Therapy and Medication

In our last update, I let you all know that Ellie started showing her first signs of distress at 15 days old.  She started with sweat across her brow while nursing and a few days later, started retracting when she was breathing.  I called the cardiologist again on Tuesday this week to let her know about the retracting and she scheduled us to come down to Children’s on Wednesday morning. 

When we came in, they took us to get a chest x-ray for Ellie.  On the way there, I ran into a friend from church (Shellie) who works at Children’s and she got to check out Ellie a bit.  It’s always nice to see a familiar face!  I wish I had a picture of her getting her x-ray… I held her hands up over her head in a “touchdown” position for it and she just laid there all awake looking around like “what are you doing, Mom?” 

After the x-ray, we went back to cardiology and weighed Ellie.  She weighed 6 pounds 12.5 ounces… which is less than she weighed a week before at the pediatrician, but not much less.  And they are measuring in grams and then converting for me, so it might have been a little wonky.  Dr. Luby came in and looked over Ellie and asked me a lot of questions about her behavior.  I explained that she’d started sweating during feedings on Thursday and that she’d started retracting on Saturday night.  She was getting sleepier and sleepier during feedings and was now only nursing on one side.  Dr. Luby listened to and watched her breathe for a while.  I said, “Am I crazy?  Is this what I was supposed to be looking for?”  Dr. Luby reassured me that this was exactly what I was supposed to look for and thanked me for calling her.  She said that she’d ordered a chest x-ray on Ellie just to confirm what we were seeing is confirmed in what they can see on the x-ray.  The x-ray showed that the veins/arteries in Ellie’s lungs were under pressure (pulmonary hypertension), which causes her lungs to feel “wet and heavy” she said.  And wet, heavy lungs tire Ellie out quickly, especially during feedings.  The solution: we need to start medication.  No biggie.  She needs 2 different diuretics twice daily (one is meant to hold on to potassium, the other, a true diuretic to help decrease the pressure in her lungs).  The doses are tiny and given orally (which is easy enough).  Have I told you yet how much we love our cardiologist?  She’s very personable.  She’s very calm and soft spoken, but her laughter can fill the room.  She told me that anytime I had a question of was unsure; I was always welcome to call.  I should never feel like a bother because questions and phone calls show that we’re being diligent and gives her the confidence that we’re staying on top of this.  Ahhh – what a relief!  I don’t plan to bother her often, but I appreciate that she is so reassuring.

Dr. Luby said we’ll reevaluate next week and the medication doses may be adjusted.  She also said that if Ellie isn't putting on enough weight, we may need to start adding scoops of formula to breast milk to bump up her calorie intake without bumping up the volume she’s eating.  This brought about a conversation on weight gain.  Dr. Luby said that Ellie’s gained (on average) 14 grams per day since her last appointment (remember that a gram is about the weight of a paperclip… or an M&M).  I asked if this was good.  The doc said that it wasn't bad at all.  She’d like to see Ellie gaining around 20 grams per day, but with her symptoms, she’d expect her to only gain about 2 grams per day.  Good job, Ellie bug!!  I’m sure that some of this is weight is the water she’s been retaining, but I think this is still good progress.  So next week, we’ll see how much of that weight gets peed out as extra water and how much is all Ellie’s.  I have to say, her cheeks are a little less squishy than they were before, but I still feel like she’s eating a lot and hopefully stashing that weight on her little self.  Geesh, I don’t think I've ever had to worry about gaining enough weight – ha!  Ellie’s medicine had to be made at their pharmacy, and it’d take about an hour to do that, so I decided to leave and come back for that.  On my way out the door, I saw a family that we know from church who were there to take their little girl to a clinic.  They let me in on a few little insider tricks to parking and such and were so very sweet.  I was thankful to see them there and connect with them.  Their little girl has some hurdles, too, and they are a wealth of knowledge with their 4 years of experience coming to this hospital regularly.  They explained to me how the clinics work; which is fabulous because I know Ellie will attend the Down syndrome clinic soon.  They also gave me a book of parking passes… which was very kind and much appreciated!  I think this family is going to be a rock for ours – love them so very much!

I had to pick up her birth certificate while I was in Dayton, because I had to go to the Montgomery County office since she was born in Dayton.  I am NOT made to drive in “city” traffic… for real… you can’t make a left turn… EVER!  But I did find the building and had no problem getting in and getting her birth certificate.  I had to send Brandon a message to say that the line to request vital statistics wasn't long at all… the adult probation line, on the other hand, was a different story.  Okay, that was mean, but really – that office looked extra busy on Wednesday!

