change of plans...

hi sweet catherine-

so your insides were not doing as well as your outsides were leading us to believe...monday they did another echo and found that your pulmonary hypertension was still pretty severe and the right side of your heart was a litle hypertrophied. however, you still appeared to be tolerating the nasal cannula really well, so tuesday they decided to put you only on nasal cannula, without going back and forth to cpap. but tuesday night, after about 14 hours on nasal cannula, you started to drop your sats (you couldn't keep your body oxygenated well) and they put you back on cpap. then throughout the night you were still struggling to breathe and they increased the pressure you were receiving from it. so wednesday they did some more tests-found that your CO2 in your was still high (meaning you couldn't ventilate very well) and that the BNP (brain natriuretic peptide-indicates heart failure) was almost 1800 (normal is around 50=(). so this meant that basically you did a great job of pushing through some of the stuff that was harder for you, but your body was getting to the point that it couldn't do it anymore. so you were working harder to breathe, your CO2 was increasing, your pulmonary hypertension was high again, and the right side of your heart was starting to fail as a result of it. and all of these things work together as a vicious cycle and make each other worse. so they started talking about putting you back on the ventilator to see if that helped get the CO2 off, decrease your work of breathing, and therefore hopefully help the pulmonary hypertension and help your heart. then if the ventilator did help those things, we would probably move to getting you a trach in the next week or two for long-term ventilation. remember how mommy was so scared of a trach? the nurses and respiratory therapists sat down with me throughout that day and talked all about other sweet children who have had trachs and have done so well and thrived and run around playing like it's nothing=) point being: i feel much better about you having a trach and i'm kind of to the point where i just want to do it and get on with you getting used to it and us learning how to take care of you with it. you would get to go home with it (the doctor said it would be "from weeks to months" that you would need it) and breastfeed with it and do all kinds of normal baby things. so i'm ready=) i hope you are too sweet . they did end up intubating you again yesterday and so far the ventilator and nitric oxide is helping you a lot. the gases are much better, you are obviously not working so hard to breathe, the echo of your heart showed decreased pressures meaning the pulmonary hypertension is getting a little better, etc...so it is helping. and that means we are likely to get you a trach pretty soon sweet . we can do it. yesterday you were a little grumpy about the tube being down your throat and the nurses and doctors were trying very hard to find a good balance of sedation medicine for you. i think they've found it because today you've been a very happy -taking naps here and there and while you're awake you've just been looking at me and even smiling a little around that little tube=) you've gotten a little puffy again-you got a transfusion yesterday and a lot of iv fluids so that makes sense. you are still the cutest baby i've ever seen=) your oxygen saturation monitor is on your hand and you keep holding that hand in front of your face because it has a little red light on it that you like to look at. it's very cute=) it's great for mommy to see you still exploring your little world even when you have a machine breathing for you. it's crazy too. yesterday you and i were both sitting there crying while we looked at each other-you because you were grumpy about the tube i'm sure, and me because it's so sad to have seen you breastfeeding and doing all sorts of normal baby things last week and then now you're back on a ventilator. and i seeing you upset. but we were being buddies, you and me. keeping each other company and telling each other it would be ok. that's what i imagined you were telling me, at least=)

so this obviously pushes everything back a little. you will clearly not be home in a few weeks. you will also not be transferred to chippenham next week like we originally thought. it will take maybe another month to get you there-they just want to get a good handle on what's going on with you and what the best plan is to help you. and mommy has to go back to work. i will miss you so much sweet . i'm starting to cry a little just thinking about it as i type. but we'll make it, won't we=) i love you so much sweet baby-you are my favorite little person to play with and i'll go back in the nicu now to rub your sweet head=)

mommy

ps-daddy has been missing you so much this week-he's been sick and has made himself stay away from the nicu. he'll be back soon to sing to you some more and call you buddy=)