Bringing Home Baby Zoe

We have had our beautiful baby girl home for 11 days now!  

 {Take Home Day}

It has been quite the adjustment as we are used to having nurses around to manage all of her care.  Now we are flying solo and it is a lot of sweat, with little sleep... but it's all worth it, just to be home together.

Here is Zoe's daily routine, without the unpredictable... such as, diaper changes and naps.

12AM: Feeding

3AM: Feeding

6AM: Feeding

9AM: Check placement of feeding tube in stomach, 7 medications (Lasix, Keflex, Spironolactone, Captopril, Digoxin, Aspirin and Tylenol) through NG tube, 70 mils of fortified mother's milk in bottle and then through NG tube, Wound dressing change

12PM: Feeding

3PM: Keflex, Captopril, Tylenol, Feeding

6PM: Feeding

9PM: Lasix, Keflex, Spironolactone, Captopril, Digoxin, Tylenol, Feeding, Wound dressing change

{First time in the bassinet}

This schedule has been really tough to get used to... for more reasons than one.  Since she is struggling with weight gain, it is really important to stick to feedings every 3 hours.  This is most difficult when both Zoe and I are snoozing through the night and the alarm goes off for another feed.  As important as I know it is to stick to the schedule, it just seems sick and wrong to wake a sleeping baby!  The meds were overwhelming for the first few days, but now it's a breeze... mostly because they just go down her NG tube.  Dressing changes are more exciting because her incision is finally showing significant progress and closing up!

{First time in the swing}

Another adjustment is all of Zoe's appointments.  Last week, she had four appointments - 3 in Portland and only 1 here in Sherwood.  With all the driving and coordinating care for Londyn, I asked myself a few times... Why did we leave the hospital again?

I wish I could go back in time and enjoy the simplicity of Londyn's newborn days.  What was I complaining about?  The grass is always greener!

Londyn is slowly adjusting to her new baby sister.  I think she thought that Zoe lived at the hospital.  She was content with the idea of being able to visit her and then be able to leave.  Now that Zoe has entered Lulu's territory, she has mixed feelings.  Within the first 48 hours of being home with Zoe, Londyn said "Baby Zoe needs to get out NOW!" She got past that initial attitude pretty quickly because she loves her sister.  She really has become such a huge help to me!  She throws Zoe's dirty diapers away, picks out her outfits, gets diapers and wipes when I need them and gets the pacifier when Zoe's crying.  At first, Londyn thought Zoe was going to be able to play with her... "Zoe play baby dolls with me?"  But, now whenever Londyn is doing something, she says "Baby Zoe can do this when she get bigger."

{This is us most days}

When Zoe cries, Londyn's usual response is "Baby Zoe want my dad." 

Here are a few other random things that she has come out with...

*My MIL will be flying out soon and Londyn said, "Nana Brendi come to my house and help clean." 
(I didn't think the house was in that bad of shape!)

*"When I get bigger, I be a mom and my boobies get bigger."  Seriously?!

*I had Zoe in the bassinet in my room and Londyn was downstairs watching a show.  I was in the bathroom and I heard tiny steps coming up the stairs.  When I hollered out, "Londyn... what are you doing?"  She said, "It's okay Mom - I looking at my sister!  I can't want to touch her, I just looking!"

*My favorite is when Londyn talks to Zoe on her own.  "Hi sweet girl" "Awww, you so tiny" "I love your hands baby Zoe" "You my favorite girl"

This last week was a doozy as soon as we received the news that Andrew's grandfather "Pamp" passed away.  We haven't seen his grandparents since we got married almost 4 years ago, so it was a blessing for Andrew to fly out to Massachusetts to celebrate the life of Robert Stevens along with his family.  His parents and 4 out of 6 siblings- Steph, Chris, Tanya and Jon were all able to attend.  It was really special for them to be together again, visit their old house and spent time with Gram and other relatives on the East Coast. 

Of course I wanted Andrew to go, but I was nervous to have him gone for 5 days.  It started off by taking Zoe to her appointment with our Cardiologist.  The good news was that he decided that she only needs to have her O2 on during that night when she is in a deeper sleep.  Wahoo!  The bad news is that the echo showed a blood clot at the end of where the Picc Line was placed.  It is not uncommon for heart babies to be prone to clotting and that is one of the reasons as to why she will take aspirin daily for the rest of her life, but it is not the best news because the clot can break up and travel either to her lungs or head.  Both places are not ideal.  Ideally, the clot will slowly get smaller and smaller and just go away on it's own.  Dr. King upped her baby aspirin dosage from 1/4 tablet to 1/2 tablet.  If when we return in two weeks, it has not changed... we will have to do Heparin Therapy, which means we will need to give her two shots daily of Heparin with the hopes that it will make the clot go away.

Because Zoe's oral feeding has not improved significantly, she will have a Gastrostomy Tube placed in the next few weeks.  This will be a feeding tube in her belly, which will make it much more comfortable for her and convenient for us to feed her.  She will need to be sedated for the procedure and have a 1-2 day hospital stay.  I am most excited about the pump that we will be getting at that point.  The pump will allow us to do a continuous drip feed throughout the night, reducing the up-all-night, frequent feeds on my part.

After we got home from the Cardiologist, I was so excited to take out her oxygen canula right away.  There was no change in her breathing or coloring throughout the rest of the day.  When it came nighttime, I put the canula back in and she cried and cried for an hour straight.  She was clearly uncomfortable.  Once I took it out, she was as happy as can be.  I used my mom instinct and made the call to just leave her be without the oxygen.  She did well all night and hasn't had it back in since.  I made sure to double check with our case manager today and she said she would get a pulse oximeter out to us, so we can at least do random sat checks throughout the night to make sure she doesn't drop too low.  

All day Friday, Londyn missed her daddy and kept asking when he was coming home.  

Saturday was interesting.  Londyn had a fever again... dejavu from last weekend.  At this point, I was pretty sure she had a UTI.  I kept her temp down with Tylenol and lots of fluids.  She was bouncing around and had no symptoms.  At about 6pm, she started to say that it hurt when she went potty.  I then knew I needed to take her in... but the Urgent Care closed at 7pm.  My mom was coming over to watch Zoe, so I could get a break and go to the high school Powderpuff game, where my niece Mikayla was playing as the Freshman Quarterback.  I was so bummed when I knew I wasn't going to be able to swing it.  After not showering for a few days... I at least needed to wash my hair.  I then rushed out the door with a mop of wet hair on my head, sweats on and a swipe of lip gloss.  The nurse at the Urgent Care taped a plastic bag to Londyn's business and then we waited... waited... and waited, hoping she would pee.  She didn't.  I think they all wanted to go home, so they gave us the prescription for antibiotics even without a urine sample to confirm a UTI.  Of course... ALL of the pharmacies were closed by 6PM (SERIOUSLY?!) so I drove to the nearest 24 hour pharmacy, which was about 20 minutes away.  Phew! So... it seems that I only get out of the house to see doctors... I guess it's better than nothing!

On top of the UTI, Lulu now has a fierce cold.

The last 6 weeks have been wild, but it is so worth it when I look at our sweet baby Zoe... sleeping peacefully.  Breathing.  I have always taken my healthy, breathing child for granted... and now that I have one that fights every day to achieve that very status... I am forever grateful for the tender mercies that lead us in that direction.  

{Sponge Bath Time}

1 comment:

Nicole Heiner said...

thank you for posting! wow you are so strong and amazing. I am so impressed with all you are doing! wow, what a mom!