After that adventure, I headed back to Children’s to pick up Ellie’s prescriptions and head to mom & dad’s house to pick up the boys.  By the time I’d made it back to their house, I’d been gone for 5 hours… whoa!  That sure ate up a day.  When we got home, there was a package on our porch.  A friend that I hadn't seen for a long time (Julie) had sent us the sweetest card, along with a children’s book.  Her little brother was born with Down syndrome and her parents read this book to her and her siblings after he was born.  I read it to my boys right away, and let the tears stream down my face because it was so perfect.  The book is called “We’ll Paint the Octopus Red” and is about a 6-year-old little girl who finds out she’s having a new sibling soon.  She thinks of all the things this little one will be able to do with her (feed the calves, visit their aunt, play kickball, go on a safari, etc.) and is ready to be a big sister.  When her Dad tells her that she has a little brother, and that her brother was born with Down syndrome, she isn't sure what it means… but knows that it has to be bad news.  So she tells her dad that “Isaac won’t be able to play kickball” to which Dad says, “It may take Isaac longer to learn to walk, but I think he’ll be able to kick a ball with you when he’s older”.  She proceeds to go through her whole list of things that she thinks he’s not going to be able to do.  Her dad assures her that Isaac will be able to do all of the things that she wants to do with him as long as they’re patient with him and help him when he needs help.  At this, the big sister says, “By the time we were done talking, we couldn't find one of those million things that Isaac wouldn't be able to do.”  Julie was right – this is the perfect book to help our boys understand that Ellie may need some extra help, but she’ll be able to do everything they do, with time.  Julie said it was “Simple - just as it should be.”  She’s exactly right! The boys love the story.

On Thursday morning, we had a group from Early Intervention come over to the house.  I told the boys that they had to be good while therapists came over the help Ellie.  We saw Ashley, from Help Me Grow, Tonia, the intake coordinator of the Early Intervention program, Andrea, a physical therapist, Kendra, an occupational therapist, and Sarah, our Early Intervention specialist.  They asked me a ton of questions and looked over Ellie.  They showed me a few things that we could do to help her with her coordination and help stimulate her and strengthen her.  It was fabulous and I really felt like we had a whole team of people who have the same goals we have for Ellie.  Our boys thought this was a big play date, I think.  They asked Sarah all about the keys on her key chain and tried to get all of the “tools” (aka toys) out of the tub that Kendra brought.  Ashley played with the boys and tied their blankets over their shoulders as superhero capes.  LOVE!  I was able to get all of my questions answered and I’m super excited to get the ball rolling on all of this so soon.  And I was very excited that Andrea said Ellie is almost on par with her “typical” peers as far as movement goes for now.  Good job, Ellie bug!  

Afterwards, I talked with the boys and showed them how they could help me work with Ellie and help her learn to do all the things that they do.  Lance said, “Like Isaac in my book?”  “Yes, baby… just like Isaac.”

09.25.14: Getting Ellie ready for bed.  When people see her they say, "She looks bigger in pictures".  So, here is one to give you an idea of how much of a peanut she is.  Her torso is only as long as our remote (big compared to our friends who have had preemies, but tiny compared to our boys).

09.26.14:  This is Ellie's "2 a.m. means nothing to me, Mommy" face.  After starting medicine, she's been waking up a little before my "feed Ellie" alarms most nights.  This is a welcome change.  It doesn't mean I get any more sleep... but it does mean that Ellie has more energy and is able to let me know when she wants to eat sometimes!  This little bug is worth every sleepless night - and this night, she was up about every hour and a half!

First little bumps in the road

As I mentioned in our last post, Ellie has been doing great.  At her 2 week appointment she’d surpassed her birth weight and was doing peachy keen.  The next day (Thursday, 9/18), Ellie showed her first signs of distress – at 15 days old.  I was feeding her and watching her brothers run around the living room like the crazy monsters they are.  When she finished nursing, I brought her up to my face to kiss her head before readjusting her to switch sides.  When I kissed her forehead, she was covered in sweat.  My heart broke a little because I knew that this was one of the first signs we are supposed to be on the lookout for (sweating across her brow while she’s eating).  I wiped it away and sucked up my feelings and switched sides for her.  Again, she was sweating through the rest of the feeding.  Dang it!  She did the same at the following feeding (which I was finishing up right before B came home from work).

He walked in and sat on the loveseat across from me.  I felt my voice start to crack as I told him that she showed signs of distress.  He let me cry… but assured me that this was part of what we were expecting and we have a team of doctors that were there to help us.  For whatever reason, I was okay when I sat alone with Ellie, internalizing the heartbreak of watching her struggle, but as soon as I had to admit that to someone else… even my husband, I lost it.  It was like having that secret between Ellie and I (just for a few hours) was bearable, but letting someone else in on that vulnerability was painful.

