Almost Home

 Ellie has had a great week so far.  She passed her hearing test with flying colors, got her Hepatitis B vaccine (and stopped crying immediately after it was over), and tonight has taken her car seat test.  The doctors have been very pleased that she has not had any more desats, as have we, and they told us today that we are maybe, possibly, HOPEFULLY, going home on Saturday!

They increased the calories in her milk today in hopes that she can take less bottles and nurse more since she nurses so well.  Sadly, we cannot do that all of the time right now because she needs the extra calories to grow.  We may have to stay here a few days longer if they need more time to adjust her feedings so that she can go home with the right plan to help her continue to gain weight. Tonight she is 5lbs 7oz.

Ellie's stay here in the NICU has been exactly what they told us it would be: a roller coaster ride. We, and Ellie, have had good days and bad days, ups and downs.  When I was younger, I used to wish that I had lived at a different time.  A time perhaps when castles were inhabited instead of popular tourist destinations, or when you found a Jane Austen novel in the New Features section of a book shop instead of the Classics.  Of course that changed drastically when I went without air conditioning in my dorm room freshman year at Carolina.  And now, more than ever, I can't imagine living in any other time than this - when the great medical technology exists that gave Ellie's scary and traumatic birth story a very happy ending.  We have come such a long way in these past 7 weeks. Heaven's hand has been with us the whole time.  Through the blessings of my parents coaching, nurturing, and supporting us through this challenging time. Ellie's sweet and fantastic nurses loving, caring, and cheering her on. Wonderful meals provided to us. Being able to heal physically, mentally, spiritually, and emotionally.  Wesley and I felt bereft of a more "normal" birth experience, but we have mourned it, accepted what happened, and are now simply grateful of the outcome.  We just can't wait to get home and have our happy ending become our happy beginning.  

No More O's

I have been hesitant/dreading/trying not to jinx us, by putting off writing this post.  Having Ellie off of oxygen support is what we have been pouring all of our wishes, prayers, and hopes into because we know that when she is it is the final home stretch of her NICU stay.  I know I say it all of the time but we are truly, completely, really, REALLY ready to take her home.

Now, we need a drumroll.....because Ellie is off of her oxygen support!  And it looks like we won't be going back. The majority of premies that get to room air with no oxygen support and can sustain it for 48 hours rarely have to be put back on.  As of right now, Ellie has been off for 72.  We have been told to start thinking of this week as the week that we start preparing to bring her home.  Today, Ellie got her first Hepatitis B vaccine.  We have brought up her car seat and it is ready and waiting for Ellie's car seat test that she will have some time this week.  To pass, she will have to sit in it for 90 minutes hooked up to her monitors and have no drops in her heart rate or oxygen levels.

The last and greatest test she has to pass is having no drops in her oxygen levels for 5 days straight.  Statistically speaking, if premies can go 5 days without a drop in their oxygen levels, then their oxygen levels are not going to drop anymore.  We did have an episode last night while I was holding her and this morning while the nurse was feeding her at 7:30.  While the doctor's rounded we heard them say: "It make take her a little bit of time to adjust since she just came off her O's, but she is coming along and headed in the right direction."

Grow Ellie grow!

Together

And the weigh in today is: 5lbs 1.8oz!  

On Wednesday, Ellie was continuing to have terrible reflux - she was gagging, spitting up, and it was so bad it seemed with each feeding she would end up getting milk up her nose.  I was emotionally exhausted and frustrated.  So Wesley came over from work and worked from the hospital the rest of the day.  Even though Ellie has a great medical team, it just felt more comforting and "right" for the three of us to be together when she wasn't doing as well.  

She is doing much better now.  We are having to continue to help her pace herself when she takes bottles, and stop frequently and burp her.  For a while she was burping herself (I don't know how else to explain it) but now she needs more reminders and help.  We haven't had a spit up episode since Wednesday. We have switched back to feeding her every 3 hours and that seems to be helping too.  And, we are doing another trial off of her cannula to see how well she does.   It started yesterday afternoon around 3:30 so we will see how long she goes this time!

