6 weeks in and counting!

I can't hardly believe that it was 6 weeks ago yesterday that James David Johnson made his big appearance!  Truth be told there are some days I can't believe I have a son at all.  Until he comes home the reality of his birth somehow feels surreal.  Like a very vivid dream.  And then I look down and I see my c-section scar and I remember.  That may seem rather odd to some people.  Maybe even outrageous.  

My mother-in-law joked with us one night as she and Robert watched Ellie that they don't think JD is really real, Matt and I are actually just going out each night taking advantage of free baby sitting!  I totally understood what she was saying and agreed.  Because he's always been at Baptist Health we haven't gotten to celebrate and share our little boy with others as we long to do.  However, as Matt always says, we're closer than we've ever been before to bringing him home!  Soon, it'll all be over and he'll be home...right where he belongs, with his daddy, momma and big sister :)

With all that in mind, here's an update on our little man.  About 2 weeks ago James developed an urinary tract infection, which is unusual in boys.  Our doctor said that it was just a random thing that happened.  To be safe they did do several tests including a renal ultrasound just to be sure that everything was working properly.  Thankfully, everything was perfect and it truly was just a random chance happening.

While the infection was not severe or life-endangering it did set us back just a little bit.  Keep in mind though, this is the first thing that has gone "wrong".  We have been so blessed!  The infection required a few rounds of antibiotics through an IV.  Naturally all of this wore our little man out so we had to backtrack a bit on his feedings and apnea episodes.  Just for about a week.  

Thankfully, the infection is completely taken care of now and he has made great progress!  He now eats wonderfully, taking between 45-60 mls at each feeding!  We are going to begin to try nursing tonight vs. taking the breastmilk from a bottle.  It will be a transition for him and while I hope that it goes well and we'll be able to move in that direction I also understand that he may not make the transition smoothly and we may have to bottle feed.  Either way he's getting the wonderful nutrition he needs so you won't hear me complain!

His apnea episodes have slowed down but are still occurring.  As you may remember he has met 2 of his 3 milestones required to go home.  The one milestone he's missing is going 5 consecutive days without any apnea episodes.  Thus far he's not gone longer than a day and a half.  Again, this is just a developmental thing and one we want completely figured out before he comes home so we are not upset at all that he has to stay a bit longer.  On the other side, because this is the last milestone there is always a chance he'll be coming home in 5 days.  Everyday could be day 1 of the 5, so you just never know!

That probably answers your biggest question, when is he coming home?!  Unfortunately, there's just no way to really know.  It could be 5 days from now it could be 2 weeks from now or it could be closer to his due date, August 17th!  In the meantime we just keep pushing forward, enjoying the time that we have each day with him.  He did cross the 5lb. mark this past Friday so he's really starting to look like a term baby.  He's making fun faces and "talking" to us...it's so fun to watch him grow!

Here are a few pictures to close...

Snuggling with momma...

Big eyes!

Conked out after eating!

Taking our bottle with serious eyes...

Daddy, the professional feeder!

Perspective and a James David Johnson update!

One of the most frequent questions I get asked is, "How are you doing?".  Usually followed by a statement similar to, "I can't imagine how hard this must be.".  And you know what?  They're right.  It is incredibly hard.  I can't think of one thing about this entire period of my life that has been "easy".  

• It's hard to be disciplined enough to go pump every 3 hours during the day instead of nursing a baby in my arms.  It's even harder to get up and pump every 4 hours at night :)  
• It's hard to leave Ellie every night knowing how well she does in a routine but how much she can struggle when she doesn't get it.  It's hard choosing to make her struggle.  
• It's hard to know at various points throughout the day James David is crying and there's no momma to comfort him.  
• It's hard driving to Paducah every night when you're emotionally and physically tired...longing for the good 'ole days when you stayed home every night.  
• It's hard seeing JD hooked up to tubes and wires, knowing he belongs home with me but having to wait.  