Don’t get me wrong… I’m so thankful that our first 2 weeks were symptom-free (outward symptoms, at least).  That is fantastic.  I just wish we had more than two weeks of “she’s doing GREAT”.  She’s a tough little booger and is still doing okay, but we’ve begun to feel those bumps in the road.  She didn’t bead up in a full-on sweat at her night feedings, but she got clammy.  She’s done one or the other for all of her feedings since.  I called the cardiologist on Friday morning and she said that she’d note the symptoms in Ellie’s chart, but we could still keep our appointment on the 29^th to evaluate Ellie again and see if we needed to start medication yet.

On Saturday, I went to the Springfield Extravaganza with my sisters and a bunch of our kiddos.  Aside from the meltdowns my boys had, we had a fabulous time and got in plenty of walking and treasure hunting.  Afterwards, we met at my parent’s house to celebrate my oldest nephew’s birthday.  I was standing around the counter with my sisters and Ellie was lying out on the counter so we could all check her out.  This is the first time that I noticed that she had started to retract while breathing.  This means that when she takes a breath, her ribs suck in instead of expanding outward.  Her upper abdomen is also getting sucked up a bit under her diaphragm.  Since Saturday, this has become the norm for Ellie… another sign of respiratory distress.  Again, I felt like we’ve been a little defeated, but also knew this was part of what we should expect with the heart defect she has.  I always know that things could be worse… that’s for sure… but dang it, they could be better too.  I hate that I feel that way, but if I’m being honest… that’s the ugly truth. 

On Sunday, we had a fabulous sermon at church and I took the time to surrender our marriage, our finances, our future,  my fear, and of course, our children and health to God.  I talked with some close friends afterwards about being bummed out – and talking about it again made things a little more bearable.  I’m hoping that the more I share, the lighter the load feels.  It feels so backwards to me, but it seems to be working so far.  Thank you for following along – and thank you all because somehow, you are all helping us unload this weight of worry and fear and doubt.  We love you for that!  On Sunday night we had some fabulous company that came over and brought some dinner for us… and because they have 3 kiddos the same ages as ours, they made us feel a little more normal in the midst of chaos.  Love!

I’ll probably update you all later this week because Ellie has her first assessment for therapy on Thursday.  She also has her first physical therapy and occupational therapy appointments.  They’re coming to our house for these, and I’m super excited to learn how to help Ellie.  Did I mention yet that I have a massage therapist who is going to teach me how to do infant massage on Ellie?  I can’t wait to do this.  I think Ellie bug will love it!  Until next time…

Growing like crazy!

Ellie was 1 week old in this pic - and her hair is strawberry blonde

We were excited last week when (at 8 days old) Ellie was already up to her birth weight of 6 pounds, 8 ounces.  We were thrilled when we checked her in for her cardiology appointment on Monday and she weighed 6 pounds, 9.6 ounces.  Grow baby, grow!  Ellie got her first EKG on Monday and everything looked as expected.  Her oxygen saturation was 91%.  Dr. Abdurrahman (her name is actually Lubabatu Abdurrahman... we either call her Dr. Abdurrahman or Dr. Luby) said that Ellie was looking great.  She doesn't need any medication right now, but they'll reevaluate her every two weeks and adjust recommendations for us as needed.  Dr. Abdurrahman reminded me that things will get worse as time goes on, but for now, Ellie's growing and functioning beautifully!  Ellie has what Dr. Abdurrahman called the "garden variety A-V canal defect"... can I tell you how wonderful it was to hear that the defect was the "normal" kind when so much feels so far from normal to us?  Ha!  Weird how simple things like that are comforting, right?  Dr. Luby had to cuddle on Ellie a bit, which was too adorable.

Ellie's 1st EKG - the leads were only the size of my pinky nail

Dr. Luby was giving Ellie squishies - they both loved it!

After this appointment, I picked up the boys and headed up to Wapak to get adjustments for us all.  We hadn't been in for adjustments since Ellie was born and I knew that I was desperate for one.  Our boys were doing alright, but Ellie surely needed an adjustment after delivery (which has to be one of the most traumatic things for your head and spine, right?).  We felt fabulous as we left Dr. Josh's office.  They took some pictures for us to remember Ellie's first adjustment.

Ellie's 1st adjustment - the boys are old pros now

After this, we went to Tracy & Josh's house to celebrate Jared's birthday.  For those of you who don't know our family well, Jared was born on September 15, 2004.  He was here with us for less than six months.  When I think about Jared and think about Tracy and Josh as parents, it puts all of this into perspective.  While we have hard days and we have days when things seem unfair (mostly when I think of Ellie's future), nothing, NOTHING we experience will ever come close to what they've gone through.  Every year we get together on Jared's birthday and send balloons to heaven for him.  He would have been 10 years old on Monday.  It's scary how fast time slips away.  Gosh!

