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.