcake”  (sounds more like “tuptake”).  So as soon as we sat down for dinner…

“tuptake.  Tuptake.  TUPTAKE!”

Who can say no to the birthday girl???  So it was tuptake before dinner!  (We brought the cupcake because we can’t chance the dessert at restaurants for possible peanut contamination.)  A grilled cheese (and chewable lactaid tablet) and banana was dinner of choice.  And then a bowl of whipped cream with a pink candle for dessert.  :) 

Emerson got a few presents (haha!).  Most notably the Fisher Price toddler skates (she knew what they were immediately somehow?) and a Leap Frog Tag Junior Learning System (she will love it when we finally get it all working!). 

 

Emerson will be going home to Mobile on Saturday.  She has her 2 year old check-up appointment on Monday morning (stats to come then).  And she has MDO at St. Luke’s Tuesday-Thursday.  I know she will enjoy some normalcy.  She won’t be at “home”, but LaLa’s is almost as good.  :)  We will miss her, but I know she will be fine and it will be great for her to sleep in a real bed (not a pack-n-play), have her toys and own things, and just be back to “normal” even if for just a few days.  Plus, I need some quiet time.  It’s been almost 3 weeks in Birmingham with Emerson for 2 1/2 weeks of it.  I am exhausted.  And I am still supposed to be resting.

Baby Update 6.9.11 (37 Weeks & 3 Days)

Who would have ever guessed I would make it this far???  I definitely did not.  Every morning, I wake up and think that I can’t possibly make it through the rest of the day. 

My feet are starting to show signs of swelling.  I have skinny narrow feet…You can usually see all the little bones in them when I stretch then out.  But recently, they look a little puffy…yet everyone else thinks they are perfectly normal.  I am waiting for the end of the day when it looks like little piggy feet to take a picture.  :)

Other than that, I am just exhausted.  Phillip has been a great help, but I can tell he is exhausted too.  We have had Emerson with us for 2 1/2 weeks now.  Trying to make do in a new place with just the basics is hard, but for almost 3 weeks, it’s beyond hard – It’s exhausting! 

This morning, we were both dragging.  We really needed a few extra minutes of sleep this morning.  But instead, as soon as the garage door opened at 6:30am, we received a 2 year-old gift in the form of a pink polka dot nightgown with bright yellow paci hauling the must have PBK blanket.  At 8am, Phillip looked at me from the kitchen and said, “You know that movie, Mr. Mom, where he looks pretty good in the beginning and then by the middle, he looks like [Phillip looks down at himself], well, this?”  Haha…I know how he feels.  It’s just nice that he can commiserate now.  Phillip said soon after, “Just look at what I fed her for breakfast?”  (Pop Tart Minis, Oatmeal, & Wonder Pets DVD)

We met Phillip’s mother about 30 minutes before my UAB appointment.  We finally installed the extra car seat in her car that I have been carrying around in the trunk of my car since we arrived.  And off they went back to her house…And us to UAB.  Poor Emerson!  She has been stuck inside for most of the time here because it is so hot. 

On to the actual appointment…We actually saw the same doctor that we did the week before.  Amazing!  Although she really didn’t have much new to say, it was nice to see a familiar face.  The big news is that we will have a baby no later than June 20th!  They officially scheduled an induction on Monday, June 20th.  YEA!  The doctors are pretty adamant that this baby needs to wait until 39 weeks if at all possible due to lung development (they don’t want underdeveloped lungs in addition to heart problems).  So June 20th is exactly 39 weeks.  :)

No ultrasound this week…The first time in a long time.  They were able to detect the baby’s heartbeat via that little handheld monitor.  It apparently was a lot stronger this appointment.  Again, I was told…If something happens, just come on to the hospital. 

Not much longer…!!!

Maybe this will answer some of your questions…

Beyond the millions of questions I have about the baby, others have even more. We don’t have all the answers and are learning as it comes.  I read everything from medical reports to blogs of people I have never met.  At first, we both read so much and had so many questions.  But as time went on, we have decided to take what the doctors tell us and make decisions from there.  Our research about the actual heart (think anatomy class 101) has helped to understand and have a mental picture of what is actually wrong/different than a normal heart.  Until the baby is born, we don’t know everything and only plan for what we can.  But in the meantime, please let me answer some of the questions that I have had asked of me since we broke the news.  So here goes…

What is Tetralogy of Fallot (TOF)?

TOF is a congenital heart defect. A congenital heart defect is a problem with the heart's structure that is present at birth. TOF is a rare, complex heart defect, but it is one of the more common heart defects. The difference between TOF and other heart defects is that TOF is actually 4 heart defects:

1. A hole between the lower chambers of the heart (the left and right ventricles);
2. An obstruction from the heart to the lungs (smaller than normal pulmonary valve);
3. The aorta (blood vessel) lies over over the hole in the lower chambers;
4. The muscle surrounding the lower right chamber becomes overly thickened.

Yes, a baby can have those individual defects, but you must have all 4 for the TOF diagnosis.

Here is a healthy normal heart versus TOF picture.  This might help in comparison. 

