There are no "take-backs"

How many thoughtless words do we utter in a day? --Gwen Staud

Do we ever really see the impact of these words? Are their consequences ever truly known?

How often have I said, "I can't wait to meet you" to a pregnant woman's belly? I must have said it 10 times a day to my own belly. But I'm now cautious in my word choice. And when my friend, Emily, grew bigger and settled into her pregnancy, they were words I never spoke. They are words I will never say again.

Recently, my thoughts keep returning to a moment in my education, prior to Jaden's birth. For an acute care project, my partner and I were assigned a NICU patient. As we toured the facility, my baby kept kicking me. It was the most he had ever moved before and it remained constant throughout the entire tour. He moved as I looked upon the babies, fearful for some of their lives. He tossed about as I worried for their mothers and wondered why so many babies had no parents present at all. But what pains me the most is a stupid comment I'd made. I don't remember my exact words; I only know that it was a joke that my baby was fighting to get out so he could play with these babies. I believe I called them his "friends".

"He just wants to play with his friends" perhaps was my line. I don't really recall.

Two weeks later, Jaden joined our family, this world, and his "friends" in the NICU.

These words were not the cause of my son's early arrival. However, they are words that will be with me the rest of my life. They are pointless syllables combined to form a joke; and yet the bear the weight of the guilt that remains in my heart.

Blissfully exhausted!

My son's life is nothing short of miraculous. I could end this post with that statement and the past 4 months would be summarized appropriately! His journey into this world was frightening, his early presence in life a roller-coaster ride, and his time at home heaven sent! Jaden has been home nearly one month at this point and although we're exhausted from sleepless nights, we are blissful to have him home. We have finally entered a new chapter in our lives; turning the page toward our happily ever after.

When I was a child, I loved to read "Choose your own adventure" books. I especially liked that as I re-read the story, I could keep parts I enjoyed and try something new everywhere else. Our story is certainly like these books. I had chosen to have a healthy pregnancy that led to giving birth to a healthy child. What I got, was even better! It has been an adventure full of love, tears, fear, and God. This story has strengthened my faith, my marriage, my ability to survive and my belief in myself. It has made me a better person. I look forward to seeing how this story unfolds and I look forward to the continuation of the tale of Jaden Lease! 

New Jaden Pics

3 month Update!

My darling Jaden is 3 months old today! I cannot believe how this time has simultaneously flown by and dragged on! He has come so far in these past 12 weeks and I am so very proud of his progress. Although he measures below the 10th (and sometimes 5th) percentile for children his age, his growth is nothing short of amazing. He is now 16.5 inches long and a hefty 5 pounds! Jaden has already started growing out of his tiny clothes.He is now in a crib and on straight oxygen at 1/8 flow! He has been eating from a bottle for several weeks now, but has only been without his feeding tube for a few days. His feeds were pretty scary for a while--full of brady spells, apnea, choking, etc. He's been suffering from acid reflux and anemia. They've given him rice cereal for a few days to help prevent the milk from refluxing. It seems to have soothed him a great deal. Today he will start oatmeal for this purpose. He had a blood transfusion on Sunday which has all but eliminated his brady spells. He is able to keep his O2 sats up as well now! He had an eye exam on Monday that shows he is borderline for Retinopathy of Prematurity. He'll have a repeat exam on Tuesday to determine if the laser surgery is necessary or if it will improve itself. His eyes have slowly gotten worse over the past month, so we're pretty nervous that he'll need the surgery. He'll also get circumcised this week sometime as well which I'm sure will lead to a very cranky baby! Otherwise, he's a beautiful baby who LOVES to cuddle and hates his diaper being changed!

High hopes!

Life as a NICU mother is draining. It could empty me of all hope, and moreover all happiness, if I'd let it. Hope is what drives me through mud slick track I spend circling each week racing for the finish line. Hope wakes me up each morning and allows me to fall asleep each night. And hope is a gift. It is my gift, from God,  allowing my positivity and even my sanity to survive this journey. Without God, I have no hope. Without hope, I am lost. Whether my hope rises for an improvement in my son's daily abilities or in the reality of his homecoming, allow me to have it. Do not stand in hope's way. It is up and it will remain up, even when you tell me not to leave it there. My spirit may bruise for a moment should my hope be set, momentarily, too high, but it will heal. I will readjust my hope as needed and with it, I will persevere. Jaden deserves a mom full of hope and that hope, that survival gift from God, will help me bring him home!

