I think this may be a short entry today. Naya had another great night last night. Not much fluctuations in her blood pressure or saturations for the first time in a longgggg time. When we came in this morning her stats were beautiful and she had lost even more weight. We finished off the day yesterday with a -215 in fluid intake/outtake. It was actually a pretty quiet day here. It was so quiet, it was actually eerie. The monitors are set to go off whenever one of the patients stats fall below a certain range that their doctor has set for them. We barely heard those noises all day. We actually only heard them at the end of the day because she had another blood transfusion and her blood pressure kept going up! Apparently, my daughter is a vampire because she really, really likes the blood transfusions. They had to aggressively come down on her pressers because her blood pressure was so high (we had to come up again after the transfusion was completed but that was to be expected). We are now sitting at a comfortable level for pressers and they should be coming down even more tonight. One wonderful sign was that despite the drop in her blood pressure after she got the blood, her pulse and her oxygen saturation remained consistent. This is almost unheard of for Ms. Naya, the bubble beard. It was amazing - she was blowing bubbles all day and they would land on her chin and form a beard of bubbles. Like I said, she is a talented little girl.
Right now, her stats are still looking great and her oxygen saturations look better than I have ever seen them. She is also looking at another -200+ fluid input/output day. I can't say it enough how happy and proud of her we are right now. We are truly proud of our little miracle. Everyone here is rooting for her and it was truly amazing how the mood was changed in her room today. Much lighter with a lot of laughter, even from her attending doctor! I was able to get a lot of work done and we were all sitting here, a little bored. It was actually a really, eerily quiet day today throughout the entire ward. It's crazy how quiet and calm can start to feel weird. We were also lifted from isolation (which she was on because of the bacterial infections) so we almost got a roommate today. I told them no boys though because she is not allowed to have boys in her room. The baby ended up being put in the room next door (not because of me though) because that room was completely empty and it is a little preemie coming in. Oh well, at least we still have this whole room to ourselves! (We literally have the biggest room in the whole ward - I call it Naya's penthouse suite.)
Dan got me a homework assignment today too. The manager was in here earlier working on the parents NICU directory with the charge nurse working in Naya's room. She was asking for our opinion and Dan suggested that there should be a note from a NICU parent in the packet to give it a more personal touch. Guess who gets to write that now. Thanks hubby!
We also had something strange happen to us on the way back here from dinner tonight (we were walking back from happy hour at Home Restaurant in Los Feliz). We were stopped by a hipster mustache guy who told us we couldn't walk in a certain part of the sidewalk because it was too dangerous. We were super confused because there was nothing there. He then said they were shooting a movie and that's why we couldn't walk there. Again, we were super confused because there was NOTHING there. So we walked on it anyway. Oh, Hollywood. Gotta love you. I will have to walk out tomorrow and take a picture of the gigantic Scientology building that is next door to this hospital. That will really show how special this place is.
Good night everyone. Please pray that we have more days like the past two and that the corner is finally being turned. We appreciate you all!
Ty and I read this together tonight. and Ty just wants to say, "Watch fish stick sandwich burrito and wish Naya a good week!" We love you.
ReplyDeleteSO happy to read this. Yes, more days like this please (minus the crazy sidewalk guy). :-)
ReplyDeleteGotta love wierd hollywood hipsters... or as my dad refers to them "hollyweird". Love you guys. So happy to hear of Ms. Nayas improvements. Oh, and thats nice that Dan got you another job to work on! haha. Youre a busy mama!
ReplyDeleteHi, Jamie -- this is Johanna Rubba, you're old teacher from Cal Poly -- I saw the piece about Naya in today's New Times and looked up the various links they gave. I'm so sorry you have to go through this torture! I can't imagine having a new, tiny baby who is so beautiful and then has to go through this fight for her life! I'm glad you have your family and friends to support you and your husband. I read all of your blog entries and it was such a relief to read that the edema went down so much!
ReplyDeleteYou SHOULDN'T be blaming yourself for your daughter's troubles. You didn't do anything wrong. Sepsis is not all that uncommon in newborns, and there's no way you could have avoided it. The docs you saw should have panicked a little sooner, but lymphangiectasia is so rare.
Again, it's great to hear she's lost a lot of the swelling and that she's putting out a lot pee. It's also wonderful how she responds to music -- keep that going!
I sure hope they can free her up soon from whatever lines and tubes she's hooked up to so you can cuddle her and really let her feel the love!
You can bet I'll be thinking about Naya and you and Dan. 9/18 is the day before classes start, but I'll try to make the picnic. If I can't, I'll send a donation.
You go, Naya!!
You don't know me. My name is Denise and my cousin Sara is one of your friends. Our church has been praying for Naya since the Sunday before her great improvement. My heart breaks at the tough decisions you and your husband have had to make and it also breaks at the stuggle and battle that Naya is going through.
ReplyDeleteI am a mom of a special needs child who was born with a chromosome deletion (we didn't find that out until he was 7 years old). They did a CAT scan when he was 3 months old to find that he had more fluid and less brain tissue and they felt it was atrophy (the brain will continue to shrink). We were to expect the worse. If he survived he would never walk or talk or be able to feed himself. After much prayer we took him in at 15 months and his brain had filled the empty spaces and they didn't understand why. I know why...God. It has been hard work, but our son is a freshman in high school. He is in Special Day classes, but he walks, talks, feeds himself and is a great guitar player.
My youngest son was placed in NICU within hours after being born with Pneumonia. The hospital where he was born could not keep his O2 sats above 60 and had to transport him to a different hospital and he wasn't even 24 hours old. Praise God he did a complete turn around and was home in 7 days. He is 7 now and has grown of the asthma that this had caused.
I only tell you this for two reasons one for encouragement because we do not know what God has for Naya and the other is to let you know that I have been near your shoes. I do not know all that you are going through. Some of the decisions you face I have not had to face. But some of the fears you have I have had and I have been amazed at all that God gives parents who have children with special needs or who are seriously ill.
I commend you and your husband for sacrificing yourselves for the greatest benefit to your daughter. That is such a selfless act to want what is best for her even if it means losing her. That is the hardest decision a parent ever has to make and one most of us never want to go through. I will continue to pray not only for Naya and what God feels is best for her, but for you both to have comfort, strength and the peace from God that surpasses all understanding.
I know God answers prayers. I also know they are not always the answers we want. He knows what is best for her (whether to be here with you or in heaven). I hope I didn't step out of line with my words or on your feelings. I just wanted to let you know your not alone, that we are praying for you along with everyone else you know and if you need an ear to just vent, scream or cry you can e-mail me and I will be glad to send you my phone number so that you can call anytime day or night for that extra support or that shoulder. 1dshaight@gmail.com
Thank you for sharing your journey and for the opportunity to share with you.
God Bless,
Denise