5 Week Update: A day late

So my little miracle is  now 5 weeks old! He's just growing so quickly--it's truly remarkable. He's approaching 2.5 pounds, making him one pound heavier than when he was born. And he looks so much chubbier. His arms and legs are filling out and his cheeks are looking more and more kissable each day. He's now 14 inches long and is growing into his long limbs. His PICC line was removed, so all of his medications are now given via his feeding tube.. He's  still on full feeds, but they've added calories to my breast milk to help him grow faster. The goal is to increase his growth and feeds more before they try to take him off the ventilator again. They've increased his caffeine dose to help with the brady spells he started having. Apparently, it was still dosed at a weight 790 grams. NO wonder he was having issues. The poor kid is well over 1000 now!  He's had a few issues this past week. His breathing tube has come out twice and therefore had to be replaced. The second time, my little guy ripped it out on his own, which is pretty remarkable since it is taped to his face. The most important change this week is that Jaden has been moved to an isolation unit. While he doesn't have an active infection at this time, his cultures have tested positive for MRSA. His body has walled off the colonization which shows that his immune system is working well. Because of this isolation, we are now required to wear gowns when we are next to his isolet. The nurses have to gown up and wear gloves no matter what they do for him. Fortunately, it will not affect my Kangaroo Care. As soon as my cold goes away, I can continue to hold him! What's more, is that I can start to bath him Tuesdays, Thursdays and Saturdays provided he's doing well! I'm so excited for this!

Love and Other Drugs

Holding your child for the first time is one of the greatest joys that a parent can have. Waiting until that child is more than three weeks old, only compounds that joy. It was simply the most peaceful and amazing moment of my life. I felt my worries and fears for his life and even his struggles become at ease even  if just for moment. And in that moment, I simply became lost--lost in his scent--lost in his breath upon my chest as his hand caressed it ever so softly. It was if I had met him for the first time and yet I had always known him. We were destined to meet--our lives would forever be entwined. I would forever love this person. 

As I sat in the waiting room one evening, hoping to be able to hold him again, I read an article about a newly released movie (hence the title of this specific post). While the movie has absolutely nothing to do with my experience, it's title rings true in a way. As I was finally allowed to see Jaden that evening, I was told that I would not be able to hold him. He had just been bathed and would need to stay incubated to keep his body temperature up. Instantly, I became disappointed and, quite honestly, mad.  How could this woman tell me that I could not hold my baby? Had she not heard me all day talking about it? Had she not seen the smile on my face in anticipation ? Did she not understand that I needed this? --Of course she knew how important this was for me, but her concern is for the care of my son. 

And that is when it occurred to me. Holding Jaden has become my drug. I constantly look forward to getting my next fix of him. As I hold him I am complete--I am, in a way, high. The moment he goes back into his isolet, I wonder when I will get to hold him again. I begin to "jones" for him the way a drug addict does for their next high. While there aren't any physical signs of withdrawal, there are emotional ones. I'm curious to know if the mothers of full term babies feel this same way, yet they just don't have the chance to realize it because they're constantly getting their "fix". 

Happy One Month Birthday!!!

Wow, has it really been a month? My precious baby has grown so much, especially over the past week. He weighs in at a hefty 2.4 pounds now. As of last night, Jaden had his TPN completely removed and is solely receiving breast milk! Hopefully he will tolerate this so that we don't have to go back on it. They finally removed his stitches and surgical tape from the heart surgery. It left his skin rather sore and red in spots. They're just applying a topical antibiotic to help it heal. His chest x-rays have been coming back clean. They'll continue to monitor them to look for any small sign that the collapsed lung is back. The way that he looks since his heart surgery is beyond better!!! I feel as though he is finally filling out--he looks less fragile everyday. Joe and I have been joking about how chubby he is or about how you can no longer see his neck due to his double chin. It's so adorable and more importantly, so normal. My experience as a mother has been anything but normal up to this point. And unless you've experienced the life of a NICU mother, words cannot describe it well enough. So this small piece of normalcy is greatly welcomed!

OUR FIRST HUG

The Green-Eyed Monster

Jealousy.

It is not something I can afford to have during this experience. Holding onto moments of envy will only make it harder to get through this journey. By nature, I am not a jealous woman. I'm not saying that I don't have passing moments of jealousy, because I absolutely do. I just refuse to let those moments dictate my life beyond that fleeting second. However, last night, that "fleeting second" took much longer to pass by.