Today (Wednesday), Ellie had her 2 week appointment and got to meet Dr. Weber.  Ellie weighed 6 pounds 14 ounces at her appointment today - holy moly!  She's gaining weight very well.  We also found out that her initial blood tests showed that her thyroid is functioning normally.  Celebrations!  Hypothyroidism is relatively common in kiddos with Down syndrome.  We don't have to test again until Ellie is a year old.  Today, her oxygen saturation was 93% - fantastic!  We also have referrals for the Down syndrome clinic that is at Dayton Children's and they're pushing to get her the Synagis shot (which prevents RSV).  This is a monthly shot that she'd get during RSV season - still waiting to see if she gets approved for those.  Tonight, I'm just sitting here looking at how stinkin' adorable our little bug is all wrapped in a swaddler.  Ugh - heart overflowing :).  Thank you so much for reading along today.

Ellie is much stronger now than she was 2 weeks ago.  She has more head control and is really able to move her limbs around... which is why she now has scratches on her face.  Poor girl used her long, pretty nails on her face.  You can still see that strawberry blonde in those eyebrows, huh?

Can't get enough of that hospital food... I guess

So as we said in our last post, we were released from the hospital late Friday night.  We woke up on Saturday morning and spent the day cherishing our new family of five.  In the afternoon, I laid down on the couch and took a nap with Ellie.  When I woke up, my chest felt tight (like the muscles between my ribs were really sore) and it was hard to take a deep breath.  I figured I slept weird or that my muscles were sore from hunching over to nurse.  Soon afterwards, I started getting a nasty headache.  Headache is a bad way to describe it... it was more like a migraine.  I hadn't had migraines since we started going to the chiropractor over 2.5 years ago.  This was not a welcome thing, but I took some ibuprofen and hoped that it would go away.  The migraine waived some, but never went away.  When I'd lay down, the headache would get stronger.  I told Brandon that I was freaked out that when I laid down to go to bed at night, I could feel my heart beating in my chest.

Sunday came and the headache was still there.  I kept up on the doses of ibuprofen that had been suggested for postpartum pain.  I was pleasantly surprised that I didn't have hardly any of the same pains that I'd had with my first two deliveries.  I felt rather human already (aside from the headaches and sore ribs).  I was able to do things around the house and was getting more rest than I remember getting with the boys.  By the end of the day on Sunday I started to worry that the pain I had in my upper back, ribs and head may have something to do with getting 2 epidurals.  This was terrifying for me.  I looked up signs for meningitis... and was thankful that I didn't have a fever.  I know - ridiculous - but I'd never felt like this.  If this was my first child, I wouldn't know that the feelings I was having weren't normal postpartum pains.

Ellie bug in her Browns attire on Sunday.

I decided to not take any fever reducers on Monday to make sure that I really didn't have a fever.  By lunch time, the headache was absolutely unbearable.  I called Perinatal Partners to ask about my symptoms.  They told me to stop in the office at the next available time slot... which was less than an hour away.  I asked if it'd be okay for me to bring the kiddos with me.  Of course... since it would only be a quick appointment.

When I went in for the appointment, they took my blood pressure and tested my urine.  I had protein in my urine and my blood pressure was high.  Along with the headaches, I was showing signs of pre-eclampsia.  Dr. Kovac came in and told me that I'd have to go back to Miami Valley and they'd have to admit me and monitor me for 24 hours.  Normally, pre-eclampsia happens during pregnancy and the cure for it is delivery.  In rare cases, though, you can get pre-eclampsia after delivery.  Lucky me!  My blood pressure is usually 110/70 or lower.  In the office is was 150/90.

I called my parents and asked them to pick up my boys in Vandalia and apologized because I was only planning on going out for a few minutes... so I had no extra diapers for Kaleb or clothes for either of the boys.  Dad came down with Emily to pick them up.  He loaded up the boys and drove them back to their house.  Emily hopped in my van and drove me and Ellie to Miami Valley.  She stayed with me until Brandon was able to make it there after work (and stopping at the house to pick up some clothes for Ellie other essentials).  My BP got as high as 172/105 that night.  We were admitted and they gave me fioricet for the headache (which worked) and put me on a magnesium drip to help lower my blood pressure.  Tuesday was pretty dull.  The magnesium played all kinds of tricks on my vision.  I was still sensitive to light and sound and was now seeing double - so I couldn't really read or watch tv.  Ellie and I enjoyed a quiet day of nothing but snuggles.  This was pretty relaxing, really.  Brandon stayed with me each night and we were finally released on Wednesday afternoon.  We joked that if we hadn't already met our out-of-pocket max on our insurance plan this year... we met it now.  Seven days in the hospital would do that, I'd say.