Roller Coaster

There's something to be said about bad days in the NICU. The meaning of them changes the healthier your child  becomes. The first days of Jaden's life were the hardest on me. I was overcome with so many emotions; my body going crazy from the swift change in hormones, my mind racing to make sense of what just happened, my heart in constant fear of being broken. Back then a day he was still alive was a great day, even in all its roughness. I lived in a constant flux of fear and happiness.

As time passed, I became more relaxed. I learned to enjoy the small moments of normalcy we began to experience. The grand moments were that much more treasured. From the first time I held him to the first time I dressed him in his tiny clothes, nothing went uncelebrated. But throughout that time, the roller coaster ride of life in the NICU raced on. Bad days ran the gamut of collapsed lungs, failed extubation attempts, infection scares and backslides with breathing machines. Thankfully, the good days occur more often. Good days are the slow, clanking, metal part of the roller coaster ride, propelling us through the twists and turns and even dark tunnels of the rest of the ride. They give us momentum and without them we'd never leave the gate. 

As we get closer to a time when Jaden will join us at home, His bad days are less frequent. However, they still shake me as they always have. Today was a bad day for my little one. When they couldn't get him to breathe enough or get his heart rate up they had to bag him.--I'm sure you've seen ER or Grey's so you know what I mean--It took quite a while to get him back to normal and even after that, his brady spells were still much bigger than they've been. I was concerned to say the least.

And so I looked for the next slow, clanking, metal part of the track. It didn't need it to be too big as the finish line is already in site. I just needed a little more momentum. And then it came--our small moment that got me through the day and propelled me to tomorrow. My little man completed his first whole bottle. Not only that, but he did it without a brady spell. And better yet, I was feeding him. We had done it together! He smiled. I smiled. God smiled down on us. And our ride continued on.

Week 8 Update

Week 8 has been great! Jaden has graduated to CPAP and thrived on it! Throughout the week they decreased his pressure from 7-5 and have lowered his oxygen accordingly! Hopefully soon he'll move to nasal canula and we'll be able to see his whole face! I cannot tell you how much that excites me! I cannot give you a measurement, because they've been very different, so I'm not sure how accurate they really are. I mean, there's no real science in holding up a tape measure, :o). His weight is up over 3.5 pounds now, so his chubbiness, and correlating cuteness, is increasing! His swelling is still remarkable and the increased lasix doses are not working! I hope they find a solution to this soon. His feeds were increased to 11 ml/hour. They're holding off on really increasing this further until he gets rid of the excess fluid. He does seem to have some reflux issues at this point, but all in all they're not too bad! His bed is fully elevated and seems to be helping. Our holds have increased in both length and frequency, so I'm pretty excited about that! It's been a tremendously quiet week and I could not be more thrilled with that!

Permission Granted

One of the hardest things for me throughout this experience, is that I have no sense of control over the situation. The day to day events of a child's life are generally controlled by their mothers. This is not true for mothers of NICU babies. To date, I have made no choices in Jaden's life and I have very little rights where his care is concerned. As a mother, I often feel like a child or that I'm in the way. I have to ask for permission to hold him, permission to change his diaper, permission to bathe him. My whole day's happiness is based on the answers to these requests. A simple yes can make me smile--make the annoyance of it all fade slightly. But a "no"--well, that can crush me! I very much look forward to a day when I get to hold him as often and for as long as I desire; that my arms and heart are content from his presence. I want my arms to tire from his weight. I want to be the first to see his face in the morning and to be the one who calms him throughout the night. As of yet, this is not my role in Jaden's life. And while I'm so grateful for the great nurses we've had, I am ready to be his caretaker. I'm ready to be the one who wipes his tears, who settles him, who knows him best and sees him most! I'm ready to really be his mom!

New Photos

Jaden's first outfit

Alert during bath time! This is is CPAP/SiPAP mask.

