Ups and Downs

Thursday, November 12, 2009


In wonderful news, we were finally able to hold Maya again. She is stable enough to come out of her isolette. Thank you, God. She isnt allowed to nurse because of the CPAP, but while her feed was hung, I propped the pacifier against my chest and she just went to town. That piece of silicone is the only thing that calms her down when she is throwing a fit right now. I wish I could offer her something more. As it is, I am as close to being inside that piece of plastic as the little arm doors allow. She is finally dressed and the temp is down to 28, which means she'll be in her crib soon. Because it is easier to keep the CPAP in place, I think they will wait to put her in her crib until she is back to the cannula (which we were told would be yesterday but now are told will be today). Her CPAP went down to 5 last night. She is so miserable with it. She will slam her little head face first into the bed. Then, she cries because it hurts. So, I'll hold her head and calm her and then, right when I think she is starting to really calm down, she will do it again. It is heartbreaking to watch. I want to rip that mask right off of her (especially since, when she gets it off, which is often, she saturates around 99-100). The doctors are being extra cautious because they dont want a repeat of Monday. Which we totally get. But we wont see a repeat until the steroids wear off, which will be this weekend.

Can anyone find what is different with this picture than ones previous?

Figured it out yet?

No? Okay, I'll tell you... Bobby is now at 100% feeds and no longer has an NG or OG tube. Our little chipmunk took in 80cc's at one feeding! Although, he seems to keep himself in the 50s and 60s. Unfortunately, I think he is the type that, if you put it in front of him, he will eat. And eat. And eat some more. He'll breastfeed until he falls asleep and then, the second he's moved, will latch on and suck again. No complaints from that end, though, since I know he cant really overeat at the breast. From the bottle... That's another story. I keep asking the nurses to NOT put so much in front of him. He will take whatever he's given!

But, as any NICU parent knows, this new and exciting development signals the beginning of the end... We were told to bring his carseat up last night. So, now it sits on his shelf, awaiting respiratory therapy to do his one hour challenge. We will see what this holds...

I spoke to them about what it means for us if we have one baby home and one in the NICU. The hospital's policy is no visitors under 17 due to H1N1. Thankfully, the NICU seems to make their own policies and they told us that IF Bobby is not exposed to anyone other than us and IF he is not around anyone who isnt vaccinated and IF he isnt around children and IF we maintain a healthy household (ie we dont get sick), then he will be allowed to come into the NICU in a carrier. They wont intervene with his care, of course, and if he gets upset or needs to be fed, etc, it has to be done in the parent room, but he will be allowed in to visit his sister.

This is a godsend. The patient advocate was actually talking to the head of neonatology about us and they came and chatted with me. I guess we are going to be the test case of this new policy that is against the hospital one. I hope it is successful for others. I met a mom in trans 2 weeks ago who couldnt bring in her one twin to see the other and it was rough- and they did it only for 2 days! I cant imagine... Not even one day... So, we will still figure out visits at night, but this means that I can go in and visit during the day. Bobby will count as the second person, except when visiting with Peter (when the 3 of us can be there).

So... It looks like Bobby may be home this weekend. And that Maya wont be. And part of me feels like that with 2 (relatively) healthy babies, I have no room to complain. But I am crushed. Utterly destroyed. I feel horrible that I feel this way when Bobby is at the end of his NICU road and he will be home, where he belongs. I should be overjoyed. And a part of me is thrilled. Because my little boy is coming home! And we have waited SO long for this day. But that is tempered by the knowledge that Maya isnt. That she has to stay behind. That she was on her way out the door too and because of this setback, her car seat remains in my car and her nipple feeds are a 0%.

She is a trooper and a fighter. Peter thinks she will go to complete nipple feeds as soon as she gets off the CPAP and is able to eat again. I hope he is right. I hope that this weekend shows her little trachea is healed completely and that a relapse is impossible... That she will be back to her old self and that we will have her taking her car seat test and ready to go home too... Soon...

Thanks for the prayers. Keep 'em coming!

20 comments:

cheryllookingforward said...

Bobby looks so great!
I'll be thinking of you for your challenge of having him home and Maya still in the NICU. It'll be tough, but it's just so great to see the end of this stay so close.

Amanda said...

You have every right and reason to be upset at having one baby at home and one baby in the NICU. Of course you thank God that they're both healthy, but you're a Mom and it's natural to be upset that they're no both home with you. My Mom got to take me home on day 20 but my brother had to stay in the NICU one more night...she sobbed about it and it upsets her to this day to think about coming home without both of us.