Ellie's Room

Our big girl has made it to 5lbs! And, she was off oxygen for about 21 hours.  She took herself off of it yesterday afternoon around 1. Yes, you read that correctly, she took herself off of it.  I came back from lunch and she had tugged enough that the tape came off her cheeks and the cannula was laying on the bed next to her.  She was napping happily and her oxygen level was great! So we left her off of it and she tolerated it really well.  During the night, they ended up having to put her back on it just while they fed her and this morning when I came in around 9 she was starting to dip down into the 80s. So they had to put her back on 0.5L.  They also said that she was refluxing bad last night and this morning for her feedings and wasn't eating as much, so we are all going to watch her take a bottles today and see how she does.  Baby steps! 

My mom was teasing me back in May that I had finished Ellie's room 10 weeks early.  Now, we are so glad that I did. I haven't had to worry about getting it done before she comes home.  I can't wait to see her in it. As luck would have it, it fits her personality perfectly.  I wanted a nursery that was soothing and neutral, but still "girly." But without feeling like "whoa, pink explosion!" every time we opened the door.  Being the art nerd that I am, I came across Edgar Degas' Dancers in Blue and then fell in love with grey and aqua bedding at Pottery Barn and the room quickly designed itself from there.  Wesley built and installed her shelves.  I love that we will be able to see the covers of the books that we put in there.

Mom, Katie, and I toted the Degas print to JoAnns and picked out coordinating fabric for the mobile that I made her. It took a long time, but it was really easy.  It is just fabric circles folded and pinned into Styrofoam balls. I turned the solid wood entertainment cabinet that my parents gave me a few years ago into a wardrobe to house nursing supplies, blankets, and diapers. I decided to keep the twin bed in the room with original plans to have Ellie sleep in her room from the beginning.   Now, she will probably end up in our room for the first few weeks so we can literally roll over and check and make sure she is breathing.   Still, I'll be able to use the bed to nap when she does and it will make a great "couch" for the three of us to sit on and read bedtime stories.

The finishing touches, from Ellie's sweet gifts to framed cards and shower invitations, made the room feel really ready for her.  It added the perfect amount of pink and personal touches.  We couldn't be happier with how it turned out and we just can't wait to bring her home to it!! I've told her all about it so I know she just dreams about being there every afternoon :)

Daddy Time

Last night, Ellie weiged 4lbs 15oz. She is now 18 5/8 inches long too! Our big girl is still on 0.5L of oxygen as she is still not quite ready to be without the cannula (although she still loves trying to rip it off from time to time.)  For the past two days, she has had more reflux which has been causing her heart rate go down and subsequently her oxygen levels while she eats.  There is a nerve that runs from her brain to her heart and passes by the vocal cords.  When she refluxes, that nerve is hit and it causes her heart rate to slow down.  We decided yesterday that since we were having to wake her up every three hours and she is now taking in 2oz each time, that they would let her sleep up to four between feedings. Between that and helping her pace herself while she eats, she had a much better day eating yesterday.  Now she isn't on a set eating schedule which means Wesley and I have to communicate more with the nurses by phone to find out how to best plan when to get there so that we don't miss her feedings.

Wesley has always felt a little sick to his stomach coming to the hospital to visit Ellie. Just because of everything that happened, and how she was born. Honestly the only reason I don't feel the same way is because I am a nurse.  This world isn't as foreign to me.  It also seems like everytime he is here she will she would desat or her heart rate will drop, or she will be kicking so much her blood pressure reading is high.  It is never at a time when the doctors would round too.  A few nights ago he finally pulled out Dr. Parson's number that he had given Wesley on the day Ellie was born with an admonition to call him day or night with any questions he had.  He needed to personally hear about Ellie's progress from one of her neonatologists as the time when the two of us had expected to bring her home had come and gone.  He answered the phone right away and talked to Wesley for a long time. He answered questions, resolved our doubts, and assured Wesley that he wasn't a worrier....just a good and concerned father.  I don't know why but sometimes it just takes reassurance from an "expert" to calm your nerves and quite your fears.  