I've yet to hold my baby in my arms. I see other women holding their children and I think, "wow, I can't wait until it's my turn." Until recently, Jaden has been the smallest baby in the NICU. The babies who were held by their mothers were older and weighed more than he did, so it didn't really bother me that they could be held. It seemed like a right of passage in a way. These mothers had put in their time, anxiously waiting for a time when they could place their child on their chest, feel his (they were all boys) breath on their skin, and gain some sense of control over the situation they were placed into. I looked up to these women, in the same way that a Freshman might revere a Senior in high school.

My adorable Jaden is getting closer to weighing two pounds everyday. His health is still shaky and, of course, he has his good and bad days like we all do, but overall he is trending in the right direction. There is now a baby who barely weighs over a pound--much smaller than Jaden was when he was born. She is only two days old--and yet, her mother will get to hold her today. TODAY. And while, I want every mother to lovingly hold her children, I cannot help but feel envious for longer than a fleeting second.

And eventually it does pass, and I am reminded that God has put Jaden and I on a different journey AND that when I am able to hold him in my arms every moment of jealous will be forgotten. How could I feel anything, but total bliss, when I am finally able to hold my precious child. 

Photos

3 Week Update: A backslide this week

Unfortunately, yesterday was another bad day for Jaden. The poor little guy was struggling to breathe and dropping his stats. After receiving another x-ray and checking his blood gas, they had to place another chest tube in his right side. His lung had collapsed again. When we arrived to the NICU, the procedure was already completed and he was resting comfortably. There are so many things wrong with this picture. However, when I left the hospital last night, Jaden was looking better and still resting comfortably. Of course, when I asked the Dr's why this happened I get the same generic response, "it just happens in babies this size" or "this is what they do at this age"--you get the point though I'm sure. I understand that these babies are unable to talk or really communicate, so it is harder to determine why things happen. I know that there are normal occurrences that follow a premie (or micro-premie) throughout life, and these can't always be explained, but I feel they should at least try. Just tell me that the ventilator puts too much pressure on his lung which can collapse it. (Keep in mind that this is just my theory and not what really happened.) Ok, moving on! So, they had stopped his feeds for most of yesterday. When they finally started them back up at 7 pm, they actually increased them. He's now getting one ml (cc) every 2 hours instead of one ml every 4. This is a great sign in a baby this small. He continues his bowel movements (woohoo!) and on X-ray, his bowels have improved dramatically. There may still be a small obstruction, but surgery is looking less eminent at this point. His weight is continually fluctuating. At his highest, Jaden weighed in at 840 grams (about one pound 13.6 oz). After his surgery, he had dropped down to 710 (one pound 8.9 oz). As of two nights ago, he was 800 grams (one pound 12.6 oz). He is barely over 13 inches long. And as with all of his measurements, please take in mind, that each time it's a different nurse. They all have to keep him off the scale while letting his equipment, tubes, lines, and bedding rest as they zero it out. Each one has their own way of doing this and depending on how it's done there can be huge fluctuations. I say this to you because last week he weighed 840 one day and 690 (his birth weight) the next. The doctors completely dismissed this weight and used the 840 to calculate his meds for the day. Jaden looked like an 840 gram baby and has "bulked up" so much since his birth. He's had to receive more transfusions this week. I imagine we will see lots of these in our future. I generally run anemic and my baby seems to be following in my foot steps. However, they're constantly taking his blood for labs and his breathing tube is still showing blood upon suction, so he'll keep being anemic and keep needing transfusions for a while. In breast feeding news, I am a rock star! The hospital actually asked me to stop bringing it in and to freeze it at home b/c they're running out of room in the freezer. I've already filled 7 bins! His daddy bought him a new blanket to dress up his isolet. It's incredibly soft, pale blue with an elephant on it and says "daddy loves me". It's simply adorable! Joe's initial extension was approved. We're now waiting to see if he can remain in the states for the rest of this deployment.

Firsts

Tonight was filled with a lot of "firsts" in our young man's life. It was the first time we took a family picture with the three of us. It is simply the most precious picture. I cannot wait to share it with all of you and I'm excited to have one with all four of us! It was also the first time that Jaden sucked his thumb. I saw his hand inching closer and closer to his mouth and I knew that it would only be a matter of time. It is uncoordinated and awkward, as he's not quite in control of his motions at this time and yet it is one of the cutest thing I have ever seen. And the two most important firsts are my absolute favorites: the first time he wrapped his hand around his father's finger, followed by the first time he really smiled. Jaden's precious little hand is so tiny against Joe's, yet they look as though they were designed to match perfectly; like a lock and key--the most wonderful lock and key that is! I cannot describe the sheer joy I felt at this moment. It was if for one moment all of the stress and tears of the past 3 weeks were erased--that God was smiling down on us as a family!! <3 <3 I am truly blessed!

