I have gone too long without updating and am now trying to remember everything that has happened since my last post. Steve injured his back late lat week and things went from hectic to, well, whatever is crazier than hectic. Steve is feeling much better now and life is returning to "normal."
Natalie had an echocardiogram last week that showed no evidence of pulmonary hypertension. This is wonderful news as her heart has returned to normal and will not have any lasting effects from the PPH. She does have an atrial septal defect (ASD-the valve between her atriums that should have closed at birth is still open) but that is not an immediate concern. They recommend checking again in six months and doing surgery at that point if it has not closed on its own. I immediately filed that away as something I will not worry about right now.
She is also on full feeds. It is still through the ND tube but full feeds mean no more TPN. No more TPN means she can go without an IV unless she needs a transfusion or IV meds. This is huge as they were on the verge of giving her a central line and that would leave her vulnerable to infection. They started fortifying the breast milk with human milk fortifier yesterday so she is getting extra calories and nutrients. So nice to know she is finally getting good nutrition!
The nitric oxide was discontinued over the weekend based on the positive echo. She tolerated the wean from the nitric well which was a relief.
Last week ended with much frustration. The smiles on the doctors' faces turned to concerned looks of frustration as she hit a plateau and took a few steps back at times. It has been a very trying time for all involved. Steroids became a frequent topic of discussion. Steroids reduce the inflammation caused by the vent and may help enough to allow a baby to be extubated. Once off the vent the there is no new damage and lungs can finally start to heal. Of course like most of the treatments in the NICU there are risks involved. Studies have shown IV steroids can cause developmental delays, especially when used on very young babies and at high doses. In Natalie's case they feel that at her gestational age and at the dosages they plan to use that the risk is less, but of course there is no way to predict.
It was a sobering decision to make, but when we met with the neonatologist tonight we agreed to let them proceed. It is her best chance to get off the vent and allow her to heal. The first dose will be given in a few hours and hopefully we will see improvement over the next two days.
In other Natalie news, I had a very nice visit with her Sunday afternoon. She was sleeping peacefully and her head was uncovered (she frequently has a cloth diaper over her head to block out light and sound since she is very sensitive to stimuli). While she was sleeping she smiled three times and it was incredible! I know it is just a reflex right now, but I had not seen it before and to get a glimpse at what her smile will look like was such a blessing for me. I swear it will light up a room.
Her nap ended when she wet her diaper and started to cry (still so hard for me to see her cry and not be able to make a sound yet). The nurse came over to turn her for the diaper change and Natalie managed to extubate herself. It was awful. She coughed and a nurse across the room said "Was that her???" They called for the doctors and there was much commotion as they had to bag her an reintubate. Luckily another mother called me over and helped to distract me. I know Natters has been intubated countless times but I have never witnessed it before and I hope to never see it again. While she was without the breathing tube they did a short try on C-PAP to see if she was ready. She was able to maintain her oxygen saturation well but it was obvious she was working too hard to breath and it would have tired her out before long.
Such is life in the NICU that the memory of her first smile will always be tied in my mind to the time I saw her intubated.
Tonight when we arrived she was resting comfortably and receiving a blood transfusion. Poor baby has another IV in her scalp (and another shaved bald spot). Right before I left the nurse dressed her for the very first time in real clothes. I couldn't get the camera fast enough. The nurse said she looked like a real baby. Really, if it were not for the breathing tube and her other wires you would not know that she is sick. She was so bright eyed and interested in what was going on around her. My favorite neonatologist came over to admire her and said she is acting "developmentally appropriate" for her gestational age. Such a relief to a mom who just sat through a meeting detailing all the treatments she's had so far that can cause brain damage.
Please keep Natalie in your thoughts and prayers over the next few days. We are very much hoping that the IV steroids make a significant difference for her and she will make great strides of improvement.
I hope to be back later with new pictures. She is starting to gain back some weight and get chubby cheeks. VERY cute.