"Daddy's book" for Ellie that he reads to her and no one else does has been Harry Potter. He has done such a great job of swallowing that sick feeling and be active in helping with her at the hospital. It melts my heart to see them together and I have a feeling it will become hard to separate them once she is home!

Bath Time and Cuddles

Ellie is now down to 0.5L of oxygen!  She is off of high flow and back on low flow and so far, she did really well today.  We are hoping that she is still on it when we go back tonight.  She is such a little champ :) 

Last night our nurse told us that it would be a good idea for us to give her several baths before she is discharged (I LOVE hearing that word!) and she can start having her baths when it is good for our schedule.  We have built our visits around maximizing our time when she eats so that she can nurse and we can get comfortable giving her bottles.  Until she has gained enough weight, she will be getting mostly bottles when we go home like she gets now in the hospital.  The bottles still contain breast milk, but are fortified with a teaspoon of high calorie formula and protein to help her gain the weight she needs. 

Today, we gave her a bath before her 2PM feeding.  It was Wesley's first time helping with a bath.  It was so funny how it took the two of us to bathe her.  I held while her while he gently scrubbed.  Contrary to the face she has in the picture above, she really enjoyed it.  She must find the warm water relaxing.  She was very calm in the water and didn't cry or get upset at all.  She also really liked it when Wesley poured water over her head to wash and rinse her hair.  She was so relaxed when she got out that she was too tired to nurse and had to take a bottle instead.  

All clean and cozy!!

We've really loved having my parents here this weekend!  Dad and Wesley got that 42 feet of fence moved in just 2 half days.  We couldn't be more thankful for their sacrifice of time and energy to make sure all three of us are doing well and getting through this time while Ellie is in the hospital!!

They are hoping that once Ellie is off of oxygen it won't be too much longer until we get to take her home!

Grow Ellie grow!! 

Still Growing

Ellie is still growing.  She is up to 4lbs 14oz.  I can't believe she is almost 5lbs!?!  She is starting to fit in newborn outfits.  Her feeds are going really well.  So well they have taken her NG tube out.  Ok, it may have fallen out during a night shift this week, but she was eating so good they just decided not to put it back in.  Today the doctor said that she can start eating ad lib - which means she can eat as much as she wants when she wants.  Within reason of course.  They have been feeding her every 3 hours, but now she is allowed to go anywhere between 2.5 and 3.5 hours between feedings.  I am hoping that they will soon let her go 4 hours between them at nights.  Maybe.  Fingers crossed.  Wow it would be great if she could sleep 4 hours stretches at night by the time she comes home.  

She is still on oxygen.  I would be lying if I said I wasn't frustrated and completely ok with this.  The doctor told us yesterday that they were expecting her to be off of oxygen by Saturday.  I may or may not have had to catch my self from rolling my eyes and didn't catch myself before letting out a sarcastic laugh. I knew in my gut that Ellie wasn't ready for that plan.  As well as she has been doing, she is taking her time.  When she gets really feisty, she will pull out her cannula and even sometimes try to eat it (obviously because they are so delicious).  When she does this, her oxygen level goes down, proof that she is not ready to be without it yet. However, with talking with the doctor today, she told us that they have to try and wean her down and how she responds tells them if they are going too fast for her or not.  In the last 4 days she has gone from 3L to 1.5L which is really really good.  They just went down to 1.5 yesterday, which is why I thought their timeline was too fast.  Sure enough, they tried to go down to 1L last night and Ellie politely told them: "Nope, I'm not ready for that yet.  Please turn it back up to 1.5." And they did.  They are going to try turning it down again tomorrow.  

Since Ellie remains on oxygen at 36 weeks, she has been diagnosed with chronic lung disease.  It isn't as scary as it sounds. They are confident right now that she will not have to go home on oxygen. For the first few years of her life while her lungs continue to develop we will have to be very, VERY careful of germs.  If she gets a cold, or gets sick, it will be a lot harder on her and take her longer to recover than babies who don't have chronic lung disease.  Hand washing will be key for anyone that is around her or wants to hold her.  I'm sure I will have more hand sanitizer in her diaper bag than diapers.  In the grand scheme of things, it is such a small price to pay to have her with us.  It won't be forever, just for the first few years while her lungs still develop.  

