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....