Ellie hanging out w/ Mommy - quiet time is hard to come by for us :)

On Thursday, Ellie had her first appointment (finally) and she was already back up to her birth weight (bonus!).  We also had an appointment with Jenny, the BCMH nurse with the Health Department, on Thursday afternoon.  Jenny is getting everything from our hospital stay squared away for us.  Thank goodness!

We have 3 appointments next week: cardiology, a follow-up appointment for me, and Ellie's 2-week appointment.  We were also able to talk to Ashley at the Health Department and we're waiting to get an assessment done for Ellie so that she can start therapy.  How exciting!

Ellie is Here!

I meant to update this while we were in the hospital, but it always sounds like we’ll have more down time in the hospital that we actually do.  Anyhow, here’s a recap of what has happened during Ellie's first few days (this is a long post, sorry).

Monday (Labor Day) night we took the kids out to dinner as our last outing as a family of 4.  Crazy, right?  We enjoyed some yummy Mexican food together.

Tuesday B and I went to work for the day.  Tracy came over to pick up our boys after work so that we could get ready to go to the hospital.  We were set for an induction at 8pm.  Once checked into our room, they started an IV and when the doc came in to check progress and get us ready for a Foley catheter induction, I was already at 3 cm, which is what the Foley is meant to achieve.  So, we didn’t have to go that route (celebrations).  We’d just sit tight and wait until the morning to start Pitocin.  Everything looked great on the monitors through the night and Pitocin started around 7am.  Around 8am, they started having trouble with the heart rate monitor.  It looked like Ellie’s heart rate was dipping down to the 50s, then rebounding back into the high 180s or 190s.  The audible beeping was still tracking okay, but they needed to be able to watch the monitor from the nurses’ station.  Dr. McKenna came in and did a quick ultrasound to make sure Ellie’s heart was doing alright, and it was, but said that they’d need to break my water and use an internal monitor on Ellie’s scalp to get an accurate reading on her heart rate through labor.  My water was broken around 9:30am, which made my contractions much more severe.  At this point, we’d progressed to about 4 cm.  My parents and Brandon’s parents headed down to sit with us for the day.  An anesthesia resident came down to start an epidural soon afterwards… but the epidural didn’t take.  Contractions became much more severe and I waited (not so patiently) for another epidural.  The anesthesiologist came in to start another epidural.  This one took, thank goodness, but because of the blockage caused by the first one, the 2^nd one only covered the left side of my body.  I could still feel full contractions on the right.  Not unbearable – I could focus and breathe through them, but it was weird to feel it just on half of my body.  

At noon, my nurse came back in and said the anesthesiologist was headed back my way to give me something for the right side.  In the meantime, she’d check progress again.  We were now at 6cm and progressing well.  Brandon and our parents had just come back into the room from getting lunch.  Instantly, my pain level went through the roof.  I could feel unbelievable pressure and the contractions on my right side were now so strong that I was gripping the side of the bed, laying on my side, and couldn’t focus on much at all.  The nurse brought in the OB resident (Dr. Brahman) to check progress again.  By this point, we were complete… ready to start pushing.  Holy cow – did that all happen in 30 minutes?  They got the team ready and rolled me down the hall into the OR.  On the way there, I let my nurse know that I was trying hard to keep from pushing… they picked up the pace so they were now running to the OR.  By the time they broke the bed down and got everyone in their OR garb, we were pushing.  About 4 minutes later, Ellie arrived at 12:52pm!  Uhh… she’s my favorite child now… kidding.  But everything went so fast that we weren’t able to get many pictures when she was born.  I was able to feel exactly what was going on this time, though… if only on the right side.  [side note: Lance was about 30 hours of labor, then just under 3 hours of pushing.  Kaleb was about 8 hours of labor, and 20 minutes of pushing.  Ellie was around 4 hours of labor total and less than 4 minutes of pushing.]

I didn’t get to hold her right away, they lifted her up so that I could see her, but then took her into the adjacent NICU room.  Brandon and mom were able to go see her, but even at that, there were so many people checking her out, that they weren’t able to really get close.  Once the docs were done with me, I was wheeled into the NICU room and they handed Ellie to me (all bundled up).  She weighed 6 pounds, 8 ounces at birth (almost 2 pounds smaller than our boys).  I only got to hold her for a minute or two, though, as there were twins being delivered in the other connected OR.  We needed to clear out. Ellie looked okay, but they needed to monitor her in the NICU.  I was wheeled back to my labor room for recovery and was able to eat some lunch while B went down into the NICU with both sets of parents to check on Ellie.  They came back with pictures for me.  Around 3:45, I was able to leave my room and was wheeled down to the NICU while B, his parents, and my dad brought our stuff to our postpartum room.

Shortly after birth.