From what we can see on the fetal echocardiograms, the VSD (hole between the right and left ventricle) is very large.  It almost looks like the entire wall is missing (as in this TOF picture you can see the wall).  When the fetal echo has been switched to the color view, you should see blue (deoxygenated blood) and red (oxygenated blood) separately.  But in our fetal echos, we basically see orange everywhere.  This is because the hole is so large and the deoxygenated and oxygenated blood are mixing.

What did you do to cause this? (More politely, "How did this happen?")

I don't know. It just happens unfortunately. Truthfully, doctors don't know what causes most cases of TOF. Of all the reasons that can increase the risk of having a baby with TOF (Rubella, poor nutrition, alcoholism, over 40 years of age, and diabetes), I don't have any of those issues. And if you watch TV and see all those malpractice lawyer commercials, then you probably have noticed that TOF is listed as a birth defect for prescription drugs such as Paxil and Zoloft. [No, I have never taken either. I actually have taken very few prescription drugs in my lifetime.] And as far as we both know, neither of us have a family history of TOF. [So it's not hereditary.] I hope you know that I have researched the topic as much as I possibly can.

If you have another baby, will that baby have heart problems too?

As far as we know, the baby does not have a underlying genetic disorder. Neither Phillip nor I have a family history of congenital heart defects. So no - Emerson is perfectly healthy and there is no reason to assume another baby wouldn't be either.

Did you consider abortion?

No. Enough said. Although it wasn't directly discussed at any of our appointments, we could tell that it was almost said earlier on. We are still reminded at every doctor's appointment that the baby is at an increased risk of stillbirth.

How did the doctor's discover the problem?

Many TOF babies are not diagnosed until after birth (from what I have read, it seems that those that know before birth, have also had other complications). I am assuming because the VSD (hole in the heart) may not be large enough on the earlier ultrasounds to be seen. But during my 5 month ultrasound, the ultrasound tech and OB noticed that the umbilical cord only had 2 vessels (should have 3) which is called a Single Umbilical Artery (SUA). But sometimes due to the view, the third vessel (or second artery) is just hidden on the back side. Sometimes, a SUA is an indicator that there could possibly be other problems. Therefore, my OB wanted to confirm the SUA at my next appointment at 6 months. During the ultrasound at 6 months, the doctor had the ultrasound tech do a thorough ultrasound looking for any other possible abnormalities and confirmation of the SUA. At that appointment, the initial heart problems were noticed and my doctor even mentioned possible TOF. At that time, we were referred to the high risk fetal specialist at USA C&W. The rest...Well, you can read my blog to catch up. ;)

What are you most worried about?

Well, I can't say there is only one worry. Of course, as much as we do know, I worry about the unknown right now. But after the baby is born, a lot of our simple questions will be answered (eventually).

After that, I worry about the surgeries. We really won't know how many and when he will need them. The pediatric cardiovascular surgeon thinks that the baby will need surgery soon after birth to place a shunt on his heart that will increase the amount of blood flow to the lungs (as the pulmonary valve is extremely constricted according to the fetal echocardiograms). And then the full repair of the heart somewhere between 6 and 9 months (to fix the actual defects).

And then beyond that, I worry about his development. From everything I have read including medical reports and personal experiences with heart babies, delayed development is to be expected. Heart babies are typically on the lower percentile of the growth charts, have delayed motor skills, and need speech therapy. Emerson has been on the higher end of the growth chart from birth and did everything from crawling to walking to jumping early. So I figure if he has her genes, then maybe he was destined to do them early, but now will just do them on time. That's my hope at least. :)

So as you can see, my worries have developed into stages. I am focusing on more on the immediate, but still concerned about the future.

What is "open heart surgery"?

Let me just say this upfront...Open heart surgery is NOT just another surgery that happens in the chest cavity or even in the entire abdomen. It is NOT the same as having your appendix removed or having a broken rib. There. Said it.

Open heart surgery is any surgery where the chest is "opened" and surgery is performed on the heart. A heart-lung bypass machine is used to pump oxygenated blood to the brain and other organs while the heart is stopped. The heart is not beating while surgery is performed. [The initial surgery to insert the shunt will require a closed-heart surgery where an incision will be made through the side of the chest between 2 ribs.]

Recovery without complications for any child will take 3 to 4 weeks once at home. An infant needs even more care for the first 4 to 6 weeks. An infant needs to be held very carefully during this time as supporting their head and bottom is important. No matter age, we will be unable to lift by the arms (which would be typical at 6 to 9 months old). Activity will be limited which means that even crying for too long may cause severe exhaustion. No pushing or pulling (think rolling over, crawling, sitting up), and even lifting the arms over the head is a big no-no.

 

I hope this helps answer any questions that anyone may have. I am an open book if you want to know anything else. But unfortunately, I don't have all the answers either.  Please feel free to ask my any additional questions.  Seriously, I don’t mind!