Update: Week 2

Yesterday, my little one had heart surgery. The duct didn't close with the second round of medication they gave him, so they decided that surgery would be best. Now, I say this calmly, but it was quite a surprise to us--not that he needed surgery (they'd been talking about it for days), but that it would happen so quickly. When we came in yesterday morning, the plan was to allow him to rest. When I returned from my 11 am pumping session, I was flooded with the faces of new medical team members explaining that they had an opening and they're going to do his surgery in a few hours. Jaden did well during the surgery. He has no complications, that can be seen at this point. He spent the rest of the evening still under the effects of the sedatives, unaware that mom and dad were even nearby. Jaden also had a big day aside from his surgery. They finally removed his bilirubin lights and therefore his cool shades! He actually opened his eyes for the nurse and the left eye for mom and dad. Hopefully, when he's more alert we'll get to see just how beautiful those little eyes are! Today, Jaden turns two weeks old! Oh, how my baby is growing. At birth, he weighed 690 grams and he is now a "strapping" 840 grams (nearly one pound 12 ounces). Each day we're getting closer and closer to that two pound mark. He even looks bigger at this point. His skin isn't as translucent, his limbs are thicker, his head more round. I still can't wait to hold him, only now I'm less afraid that I'll hurt him!

Scent

There are times when I sit down to write this blog and I simply have no words to type; a thousands thoughts, yes, but nothing that will form into "note-worthy" material. And then I wonder, why at a time like this, does it even have to be note-worthy at all. This is in fact, my blog--the words expressed here can be whatever I choose for them to be. And so today I would like to talk about the smell of the NICU. I know, it sounds odd, but if you're going to understand this experience, you need to know about the minor details as well. Imagine staring at a plastic incubator at the tiny miracle you have created. You see this precious, tiny baby, naked except for the diaper he is wearing. You lean in to be as close to your child as possible. The scent hits you. It is that sterile, hospital smell, that is pushing through dry air. When you're not there, next to your child, you can close your eyes and still smell it. It doesn't smell like baby lotion or Dreft laundered clothing. It doesn't smell like baby at all. And you become excited to finally have your baby smell like a baby should--and yet slightly sad that he doesn't already.

The calm AFTER the (mini) storm

This morning, they decided to extubate Jaden again; not to put him back on a CPAP, but because his breathing just wasn't quite right. Upon pulling the tube out, they discovered a lot of blood collecting at the end of the tube, narrowing it even further.  When they finally got the tube back in he was having quite a hard time breathing. His blood pressure dropped constantly throughout the day as well. They increased his ventilator settings so that it is doing most of the work for him, allowing him to finally relax calmly in his bed. A duct in his heart is still not closed. They're giving another dose of indocin to try to close it again. If this doesn't work this time, then surgery will likely be the next step. I am, by no means, prepared for that step. I just cannot imagine them cutting open my tiny, baby boy. But I will continue to pray about it and trust in God. He'll have another Echo on Monday to see if the medication has worked...so fingers crossed!   Zachary met his little brother for the first time today (insert momma tears here). I was fortunate to get a great picture of the three of them and a separate picture of Zach holding onto Jaden. At the end of this stressful day, this was a great calming moment.

A date with Alejandro from Madrid

So my friend Rachel has developed this motivational tool to help her work out. She has nicknamed her treadmill, Javier from Spain. When it's time for her to work out, she says, "I'm going to get all sweaty with Javier from Spain." Thus, I have decided to name my breast pump Alejandro from Madrid. Now at four o'clock in the morning I can say, "Time for Alejandro to play with the girls." I'm not totally sure this will help, but I'm willing to give it the old college try!