It's all hard.  That's just the reality of the situation.  If I wanted to, I think I could make a decent case for wallowing in self pity.  I mean our circumstances are pretty sucky.  But then I'm reminded of some things.  I'm reminded that:

• I have the distinct privilege of providing my son with food, nutrients and important antibodies.  Not all moms get to successfully pump and provide for their child this way.  I am so fortunate that I get to!

• We are so blessed to have grandparents who Ellie adores that will give up literally every night of the week to come and watch her and put her to bed so that she can stay in her routine.  Not everyone has family members willing to make those sacrifices.

• JD is adored by the nursing staff at Baptist Health!  Trust me when I say, he is not lacking for anything in their care!  While I long to be there and be "momma" it is a huge comfort knowing the kind of love, attention and affection he is receiving right now.  It gives me peace of mind knowing they are watching over him.

• Driving to Paducah every night has given Matt and I the unique opportunity to communicate and share about this experience with each other in a way that we probably wouldn't be able to otherwise.  It gives us time to connect and lean on each other, unpack our days and emotions.  I bet there are a lot of parents out there with two kids who would give a right arm for 2 hours of guaranteed alone time with their spouse!

• My son is healthy and happy.  What more can I ask for?  I haven't lost him to cancer or another illness.  I didn't have to struggle through a miscarriage or a stillbirth.  He isn't going to have to live with a disease for the rest of his life.  Sure, we have to be patient as he grows but he is healthy.  I am so blessed!

Perspective changes everything.  I can choose to focus on all the hard stuff.  Because it is hard.  But focusing on it doesn't make it any less hard.  Or I can choose to focus on being grateful for all the good things.  And that does make it less hard.

Passed out after daddy fed us for the first time!

 JAMES UPDATE:

It's hard to believe but our boy is one month old today!  My goodness time has flown by ever since I was put on bedrest 6 weeks ago.  JD just keeps on growing and getting bigger.  As of yesterday he was already up to a little over 4 lbs.!!  Big boy :)  He has been out of the incubator for awhile now and is maintaining his body temperature wonderfully.  If you remember that is one of the three milestones he has to achieve.

He has moved from receiving my milk via feeding tube to bottle feedings most of the time.  He actually got his feeding tube out for several days but they did have to put it back in recently which is normal.  He still takes most feedings through a bottle now though.  They have been fortifying my milk (mixing it with a high calorie formula to help him gain weight) and that is something that will continue even once he's home for awhile.  They are trying dropping him from a 24 calorie milk to a 22 calorie milk though (breastmilk has 20 calories).  We still have several steps before this milestone (able to feed himself) is reached but progress is definitely being made!!

The final milestone is breathing on his own with no apnea episodes for 5 consecutive days.  Previously he has been on caffeine, which is how they combat the apnea episodes, however they took him completely off of caffeine about a week ago.  He still has a few small apnea episodes a day which again, is very normal for a baby his age.  Some babies take till their due date (ours was August 17) to resolve these episodes and others are able to do it sooner.  Thankfully they will not send him home until they are gone, which makes me feel SO much better!!

Siblings under the age of 2 aren't allowed in the NICU so Ellie has yet to meet her baby brother.  However, she did get to see him from a distance last Sunday!!  We've been making videos of us holding him and showing them to her so when she saw him (from about 10-12 feet away) she said, "Baby!"!  LOL!  We considered that a win :)  Ellie has been my sanity through this all.  Anytime I miss baby James I just hug her!  Thankfully she's a cuddler and doesn't mind!  This experience has definitely completely changed my perspective on my beautiful little girl.  Not being able to hold her and pick her up and put her down for a nap or bedtime for 4 weeks (2 weeks of bedrest and 2 weeks post surgery) has made our time together extra sweet.  

It's easy to focus on the child who is in the NICU when I blog but the reality is that Ellie needs me a lot more than James right now.  And I'm forever grateful to Dr. Savells for pointing out that truth to me early on in my pregnancy when we learned JD would probably be early.  It won't be long till James David is home so I want to cherish these last few weeks of just Ellie and me while I can.  She is the delight of my heart...so I have to include an Ellie pic (and trust me, her and JD look a LOT alike!)!