When mom and I arrived in the NICU, they were finishing up Ellie’s echocardiogram.  We’d have to wait to hear from our cardiologist later in the night on the results.  Ellie was still covered in vernix (a waxy coating on the skin), but I could see that she had a lot of hair (not so much on top) and she had extra-long nails on her fingers and toes.  She was beautiful!  I was able to hold her skin to skin and she nursed a little for me.  At this point, her breathing and heart rate were looking good, but her oxygen saturation was fluctuating greatly.  For a “typical” baby, they want the oxygen saturation to be above 90% for sure.  For Ellie, the NICU team was shooting for it to stay above 80%.  In the first few hours, it floated anywhere from about 60% to 85%.  Anytime she would cough or cry… or try to work up a burp, her O2 levels dropped and set off alarms.  Scary stuff, but the nurses were showing us ways to open her airway and help those levels increase again.  I went back up to the room to get B and to let our parents go home… then after dinner, B and I came back down to the NICU to get our cuddles in.  We came down in time to see our cardiologist checking Ellie out.  Dr. Luby said that Ellie looks great.  The echo on her looked a little different than the prenatal echoes, but nothing to be alarmed about.  The right chambers of Ellie’s heart are a little smaller than initially thought, and there was slight leakage in her A-V valve (but not even enough to hear with a stethoscope).  The smaller right chambers could be accounted for and adjusted some when Ellie has surgery down the road.  Good news!!  They had inserted a feeding tube in Ellie’s nose so that they could give her additional fluids through the night to keep her hydrated.  Her hematocrit count was high and they wanted to make sure she had plenty of fluids that would help keep her oxygen levels up.

Ellie getting skin-to-skin time with Daddy

We were both able to cuddle Ellie and give her plenty of skin-to-skin time with us.  She’d have to spend the night in the NICU, though.  B and I were up before 6am on Thursday and were able to shower and get some snacks before heading down to the NICU again to snuggle our baby girl.  We came back up for a late breakfast and were back in the NICU right away.  In Miami Valley, each baby has his/her own NICU room, so we had plenty of privacy with her.  Ellie was able to nurse, and we were able to give her the pumped colostum from the night before through her feeding tube.  It wasn’t much, but that stuff is liquid gold and I wanted to get her as much as possible.  The neonatologist, Dr. Belcastro, came in and talked to us about how Ellie was doing.  He said that her saturation levels stayed between 85 and 90% through the night and that as long as she could do well without the feeding tube and nursing directly, she’d be able to come to our room.  She had to prove that she could handle this for 8 hours (noon to 8pm).  We fed her just before lunch, then headed up to our room so that we could eat.  We had a big afternoon with our little bug.  We said lots of prayers and held her pretty much the entire time.  Her oxygen levels stayed up well for us (except when she needed to burp) and she was eating well for me.  We had some visitors come in and squeeze on Ellie, too – including Lance (Kaleb couldn’t come back because he is under 3 years old).  Very sweet! 

We left the NICU around 7pm so that the team could make rounds and decide if she was healthy enough to come to our room.  Around 8:45, our nurse told us that she’d be wheeled up to stay in our room for the night.  In total, Ellie spent about 30 hours in the NICU – not too shabby at all!

Skin-to-skin snuggles with Mommy

Getting the colostrum into Ellie's feeding tube

 Smiles for Aunt Tracy

 Cuddles for Aunt Emily

Kisses from Lance

That night, Ellie was doing great.  Her nurse came in around 1 am (just as I was putting Ellie back into the crib after nursing and cuddling).  She needed to take Ellie to the nursery to do some tests on her and asked if she could keep her there until the next feeding.  I agreed… but told her that I needed her back at 3am for the next feeding.  My alarm went off… and I waited… and waited.  Finally, I called my nurse at 3:45 and asked if I could have Ellie back to nurse.  Ellie’s nurse came back with her, but said that they were worried about Ellie because her O2 levels were low.  I asked how low, and the nurse said they were in the low 90s.  I said, “Hey, that’s fantastic for her”.  The nurse didn’t think so.  She said that Ellie was turning blue around the mouth when she got upset.  Yes… this was standard for Ellie, too.  Anyhow, they had me go into the nursery to nurse Ellie on the monitors again, but since we were on the transitional floor, the nurses in this nursery were coming up from the NICU to help out.  The nurses in the NICU had been with Ellie the day before and knew that the doctors were trying to keep her above 80%.  I’m thankful that the first nurse was concerned.  She was just going by the standards they use for the rest of the babies in the “typical” nursery… not the same standards that they used for Ellie in the NICU.  Either way, Ellie did fine on the monitors and was able to come back to my room with me after nursing. 

