Sunday, June 29, 2014

Two Weeks

Our baby turned two weeks old yesterday!  I have a small confession...I am pretty smitten with pink now. She just looks so darn cute in it :)  We are at the hospital now.  Wesley is holding Ellie while she snoozes.  Every so often she will let out an adorable quiet snore.

After 3 rounds of lasix, the doctors have told us that her lungs are still just immature and will need more time to grow in order for her to not need oxygen.  They are confident her PDA is still doing ok and not the cause of her needing the oxygen right now.

We have had a really great weekend just taking things slow and spending as much time with Ellie as we can.  The nurses tell us that her oxygen sats are much better when we are there.  We have done a lot of skin to skin therapy, we've gotten to change her diaper and put her outfit back on.  She is getting really good at holding on to our fingers and sucking on her pacifier.  We've read several books, like Dancing Feet and Pajama Time, and our daily read of The Little Engine that Could.  We also found a collection of Fairy Tales by Hans Christian Anderson in my sister's apartment, so last night we read The Princess and the Pea and Thumbalina (thanks Kelsey!).

With every minute we spend with her she feels more and more like ours.  It hasn't been ideal to be separated since she has been born, but it is nice that when I close my eyes I know exactly what she looks like, can picture mannerisms, and cute things that she is already doing.

Friday, June 27, 2014

Open Crib

Yesterday, Ellie officially graduated to an open crib - AKA her NICU "big girl bed."  This means that Ellie no longer needs help regulating her temperature - she can do it all by herself!  Her PICC line is also out, which means she no longer needs any other fluids other than the milk that she is getting through her NG tube (the orange tube that goes down her nose to her tummy).  She takes just about 1oz of milk with each feeding and she is fed every 3 hours.  I am trying to make my pumping schedule mirror her feeding schedule so that it will be easier once we start trying her on oral feeds (including pumping twice during the night).  They are thinking that she might be ready to try oral feeding late next week.  Before she does though, her vital signs have to be stable while she is being held and she needs to show signs of rooting and sucking during her feedings.  We are still working on this right now.  Whenever we hold her, especially if she is on her back, her sats drop into the 80s.  It is part of being a premie, and will just take time for her to be stable while being held. Anytime she shows signs of wanting to suck, they try to get a pacifier in her mouth to encourage it.  It is pretty darn cute :)

She had an x-ray 2 days ago that showed that her lungs are still immature.  She is still back on oxygen and is also on a 3 day run of lasix, which is a diuretic that will try and pull off any fluid that might be on her lungs that may be making it hard for her to breathe. (She is only 33 weeks after all.) Right now what she needs more than anything is just time.  Her body just needs to continue to grow and mature.  Once it does, she should be able to get off of the oxygen and start learning to feed orally.  They also set our mind at ease by explaining that she will have to go 5 days straight without her sats dropping, or heart rate slowing before they will let her go home.  It is the final step, so it is still far away, but we relaxed a little more when we heard that.

We are all doing well and just taking it one day at a time.  Ellie is going to go her speed.  Right now she loves being held, especially when she is on her tummy doing "kangaroo" with mommy.  She loves sucking on that pacifier when she is able to get it in her mouth.  She still loves to stretch and kick her feet, but also loves to be swaddled and bundled up.  She hates the oxygen tubing and tape on her face, but seems to have gotten used to it for the time being.  She looks more and more like Wesley every day, especially when she sleeps. She is such a good sleeper, and is very good at listening when we read her books.

We love you baby girl!!
 Grow Ellie grow!

Wednesday, June 25, 2014

Ups and Downs

We have had a rough couple of days.  Before I was discharged from the hospital, we heard several times, from several different people, that Ellie's stay in the NICU would have ups and downs.  She, and we, would have good days and bad days.  I will admit that she did so well last week and through the weekend that I was starting to think that the "downs" they talked about would simply not apply to her.  She was doing so well at progressing, faster than the doctors were anticipating, that all we had seen so far were "ups." We have quickly come to realize over the last couple of days how unrealistic my thought of Ellie not having downs was.  She is after all a premie, and as she continues to develop her journey will be more like the Little Engine That Could, instead of a jet streaming at a straight, steady pace to the finish line.