Baby Update 6.2.11 (36 Weeks & 3 Days)

My appointment with the Maternal Fetal Specialist at UAB was at 2:45 this afternoon. It was somewhat better than our last appointment (For one - It didn't take 4 hours.). My patient records finally made an appearance (lost last time). I saw another doctor (I haven't seen the same one yet). The doctors are very hands-off at UAB it seems. You see several nurses that each do their own little task only to leave and see a new nurse a few minutes later. When you finally see the doctor, its just a few questions before they are out the door again. According to one of the nurses, some of my tests and lab work had been done too early in Mobile. Therefore, they needed to be repeated. Last week, the doctor ordered blood work done but I was ushered to the discharge area before that happened. Oh well. I brought that up this week and it seemed to evoke complete confusion. So the doctor just ordered it again. I went on to ultrasound after that for a quickie look. The baby is moving and my fluid is around 20+ cm (still high for 36 weeks). I was sent to the discharge area again only to remind the nurse that I needed my blood work (the same blood work that needs to be done between 32 and 37 weeks)...So she sent me to the lab where they had no record of an order for blood work. *sigh* Luckily, the nurse just did it anyway and said she would figure it out later. Then I went to check out. Finally.

They went ahead and made the remainder of my future appointments. According to the doctor, they are hoping I get to 39 weeks when they will just go ahead and induce. (Although no official date on that yet...Boo!) But the appointment girl made me appointments into 40 weeks. I really am not sure if they know what is going on there!

In Mobile, I always had my ultrasounds, testing, lab work, etc. before I saw a doctor. It seems to me that makes more sense. My OB would always review any results/pictures and go over anything of concern with me at the time. At UAB, I always see the doctor and then they send me for further things...And then I don't see anyone again until my next appointment...And its never even the same doctor...And on top of that, they never have any of my records. Should I worry??? I miss Dr. Cunningham. :(

Before our afternoon appointment, we were planning to enjoy a nice lunch without Emerson. ;) But plans changed when Emerson needed an earlier than normal nap. (The pack-n-play no longer holds her and being in a new place, she has a bit of a meltdown if we leave her alone to nap.) We instead had a 10 minute lunch at the hospital food court. :(

Phillip's mother was able to take the day off to babysit so we we could go to the doctor appointment alone. Although I don't have much to do here that I could normally take care of at home (cleaning house, little chores here and there, etc.), I am seemingly busy and bored all at the same time. It's just hard to relax when you aren't at your own home. I have 2 books that I have started and read back and forth. But that is about all I have to do outside of taking care of Emerson. My parents are coming to Birmingham this weekend for Emerson's birthday party so that will be nice to have a change of scenery for a few days. Maybe we can go eat at the Urban Cookhouse again this weekend. :)

Still here. For now.

Day 10. Food is running low. Ran out of apple juice and milk yesterday. Diapers are next to go. Must go to store and stock up again. Although morals are still high, energy is running out for everyone but Emerson.

Seriously, we were able to go out and about yesterday. We had lunch at Urban Cookhouse in Homewood yesterday. I highly recommend the Berry Good Chicken Wrap. Yum yum yum. I am going back very soon. I know my Mom will love that place. :)

Then we hit the local toy store just down the street (not a chain type). I highly underestimated Emerson's interest in trains. [She has the Mickey Mouse train which "disappears" from time to time because we just can't take it anymore.] I almost bought her a wooden train set that was on zulily the other day. I am regretting that purchase since it was really discounted (birthday, future Christmas present, etc.?). Ugh. Oh well. I did some research last night and found some really cute and fun generic train sets that work with Thomas the Train and the other popular sets. I don't think she cares or will care about that kind of thing, but its nice to know that they can work together. We will see how much the interest keeps up. Thanks, Chuggington! I took other's advice about keeping her far far away from Thomas & Friends cartoons only to have you come along on the Disney Channel. Leaving that toy store was apparently a horrific experience for all of us.

On to Dreamcakes. Cupcakes for Emerson's birthday party ordered. We taste tested the Strawberry Milkshake and Bananas Foster cupcakes. Emerson too...They are very careful not to cross contaminate with just about anything if it isn't in the ingredients (which are all listed with the flavor). We decided on Strawberry Milkshake and Lemon Love for Sunday. :)

Then it was on to Gardendale for a visit to the splash pad. Since we had avoided a nap all day, Emerson was already a little worn out which made the visit short. But she had a great time nonetheless. Somehow, she avoided a nap the rest of the day too...So it was bedtime as usual at 7pm (thank goodness...we needed to get back on schedule). Hopefully, we can continue that from now on.

This morning, we had a visitor around 3am. She crawled out of the pack-n-play...again. :( Some Baby Einstein lullaby music seemed to get her back to sleep in our bed. And then Phillip decided to move her back around 5am. Mistake. I found him asleep on the other bed with 2 baby quilts (that were originally his by the way) draped over him...and Emerson jumping up and down in her pack-n-play (anything within arms reach thrown across the room and all the reachable drawers to the dresser open).

As for "Bobby", we are still waiting. I have a doctor's appointment tomorrow so I will post an update then. I am still hoping we can get an inducement date out of them (they didn't seem too concerned about all that last appointment) so we know if all else fails when we will meet this baby.