Friday was a rough day… after constant interruptions and going back to the nursery through the night, I had very VERY little sleep.  We did get pictures, though... Julie Davidson from Bella Baby Photography was amazing!  Ellie had another echo done (looked great, again) and we were finally released to go home around 7:30pm.  We made it home just before 9pm and my parents met us at home with our sleeping boys.

Lance didn’t wake up at all.  Kaleb woke up to see us, but was not crazy about Ellie right away.  After refusing to touch her for 10 minutes or so, he started to give her kisses and hold her hands.  Then he didn’t stop giving her kisses and laying his cheek against her head.  I think he’s in love!  Whew – time to rest and enjoy home life as a family of 5… yeah, crazy… FIVE!!  Thank you for all of your prayers and thoughts.  We know that each one was crucial in getting us all through these first few days.  We love you - thank you so much for following along.

And here is Ellie's birth announcement:

not in LABOR toDAY

Welp, I see that it’s now been 2 weeks since my last update – sorry.  Since our last update, just after our 37-week appointment, things have gone pretty well.  On Monday, August 18^th, we had another ultrasound to measure fluids for Ellie… and the fluid level had gone up from 5.6 cm to 6.3 cm… which is good.  We were no longer on that borderline where the fluid needed to be watched so closely.  They’d check it again in a week.  Ellie & I had another appointment on the 21^st (38 weeks) and were able to meet Dr. Glover (another possible doc for delivery).  Dr. Glover was awesome – I have yet to meet a doctor that I’m not crazy about in this journey.  Ellie did great for the non-stress test and we discussed in detail the plan for the induction on 9/2.  We’d arrive at 8 pm, get checked into the room and such, and they’d start the induction using a foley catheter.  At some point through the night, they’d also start Pitocin to get contractions going, and we should have a delivery sometime on Wednesday, 9/3.  Sounded good to me!

The next morning I woke up with strong contractions, severe nausea, and other flu-like symptoms (I’ll spare you details).  I told B before he left for work that I wasn't feeling well and that my contractions were so strong that I couldn't stand up straight in the shower when they hit.  We brushed this off because I’d been having random contractions for so long (and did the same with the boys).  I’d call him if things progressed much.  About 2 hours later (around 8am), I called my mom to tell her what I was feeling and had just started writing down my contractions so that I could see how far apart they were.  I was trying to work and track these at the same time.  I also told mom about my other symptoms and she encouraged me to call the hospital and get their take on it.  I waited until 9 am to call, since the doctors’ office opened at 9.  By this time, contractions were consistently about 10 minutes apart, and strong.  I had to focus and breathe through them.  I held the boys at home with me because I wasn't sure what the day would bring.  When I called the office and talked to the nurse, I started to break down a bit.  My voice was shaking at one point and (with Kaleb having a meltdown in the background), I began to cry.  She said, “Are you okay?  Do they hurt so bad that you’re crying?”.  I said, “No – they’re painful, but I’m crying because I feel totally overwhelmed right now and I have a toddler having a meltdown in the next room… and I've never gone into labor on my own… this is scary when I’m by myself.”.  Poor lady.  Ha!  She was very sweet, though.  She told me that she’d check with the doctor and call me back – allowing me time to take care of Kaleb.  She called back to say that Dr. Glover asked that we come down to at least get put on the monitors and check progress.  I called B to have him head home from work, and everything just started to get very real in my mind (key the start of a small panic attack).  I called mom to say they wanted us to come into the hospital and she let me know that she and Tracy were already on their way to our house.  God bless them!!  I ran around the house trying to pull together a few things that we hadn't packed yet… or weren't in the car.  I’m pretty sure I’d broken a sweat by the time Mom & Tracy were here.  I’d gotten sick a few more times and the contractions were getting stronger and closer.  I wasn't timing them anymore.  Tracy asked how close they were and I said “I don’t know”.  She said, “Are you afraid to time them because you know they’re getting closer?”  “Maybe.”  She helped me pack my bathroom stuff up and stared at me with 100% understanding as I held on to the bathroom vanity to breathe through another contraction.  This is about when B showed up and started packing the stuff I’d gathered into the van.  I shared hugs with Mom & Tracy before we left and let them know that I was absolutely terrified.  First, because I’d never done this (labored without an induction) before, and also because I was worried about Ellie.  Ugh – I've really got to get over this fear thing.

As B drove to the hospital (which is a good hour away), he was trying to lighten the mood and tried to make me laugh.  When he realized that I was just trying to not break down, he changed the tone and went into “get there fast” mode.  He kept asking how far apart my contractions were, and I tried to time them, but I was just looking at the clock… them my mind would go crazy between contractions and by the time I’d look again, I had forgotten when the last one was.  By the time we were in Troy (about 20 minutes away), I told him I couldn't focus long enough to remember.  I tried a little harder, but was still spacey – I guessed they were about 6 minutes apart.  About 40 minutes into the drive, he gave me his phone, set up in stop watch mode.  Now I could be a little more exact.  By this time, the contractions were much stronger and were coming about 4 minutes apart – whoa!  I was not ready for this to go so fast.  He started driving a little faster and we were now in Dayton, which is not ideal for driving – EVER.  I was trying to tell him how to get to the hospital and focus through contractions… I may have said a choice word or two about the stopped construction traffic around our exit… oops. 