10 million strong and growing: Week 7 update

Is this a Flintstone's vitamins kid? Wow, what a growth spurt he had this week! Our goal was to let him grow and boy did he ever! My baby is now 16 inches long and weighing in at a hefty 3 pounds 5.7 ounces. You read correctly...we have not only officially crossed the THREE POUND mark, but we've left it in the dust! It must be the breast milk (wink)! Speaking of that, Jaden is getting 10.5 ml/hour of breast milk. He is able to digest it all, but we're a little concerned because he is showing signs of acid reflux. He may have always had a little, but we were unable to see the effects of it with the breathing tube in the way. Which brings me to another great improvement. Jaden was extubated this week. He was placed on CPAP, but didn't last too long. He is now in SiPAP, which is just like CPAP, but it still provides a baseline breath rate for him. He is doing much better on this machine. The plan of action is SiPAP --> CPAP--> Nasal Canula with oxygen, so look forward to these progressive steps in the weeks to come! He's still having the brady spells, but we're hoping they'll be less frequent in weeks to come. He had a pretty big one yesterday. It was uncomfortable to watch, but I'm learning to overlook them. The importance is not whether he has them, but whether he recovers from them, so this is where I'm trying to place my focus! One unfortunate thing that occurred this week is that he is really swollen. I'd been telling the nurses and practitioners for days that his legs and eyes were swollen and they ignored me. He is now on lasix (a diuretic) to bring it down. It had worked for a day or two in decreasing the edema (swelling), but when I bathed him last night they were actually worse. His legs are tight and his big toes are red. It really looks painful and he understandably doesn't like them to be touched. Jaden has a new bed now. The amazing bed he had up to now, is for the tiniest babies, so he had to give it up. He is in a standard isolet now which lacks most of the bells and whistles of the previous one, but we're excited to be one step closer to an open bed and eventually a crib! He no longer has to be constantly warmed. We're able to wrap him in blankets AND dress him! His tiny little outfits are barely bigger than Joe's hands, so you can imagine their adorableness! I no longer have to do Kangaroo care, which I will likely miss at some point, but I love being able to hold him and see his face at the same time.

Week 6 update

Weighing in at two pounds 13 ounces, our little man has done quite a bit of growing this week! He is still 14 inches long, so the added weight has gone straight to his cheeks making them irresistibly kissable! We have been doing more and more kangaroo care this week, much to mommy's delight! Bath time is getting easier and more fun! By then end of both, he's generally sound asleep! He's up to 9 ml/hour of breast milk that has extra calories added to it so help him grow faster. Jaden did pull out his breathing tube again so they did need to re-intubate him. I honestly lost track on the number of times he's had a new tube placed. They've also gave him albuterol for two days to open up his airways more. The theory is that his bronchi are clamping down on his breathing tube making it impossible to breathe. The doctors feel that this is the reason for his severe brady spells. He's done so much better since the albuterol; so much so that he will continue to be weaned from the ventilator. The goal is to have him back on the CPAP machine by early next week. He still has some brady spells, but he can usually bring himself right out of them and when he has then during kangaroo time, I just rub his back and he comes right out of them. No more severe spells that freak his mommy out! He does have a new cover on his isolet that completely blackens out the light. Jaden LOVES it. He rests so much more with it on. And although it is harder to watch him sleep, it is quite nice to see him relaxed! The main focus, as always, is just let him grow, grow, grow!

When you fall off a horse....

There's something to be said about the magic of holding your child. In those moments, true healing occurs. It is healing that begins with your extreme tiredness and works its way through your life to your childhood. Holding Jaden, when things go right, is magical--his life so tiny and precious in my hands. However, having a severely pre-mature baby doesn't always allow for those moments to exist. Not only does it limit how often I get to hold him, but things can sometimes go wrong during those holds. To date I've held him four times. Three of those times embraced that healing power; beginning to erase the struggle the past 6 weeks have brought me. However, our holds have not always brought peace to my soul.

Jaden had stopped breathing and started to turn red during one of our holds. I called for the nurse as I stroked his back and gently shook him to restart his breath. I did everything they've told me to do, yet he would not breathe. His bronchi had clamped down on his tube so even it was not providing breaths properly. By the time the staff put their gowns and gloves on and moved him back into the bed, he was purple and not moving. My heart sank and tears streamed from my face. I was frozen in a horrible moment of time. Stabilizing him took only a minute or two, but watching the nurses work on him felt like a lifetime. And immediately, I felt guilt. How could I do this to my child? Was my selfishness in wanting to hold him the reason for this--was he just not ready, not big enough, not strong enough? How could I hold him again, if I were just going to hurt him? 

And that's just it. None of this is my fault, which is actually hard for me to admit. Jaden is a premature child--too premature!! He's going to have these spells whether I hold him or not, so why shouldn't I hold him? So yesterday, I got back on that horse I'd fallen off of and I again held my child. And the magic re-entered our relationship and I began to heal again.

Moreover, I have to remember that it's not my fault. 

It's not my fault. 

It's not my fault....

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!