Our downs over the past few days have worn more emotionally on us than anything else.  Because all in all, she is still doing well.  She has had to go back on oxygen by nasal cannula.  The NICU physicians are still running tests to determine the underlying cause.  Today she is getting an x-ray to see if there could be fluid in her lungs.  If there is, they are going to stop her IV fluids because she is now getting enough breastmilk that she will not need them anymore.  The PDA (patent ductus arteriosus) she received indomethacin to treat could possibly take longer to close than they originally thought.  It also could be tugging on her pulmonary artery, causing it to not be as open as it should, and could also be the reason she is having a little trouble breathing again.  The biggest down has been the fact that  my post-partum hormones can, on a dime, throw rational thought out the window making things seem worse than they really are.  On Monday night, when we went to visit her, my post-partum hormones must have been in full swing.  We showed up to find her in clothes.  For about 30 seconds I thought it was so cute...and then all of a sudden I realized that this was the first time she had worn clothes and I was livid.  How dare they put my child in clothes without consulting me, or even asking me to pick out the outfit! It felt like a "first" that they had stolen from me. I pouted the whole time we were there about it.  Completely ridiculous?  Yes.  Entirely hormonal?  Of course.

Our ups over the past few days have been great ones.  On Monday morning, Ellie was moved to a smaller, quieter room.  They move the more "mature" babies to these rooms to provide more privacy to families.  It felt like such a success for us!  Even though she went back on oxygen, she gets to stay in that room :)  Ellie has done a great job progressing through her increases in feedings.  They are still increasing her by 2mL every 12 hours.  She is now up to 24mL!  Now that she is 33 weeks, as soon as she shows enough signs of her sucking reflex we can try breast or bottle feeding.  She is starting to show signs, so we are hopeful that the nurses will see it enough over the next week or two and we can start working on that goal.  Even though it made my hormonal self so mad at first, it actually is a really good thing that Ellie is ready for clothes.  It means that she is progressing in controlling her own body temperature.  The bed she is currently in is called an isolette and it temperature controlled.  Each day she has been in the NICU they have been slowly turning down the temperature to teach her to regulate her own temperature.  Soon it will be turned down as low as it can go and she will be ready to switch to an open crib!  I also cannot tell you how much I love having my mom up here with us right now.  She is such a great support to us.  She is so good at helping us stay positive, and taking care of me while Wesley is at work during the day.  I also have loved watching her with Ellie.  I know my transition into motherhood is going so well because I have the best roll model in the world!

We are so ready to take our little girl home!  I can't tell you how hard it is to be patient.  Each time we go for a visit, it gets harder and harder to leave.  She has completely stolen our heart.

Sunday, June 22, 2014

Bedtime routine

One of the first days that I was able to walk down to the NICU to see Ellie, her nurse that day told us about a book cart that was located near the nurses station.  She had seen a family establish a bedtime routine where they would come every night and read Goodnight Moon and say a prayer.  At that point in time Wesley and I were a little unsure of what to do with Ellie other then stare and smile and talk to her.  Her PICC line wasn't in yet, so we couldn't hold her.  We decided that a bedtime routine would be a good idea and a special time for the three of us.

So each time we go for our visit at night, we bring along a book and her bunny, Babette.  The diaper bag we got as a gift has been the perfect "visit Ellie" bag.  We usually get there in time for her 8PM assessment and feeding.  We get to change her diaper, find out her weight, and then settle down for some cuddling time.  While one of us holds her, the other reads her the book.  We have several good books that we rotate through.  The first book we ever read together was "The Foot Book."  A perfect Dr. Suess book that is all about one of Ellie's favorite things: feet!!  We tuck her in with a prayer, and kissess from mommy, daddy, and Babette.

Ellie has had a really great day today.  She is completely off of all respiratory support!  She has been sleeping well, loves being on her side, and her feedings are increasing steadily.  Way to go Miss Ellie!!!

Saturday, June 21, 2014

Skin to Skin Therapy

One of the best therapies for premies in the NICU is skin to skin therapy or "kangaroo care."  They literally open up the front of your shirt and drop your little one down in so that their bare skin is resting right on yours.  Then they put a blanket over top not only for privacy, but more importantly to keep baby's body temperature from dropping.  Cute hats are optional, but highly encouraged.  The one I chose for Ellie came from a small pile that have been donated to our NICU.  

Cute, isn't she!?!