Enemas, Chest tubes, and Transfusions: Oh My

Jaden had a long, but successful day today. His enema went well. They weren't able to get it through his whole colon, but it should be improving within the next few days. They removed his chest tube--this tube was originally placed in his right side to keep pressure in his collapsed lung in order to keep it open. It has been turned off for the past two days, so the doctors felt comfortable enough to remove it. He will receive x-rays throughout the night to follow the progress of his enema as well as changes in his lungs. Late this evening he began another transfusion. He is much lower than he needs to be, so we're expecting many transfusions in the future. For an adult this is a busy day, but for a "micro-premie" it's a huge ordeal. And for the parents of a "micro-premie" it's a LONG day! But when I left a few minutes ago, he was sleeping soundly in his bed and with that thought I will fall into my pillow and sleep soundly--well for the next three hours, and then I have a date with a breast pump, lol!

Blog title

I wanted to explain the story behind the title of this blog. My husband loves to read. When I met him, his favorite book series was the Hobbit/Lord of the Rings. In this series, Bilbo Baggins writes a book entitled To There and Back Again: A Tale of Bilbo Baggins. The book is about Bilbo's struggle through an adventure, complete with both high and low points, and one that is outside his normal life of comfort. While showing his growth as a person and the love of fellows that he ultimately shares, concluding with a wonderful share of treasure at the end of his adventure. I purchased special edition versions of these books for Joe early on in our relationship...and, as we like to joke, forever sealed his love for me! And so, we thought it appropriate that Jaden's blog be representative of  that story and the love we share!

Happy "one week" birthday, Jaden

Today, Jaden turned a week old. This week was filled with ups and downs, but today was a good day. He remained stable with no major scares or changes to his status. For the first time in three days, mom and dad were able to breathe a little more. The doctors are changing his antibiotics to cover as many "bugs" as possible. His cultures are not showing an infection at this point, but they're trying to tackle anything possible. His chest tube has been turned off, with the hope that his collapsed lung has again improved so it can be removed. The plan is to continually wean him off the ventilator. We may see him back on the CPAP this weekend. I can only imagine the look on my face when the doctor told me this, as he quickly began to explain the importance of this huge step for Jaden. We need to allow him to control his own breathing as soon as possible, even if it feels for mom and dad that they move a little too fast. Understanding the need for something does not make it easier to prepare for. However, prepare for it, we will--survive it, we will--pray for peace, patience, and safety, we will!

A moment of positivity

I hate leaving things on a negative note, so I wanted to express how I mostly feel. Joe and I are truly blessed to have received all the amazing love, support and prayers from all of you! This journey will not be an easy one, but it will be one touched by the grace of God. We have placed Jaden's life in God's hands and we will keep him there! The Lord is watching over us, calming us, moving us throughout this journey. Our friends and family have been amazing throughout and we know that this will only continue and grow and time moves on. My husband is the greatest man I have ever known. He knows how to anticipate my needs, knows when to hug, when to hold on, when to do whatever I need. I could not ask for a better partner in life as well as in this experience.

A moment of negativity from a mostly positive mom

Watching my son fight for his life everyday is grueling and painful. Not being able to hold him, to bath him, to feed him is heart breaking. I pump and it gets stored in a freezer, hopefully to be used later. There is no bonding in my breast feeding experience, no tender moments, no loving embraces. It is simply mechanical. I imagine that telling a mother who cannot, but wants to breast feed her child, how wonderful it is is like telling a paralyzed man how great it is to walk. Okay, maybe not that severe, but you hopefully get my point. In less than 2 weeks, my husband will return to Afghanistan and I will begin this journey on my own. I know that I have support and love and prayers everywhere and for that I am grateful. However, nothing can replace my husband's hugs or his total understanding of my needs! He is my very best friend and I will greatly miss him. I will then have to sit idly by as the two people I love most in this world fight their own specific battles so that they may come home to me.

From birth until now...

Upon birth, Jaden's air sacs were ruptured during resuscitation. A chest tube was placed in his side and he was placed on an oscillator that would breathe for him.After a day or two, we were finally able to touch him, but not yet hold him. As I would lay my hands on him, his heart rate and blood pressure would normalize and my heart would melt. I was finally allowed to change his diaper and feel like I was taking part in his care! He quickly advanced through the medication regimen and oscillator settings the doctors initiated--probably too quickly. The doctor's took him off of the oscillator and placed him on a CPAP machine. He initially appeared to thrive on this machine and was breathing on his own. Yesterday his lungs began to bleed and he would stop breathing, several times, in front of his mom. They removed the CPAP, placed him on a ventilator and gave him blood products to help normalize his stats. When we walked in this morning, he was stable. However, upon returning from lunch, we learned that his pneumothorax (collapsed lung) had returned.