Big sister!

People often ask what's next.  Great question!  Once James David gets all 3 of his milestones reached they will have Matt and I come stay at the hospital with him for 1-2 nights.  They call this "rooming in" and basically we'll have a "normal" newborn experience.  He'll stay with us in the room like if I'd just had him.  Then we'll come home!  HOORAY!  We've still got quite a bit of time before this happens (remember they shoot for baby to come home around their original due date which isn't until August 17th).

Look how big I'm getting! 7/14/13

THANK YOU!!

Matt and I cannot begin to say thank you enough to all the people who have helped us and been praying for us and our little family.  We've always known we were blessed with an awesome support system but you all have humbled us with your love and generosity.  We love all of you!!

This is the closest we currently have to a family picture of all 4 of us!

Welcome James David Johnson!

Dear friends,

Let me begin by saying that if you thought I posted long blogs before...GET READY!  LOL!  This one will most certainly be a record breaker but so much has happened and I can't bear to not share some of the amazing things.  To keep it simple for those of you who are skimmers I'm trying to utilize headings so you can just jump to the section you want and ignore some of my other ramblings :)

Getting Things Rolling...Friday, June 14th

On Friday, June 14th we went to our usual doctor's appointment for James David.  We were excited when we got done with the ultrasound because his fluid was holding steady, he was growing and everything looked good.  Maybe we would make it to 36 weeks after all!  Post ultrasound we went to the examination room to wait on our doctor.  For a few days I'd been experiencing a new sensation that I could really only describe as feeling like James was kicking me in the crotch.  Not a very lady like description but it really felt like it!  Just before our doctor arrived I told Matt that and we chuckled at our future soccer player of a son.  

When Dr. Savell's checked me she said, "Oh!" with a surprised look on her face and we knew she must have found something unusual because she does not surprise easily.  Turns out I was 2 cm dilated and JD's foot was sticking out!  So I really was getting kicked in the crotch!!  We knew then that I wouldn't get to leave the hospital pregnant again.  She admitted me to see if we couldn't take measures to stop labor from progressing for as long as possible.  I couldn't feel them yet but I was having contractions and that was a priority.  They gave me the first of 2 steroid shots to help develop his lungs and we waited to see what was next.

Saturday morning, really early they decided to begin magnesium.  Magnesium functions as a muscle relaxer so it can stop labor but more importantly it protects the center of his brain and helps it to develop.  They warned me though that Magnesium isn't a fun medication to be on.  It generally produces flu like symptoms.  I had the most amazing nurses working with me and they did everything possible to make sure I understood what was happening.  I would be on the Magnesium for 48 hours.  During that time I would have to be watched carefully to make sure there were no dangerous side effects one of which was fluid developing on my lungs.  To make sure I had a good output of fluids they also put in a catheter.  

Misery Loves Company...

Well...the Magnesium worked in that I stopped having contractions.  But that Saturday (June 15th) was one of the worst ones I can recall.  The Magnesium made me incredibly hot...poor Matt was freezing in the corner with a blanket and I was burning up!  Remember too, James' foot was sticking out right by that catheter and he loved to kick it, agitating it in the process!  By Saturday afternoon I was at my tolerable end.  I was a sobbing mess and I am so grateful that Matt was there to soothe me and work with the nurses to get a solution.  They, thankfully, agreed to take the catheter out which was my primary source of pain.  Again, the nurses kindness and gentleness with me was something to behold.  I will never forget how wonderful they were to me during that time of stress.

Sunday was also Father's Day and not what I had planned for Matt but he was wonderful.  Friends stopped by to visit bringing me special treats to help distract me.  I'll never forget when one of my dear friends from Benton stopped in I started crying as soon as I saw her.  Knowing she and her family took the time on Father's Day to come see me meant the world.  