Parenting lesson #57 that Wesley and I have learned is that you cannot push your child to develop faster than they will.  Patience is hard, but key, as our baby needs to grow at her own pace.  We love her so much and just want her to get to the point where she is ready and can safely come home.  I seem to read these scriptures everyday: 

"If thou art called to pass through tribulation... if thou art in perils by land or by sea; And if thou shouldst be cast into the pit, or into the hands of murderers, and the sentence of death passed upon thee; if thou be cast into the deep; if the billowing surge conspire against thee; if fierce winds become thine enemy; if the heavens gather blackness, and all the elements combine to hedge up the way; and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee experience, and shall be for thy good.  The Son of Man hath descended below them all. Art thou greater than he? Therefore, hold on thy way... For God shall be with you forever and ever."

Some days it does feel like a black cloud is over our heads.... I get stung by a bee in the face on the way into the hospital...we find out that when we built our fence 2 years ago we used the wrong pins to measure the placement and we now legally have to move 42 feet of fence by the end of the month before the new owners close on the house next door... But at the end of the day we know we are lucky and that we have not been forsaken. We are so blessed with the best family and friends supporting us. I made it.  Ellie made it.  And sooner than we know it we will be taking her home - happy and healthy :)

One Month

Our sweet Ellie is one month old today!  

On June 14th she weighed 3lbs 5oz and was 16 1/2 inches long.  On July 14th she weighs 4lbs 11oz and is 17 3/4 inches long.  She is starting to take most of her feedings by mouth, and she still loves to kick and stretch.  We can't believe it has already been a month - it has flown by (thank goodness!) but also feels like it has been a lot longer than a month.  We are so in love with our sweet little girl that has changed our loves forever.

Keep growing Miss Ellie - we are so ready to take you home!  

Feed Me!

Remember how I reported in the last post that they would wait until Ellie was back on low flow oxygen to start oral feedings?  And then remember how I also said that the NICU plans change multiple times during the day?  Yes, that's right - the plans changed again and we got to feed Ellie today!  She is also up to 4lbs 11oz.  What a growth spurt!

As we were walking out the door to head to the hospital this morning our nurse called to tell us that we would be able to start oral feedings today and wanted to see if we could get there by her next feeding.  We are so happy and excited because we thought it would be a while before we got to do this.  She breastfed for the first feeding and then they ran a little bit through her NG tube (about 15mL) to make sure that she got enough.  They weighed her before and after the feeding to see how much she took in.  She improved from 2201 grams to 2239 grams which means she took in about 38mLs - almost all of her feeding amount.  She doesn't like being burped and just like her, her burps are very small :)  The next feeding she breastfed like a champ and we didn't need to follow that feeding with any tube feeds.  They gave her a break at her 5PM feeding by getting her dinner through the NG tube because she exerts so much more energy with oral feeds and they didn't want her to over do it on the first day.

Wesley and I got there a little early for our night time visit so that we could try her with the bottle at 8PM.  She downed the entire bottle in less than 10 minutes, gave us two good burps once she was done and then fell right asleep in an adorable milk coma.  Call me crazy but I think she has this eating thing down!!

No new updates on her lungs for now.  She did well today on the high flow cannula and they are planning a repeat x-ray tomorrow.  They want to get good films when she is doing well to compare to her earlier films to try and get a better picture of what is going on.

Grow Ellie grow!

The last few days

We've been busy over the last few days.  Ellie is now up to 4lbs 7oz.  They are really happy with her growth and nutrition, and so are we!

I got to give her a bath this week.  She is still so small a small bucket was the perfect size for a bath tub.  Our favorite nurse was there that day and she made it even more fun by sticking an oxygen tube in the water that turned Ellie's bath into a whirlpool tub!