By the time we arrived at Miami Valley, it was hard for me to get out of the van and walk to the registration desk.  I got checked in quick and then wheeled up to a maternity triage kind of room.  I guess I’d describe it as an observation room… but with several beds, separated by curtains.  Remember, I’d only delivered in Sidney and they’re all about the small, private spaces.  I guess when the hospital delivers 5,000 babies a year, things are a bit different.  They took my vitals and told me that I was dehydrated.  I let them know about my symptoms that morning and that every time I’d try to drink water, eat… anything… that my system was kicking it all out.  They gave me a dose of Phenergan for nausea and started an IV for fluids.  They checked for progress – nothing.  The resident (I didn't catch her name) said that they’d push the fluids, but since they didn't want to admit us until we were in active labor (so… they needed to see some progress, not just contractions), they’d let us go home in a few hours.  I couldn't believe that we didn't have any progress.  I think I would have been frustrated, but the Phenergan knocked me out.  Dr. Glover said that we should go into a room and that they’d keep us until about dinner time so that they could monitor us.  They didn't want us to get all the way home and have to turn around and come back.  So I spent the next 6 hours sleeping… I could barely stay awake long enough to talk to the nurses as they came in.  Sure enough, the contractions faded as I slept and around 5:30 pm, we were released to go home. 

I really thought we were having a baby that day.  I guess this was just Ellie’s way of letting us know that she’s going to do things according to her own schedule.  And as much as I really wanted that “Oh my gosh… it’s time to go to the hospital” moment… I kind of think it’s a little overrated now.  It was way scarier than I’d imagined.  Maybe it was Ellie’s way of showing her Daddy how to get to the hospital in a rush and her way of allowing me to have my little panic attack before her real arrival.  Dry run, I guess. 

The following week was much less eventful – thank goodness!  We had more appointments with fluid measurements consistent with the previous week - we got to have an ultrasound with Lara again (just love her) and she estimated Ellie's weight at 7 pounds 3 ounces, but the closer we get to our due date, the less accurate the ultrasound measurements become - because of Ellie's position and the shadows that bones now throw into the ultrasound picture, I guess.  We haven't been able to see Ellie's face in weeks because of her position - so I cannot wait to see those cheeks again!  On Thursday, 8/28, we had our last prenatal appointment.  What??  I didn't think we’d ever see the end of appointments for this pregnancy.  We got to meet Dr. McKenna (the 3rd and final doctor we could have) and of course, he's just as fabulous as the rest.  My nieces also helped me make a TON of monster cookies to bring to the hospital to share with visitors and hospital staff (I mean… I’m not bribing anyone here… but I will have cookies for visitors).  We capped off our week with another busy weekend.  I’m now to that super tired point (much like the first trimester).  I tried to help with home improvement projects, but wasn't much help to B.  I had a busy day with the boys on Saturday and helped (liberal use of the word "helped") with preparations at Mom & Dad's house for Sunday.  Sunday brought church, then family nap time (awesome!), then a family reunion for my mom’s side of the family - which is what we were prepping for on Saturday.  When my grandma saw me, she said “Oh!” surprised by how pregnant I look, I think.  I told her that we’d have a baby on Wednesday sometime, which wasn't a surprise to her at all.  I think she’s always ready to have more great grand babies.  In case you don’t know my family, my mom’s side is huge.  My grandparents had 8 kids and that led to lots of grand kids, lots and lots of great-grand kids, and some great-great-grand kids already.  Below is a picture of grandma with her great-grand babies… and this is NOT all of them.  We had several families who were not able to make it, so there are at least 16 great-grand babies missing here.  It may have been hot, but it was a wonderful day for family and we got to catch up with some people we rarely get to see.  Feeling very blessed to be a part of this family. 

They tried to get me to jump into this picture... just my belly... 

so that Ellie could be included with the other great grand kids. 

A tree w/ thumbprints of everyone present... how cool is this?  104 thumbprints in all!

This is Uncle Leo's train.  What a big hit with the kiddos!  Tracy was taking them around this time.

As I’m writing this on Labor Day, I realize that I have one more day of work – then the induction tomorrow night.  I think I’m ready this time… thank goodness we got those jittery nerves out a week and a half ago.  I’ll update several times this week, I’m sure.  The next update should include pictures of Miss Elizabeth Kate.  Thank you for following along.