Maya is in my prayers for a great weekend with a beautifully non-swollen trachea! I can't wait to hear that she's back on the breast and on her way out the door!

Amanda said...

And way to go Bobby! Keep up that great growing and eating!!!

sprogblogger said...

Oh, such a handsome boy! And I'm so happy that the NICU is bending the rules to let him come back to visit his sister. I can't wait for you to be able to bring him home, and VERY SOON to bring Maya home as well.

Michelle said...

I'm so happy you get you will get to bring Bobby home! I understand you must feel so torn with emotions since Maya is not ready yet. She will be ready soon behind her brother! Keeping you all in my thoughts.

AKD said...

Congrats on a good day!! Keeping my prayers going that the twins are kept together - I'm sure it's incredibly hard to think of them apart for a second.

sara said...

You are completely justified in being sad and frustrated despite how wonderful it is that Bobby is coming home. Don't beat yourself up for your honest feelings. You're entitled to any feeling you have. I will think lots of positive thoughts that Maya will be out the door in no time also! They will be at home together, with you, SOON. I just know it. I'm sorry, though, that it's not right NOW.
--Sara

Just Breathe said...

That is exciting news about Bobby but my heart is so sad that Maya isn't joining in. I know that Bobby is going to have a very hard time without his sister nearby.
Praying that Maya's throat will be healed and perfect. Praying that she will be able to nurse and get in the car seat test ASAP. It is awesome that Bobby has no tubes!
Praying for all of you. OMG you are going to bring home your son.
If that isn't answered prayer I don't know what it!

sonja said...

I can't imagine how sad you feel about having to leave Maya in the NICU, but I am overjoyed to hear that Bobby may very well be coming home this weekend. Even though it must break your heart to have Maya be a little behind, it might be good in some ways to slowly adjust to having your little ones at home with you. You can get a really good routine with little Bobby so that when Maya comes home (and I am praying it is so very soon) you will have a much easier time of it adjusting to your new full house. I am so excited for you that this NICU journey's end is finally in sight. You can do this! Just a little longer now!

Still praying!

mybumpyjourney said...

How bittersweet that they are not going to be able to come home together. :( I am super impressed that the NICU is going to let you bring Bobby back to be with Maya though- that is awesome! I am so glad they see the benefit of them being together.
Hopefully people on the outside will respect Maya's health and still wait to see Bobby even though he will be at home. I would just treat your home as an extension of the NICU- gotta keep those germs outta there!!
I am praying for you guys, and for sweet little Maya's lungs.
{{HUGS}}

Kacy said...

Ya for Bobby! And I am glad Maya is looking better. I am still thinking about you guys.

www.infertilityinstability.blogspot.com

Nancina T said...

Oh Michele, it's so bittersweet to hear that Bobby is doing so well and so close to coming home, and that Maya is not. We pray for the two of them, and for you and Peter, every day. Come on Maya!!!

Missing Kasey said...

I am very excited for you! I hope that Maya follows her brother very very soon!!! You can do it Maya!!! I am happy that the NICU stretched the rules, its only fair! Many prayers headed your way!

Catherine W said...

So glad to hear that Maya is allowed out of her isolette again. I know that feeling of trying to cram your whole arm in through those tiny little doors. When J went into a hot cot, I still instinctively put my hand in as though the doors were still there!

And I am so, so pleased to hear that Bobby might be coming home soon. But it must be heartbreaking to know that it might be a little longer for your sweet Maya. I hope that the hospital can make arrangements to accommodate you, so that Bobby doesn't have to go too long without seeing his sister. For obvious reasons, it is very dear to my heart that they can be together.

I'm sure it won't be long and you and Peter will have Bobby and Maya back home with you soon. xoxo

areyoukiddingme said...

How exciting that they're getting Bobby ready to go home! I'm sure Maya will be quick to follow - sometimes girls need a little extra time to get ready for a trip. :)

Reba said...

i know it would be so much better if they could both come home together, but i am so happy and excited for you all that bobby might be coming home this weekend!! yeah!

gwinne said...

I understand your concerns about Maya. But oh my goodness...Bobby coming home?! That's just wonderful.

sarah said...

Such wonderful news about Bobby, even through it comes with it's own losses. Give Maya a head kiss from me!

Holly said...

So awesome that Bobby is taking all of his feeds!!

one-hit_wonder said...

So great that Bobby is THISCLOSE to coming home. I hope Maya's homecoming is soon behind! Glad that the hospital is making an exception for him.