Life in the NICU seems ever changing.  How she is doing, or what their plan is, seems to change so much within each day.  We've gone back and forth a lot on what to do about her persistent need for oxygen. Thursday while on the trial of the low flow oxygen, she was severely retracting while she was breathing (she was working really hard to breathe). They are still trying to figure out why.  Most babies born around 30 weeks are progressing more quickly at being weaned off their oxygen by now.  I had a long talk with one of the doctors today and they truly are doing everything they can. They are double checking all of her x-rays and we have put her back on high flow oxygen for now. She is already breathing much easier. The higher flow does a pretty good job of stenting open the micro-atelectasis in her lungs (which means the smaller branches of her airways are collapsing due to inflammation that is present). We've ruled out infection or underlying cardiac issues.  That means right now her lungs are still immature.  There are not any pediatric pulmonologists at Rex however it isn't time for a formal consult from one yet. If she doesn't make progress in the next few weeks we will need one.

On the bright side, she is excelling everywhere else.  They repeated her echo that showed her PDA is nicely closed and her heart looks perfect.  She is tolerating her feeds very well and is gaining weight nicely.  She is now up to almost 40mL of milk every three hours!  She is staying awake for longer periods of time (and 100% adorable while awake and asleep).  She even stays awake during her feeds if you are holding her and sucks away at her passy.  As soon as she can get back to low flow oxygen we will be able to start oral feedings.  I can tell she is so ready for it!

Voodoo Magic

{These are a few of my favorite sleepy snapshots from the past couple of days}

We had another very eventful day today.  Ellie is now 4lbs 6oz - she is getting some serious chunk for a premie and we love it!  Volunteer Services dropped by and gave us two great gifts.  Well, one was great and one was....creepy :/  The great gift was a book on premies - we are talking textbook capacity that has already been a great reference for her stay now and will service as a great reference for us once she is home.  The creepy gift was extremely well intended - it was called a "snoogle" and you were supposed to wear it so get your scent on it and it was to remain with her while you were away.  Really great idea.  Except it looked like a baby, pastel dementor (an evil creature from Harry Potter that sucks happiness and even your soul out of you). Needless to say, since it reminded us of that we couldn't bear the thought of leaving it with our sweet baby.  And she is such great friends with Babette (her bunny in the second pictured above) we just wear her while we are there so she will smell like us when she snuggles with Ellie when we leave.  

We also had a very successful time with the lactation consultant today.  Ellie is getting really good - I can't wait for her to be able to finally be able to feed orally!  We are still waiting on getting her lungs mature enough to do it.  I wish I had a time table to share, but we still don't know when that will be.

She seems to be stumping the respiratory therapists.  After being on high flow oxygen for a week without much improvement they decided to put her on a low flow oxygen cannula.  We think she has been hating and fighting the high flow cannula.  They are going to try her on low flow to see if she will do well with a more gentler flow.  As I found out this afternoon when her cannula fell out of her nose, her oxygen saturation is perfect on room air when she is calm, asleep, and on her belly.  She held out perfectly for 30 minutes.  I called in the nurse and respiratory therapist to see it.  When she wakes, squirms, or gets uncomfortable she holds her breath and then her oxygen saturation drops to the low 80s.  We put her back on the low flow oxygen and she went right back up to 100.  She started squirming again in her crib right before I left late this afternoon and her oxygen level went back down.  I picked her up and held her on her belly on my chest and she went right back up to 100.  I looked at the respiratory therapist and asked why it was happening.  His response: "I have no idea.  This is some kind of voodoo magic.  I am stumped because I don't know any science to explain this."  Great - just what I wanted to hear. We ended up putting her on her belly in her crib.  Her sats stayed up, she didn't squirm, and quickly fell asleep.  

Her chest x-ray this week showed good improvement in her lungs from last week.  They are going to keep watching her and her patterns closely to see what they can find.  With the pace she has been going, we have pretty much accepted now that she will more than likely be in the NICU until her due date (mid August).  The good news is that we seem to be progressing again. At our visit with her tonight her oxygen level was really good and she was still on the low flow cannula.  For the last week we felt stuck in the mud!  It feels good to feel like we are moving forward again.