Because the next day I would be taken off the Magnesium we understood there was a chance that my contractions would pick back up and a baby would come.  For that reason we arranged for Ellie to stay with my family in Harrisburg for several days.  They came up to Paducah and spent some time sympathizing with my discomfort before taking a very happy Ellie with them.  It was a great comfort to me to know that she would be spoiled rotten at mawmaw and pawpaw's the next few days.  It also allowed Matt to just focus on taking care of me and JD.  So we waited for Monday.

It's time!

Early Monday morning, June 17th they took me off the Magnesium and boy was I grateful!  It was worth it to ensure that JD got the steroids he needed for his lungs and his brain but that was a very tough two days.  We hoped that contractions would stay away and James would stay put but we truly didn't know what would happen.  About 11:00 a.m. we noticed some slight contractions returning and by 2:00 that afternoon I had progressed to 3.5 cm dilated and we knew.  Our c-section was set for 4:30 that afternoon.

In that moment peace just filled both Matt and I.  Knowing it was time we were excited to meet this little boy who we already loved.  Matt looked pretty adorable in his OR gear...kinda like a thin teletubby but adorable none the less!  I was nervous about the surgery aspect of a c-section since I've never had any type of surgery or stitches.  Matt continually reassured me and the nurses spoiled me rotten knowing I was unsure.

Having had Ellie naturally I wasn't sure what to expect from this experience.  I've read where moms feel cheated out of a birthing experience and other negative side effects they've experienced.  The truth is though, I loved it.  I was completely present when my son was born whereas I don't even remember Ellie being born, I was in too much pain!  Every person in the OR went out of their way to make it a positive experience for me.  They talked to me and loved on me more that I could have ever expected.  I have nothing negative to say about any of it!  

James David Johnson officially made his debut at 4:55 p.m. on June 17th.  He weighed 3 lbs. 9 oz. and was 16 inches long.  He has a head full of dark hair and is perfect.  I got to see him quite a bit in the OR before they took him to the NICU where Matt got to see him more.  Perhaps the most bizarre thing considering the circumstances is how truly peaceful everything was.  It was so obvious to Matt and I that God was present with us and we just felt totally surrounded by His love and peace.  It was a beautiful moment.

Where we are now...

James will be in the NICU more than likely until August.  He was 31 weeks and 2 days when born but has not had any major complications outside of those naturally related to just being early.  In the past week he has had slow and steady progress which is exactly what we want!  There are 3 milestones he has to achieve in order to come home:

1.  Maintain his body temperature.  He is currently in an incubator and this is just one of those things that will develop as he gets older.

2.  Able to eat on his own (suck and swallow).  Most babies do not develop the ability to suck and swallow until they are about 34-35 weeks old.  For now he has a little feeding tube that delivers my milk to his belly.  He is doing amazing on his feedings though!  He's already up to 33 ml of milk every 3 hours and has tolerated his feedings wonderfully.  Being able to suck and swallow is just something that will develop as he gets older :)

3. He has to go 5 days with no apnea episodes.  Premature babies almost always need a little more time to develop the part of their brain that reminds them to breathe.  It's not a lung issue but rather a neurological one.  For now there are just occasions where he forgets so before he can come home he has to go 5 consecutive days without any episodes.  The hospital told us this is usually the one area that takes the longest because he may go 4 and half days but then have an episode and we start all over.

All of these are areas that just need time to develop so while he may be in the NICU until August it's not because he is in critical condition, he is simply young and needs time to mature.

So that's it!  We go every evening to see JD and hold him.  Leaving is truly difficult but knowing he is in the care of some outstanding nurses who adore him does make it easier.  I promise to try and keep everyone updated as we go each week, in the meantime thank you for all the love and support we have received.  We always knew we had amazing family and friends but you have all truly gone above and beyond to help.  Between meals, assistance watching Ellie, gifts, cards and much more you have helped make this the best possible situation given our circumstances.  We love you and can't wait to introduce you all to our little James David one day! 

Like father like son...