Honestly I think that "kangaroo care" is just as therapeutic to parents as it is for the premies.  While she is growing in the NICU she can't be home with us right now. We can't feed her yet.  We can't peak over into her cradle to check on her whenever we want to see her right now.  So when we can hold her so close we can feel her on us, it becomes the best feeling in the world. They also give you a mirror to hold up, or rest on the arm rest of the chair so that you can see their faces while you are holding them.  My dad told me the other day that he read a study that showed the same center of a women's brain that is excited when she eats chocolate...or even the same part of the brain that gets stimulated after taking heroine is the same part of a women's brain that is stimulated when she smells a baby.  Right now, our best way to bond with Ellie is through touch...although making funny jokes are seeing her smiling in return even with her eyes closed is a close second.

 Not all parents do skin to skin therapy, which, our nurse informed us tonight, is completely ok.  Wesley prefers holding her when she is swaddled nice and tight.  Cute hat still optional, but again highly encouraged.

Today, Ellie's feedings increased steadily by 2mLs every 12 hours. Tonight she is up to 10mLs!  She has also been breathing really well.  She is on room air but they are still using the nasal cannula to ensure that it reaches her lungs.  They began titrating the volume of air down today, going from 3L to 2L.  They are expecting to move her down to 1L tomorrow with the hope that if she is still doing well being able to take off the nasal cannula on Monday.  Our little Ellie is doing so well!  We are so proud at how strong she is and how she continues to improve each day.  Tomorrow we will give you a peak at our bedtime routine!

Friday, June 20, 2014

Little Miss Ellie Marie

Last Saturday, June 14th, 2014 our sweet baby girl was born.  She was fashionably early - as I was only 31 weeks and 4 days along.  I had been admitted to the hospital 5 days before with preeclampsia. That Saturday afternoon, just 20 minutes after my preeclampsia had turned into ecclampsia, she came into the world by emergency c-section.  Preeclampsia runs in my family, but we were not expecting it to manifest so early or so quickly.  We were hoping for a few more weeks, even if I had to be on bed rest, for Ellie to grow more.  We are so thankful for all of the modern technology that exists to help her finish growing so that we can take her home!  For now, she will stay in the NICU until she is as developed as a full term baby.

Ironically, we had recently thought about bringing the blog back to document our last few weeks of pregnancy.  Now we are planning to use it to give updates on Ellie's progress.  We have been so overwhelmed with so much outreach of love and support for us and for Ellie.  Words can't begin to be sufficient to express how grateful we are for each and every well wish, prayer, and cheer for us to get better.

I am home now, after being in the hospital for over a week.  It took a few extra days after delivery to get my blood pressure back to more normal levels.  I will be followed closely by the OB/GYN over the next several weeks. {And of course Wesley and my mom, who have already bought a home blood pressure cuff and are documenting my levels on a Google spreadsheet.}

So far, Ellie is doing really well.  In just 6 days she made it from a ventilator...

... to CPAP ...

...and now finally down to a nasal cannula for respiratory support.

She also has been under a UV light for 48 hours (during which my mom so appropriately coined the phrase "NICU spa" as Ellie looked extremely relaxed as if she was just getting a sun tan.)

Like most preterm babies, she also had a patent ductus arteriosus (PDA), which they have been treating with indomethacin.  Basically, its an artery that babies need while developing in utero that closes on its own once they are born.  Ellie came so early, hers was still wide open.  Our nurse told us today that they are pretty confident it is closed now.  This also means she is starting to be fed every 3 hours.  Right now she has a line that carries it right down into her tummy.  She hasn't been eating for the past 3 days while she got the indomethacin, but now that it is finished she can eat!!  I have been pumping so it finally feels like all of my efforts are now supporting her too.

Today has been our favorite day as were were FINALLY able to hold her!  We have been waiting for them to get a PICC line in, which is a more stable type of IV line.  It took them trying for several days and last night they finally got one in.

It is so hard to describe how amazing it felt to hold her in our arms.  I didn't want to put her down.  We have to keep telling ourselves it will only be a few more weeks.  It is so hard to be patient.  We do count our blessings everyday that even though this past week was not ideal, and let's face it - enough drama to last us a year - we got through it and we are doing well.  

We will try and be consistent in posting updates.  We love you all so much!!

The Honeycutts
Wesley, Kristen, & Ellie

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