This is my norm

Miracles around every corner!!

Today has been the greatest day we have had in a long time! First off we thought Hayden was coming down with chicken pox last night so we took her in and she just has a rash but no pox 🙂 Right after that on the way home I called NICU 3 where Ella is, and got a report that she only had one apnea episode the entire shift!!! and her xrays are totally clear and she is FREE OF PNEUMATOSIS!!! It is gone…totally gone! I must have confirmed with the nurse a thousand times! I couldn’t believe that in 4 days it had vanished. It was supposed to be a two week ordeal at the minimum, but our God is a miracle worker and he turned the tables and she is healed!! They are still holding her feeds for a little while and running xrays to make sure it doesn’t come back. Thank you for the prayers because no job is too hard for God. He doesn’t need 14 days to heal, he heals right on time.

Then just now I called Preslyn’s nurse and this is pretty much how the convo went:
“Hi this is Preslyn’s mom”
“Oh, Hi mom, its been a great day. Preslyn is off her oxygen cannula, she is off her TPN/Lipids (nutrients by IV) after tonight, she is off her antibiotics..because her cultures came back negative for pneumatosis. She has had no Brady’s today (Oxygen saturation going down), she is off her incubator warmer and is regulating her temp on her own, she is wearing clothes again, oh….and she started BOTTLE FEEDS today and did great, and she weighs 3lbs. 15oz.!!!”
” ” (Yeah…that is me, dumbfounded)
I kept waiting for her to say….”and tomorrow we are discharging her”

I couldn’t ask for anything more. Especially in one day!
My God ROCKS my face off!

NICU day 12

I haven’t had much time between trying to survive on three hour intervals of sleep…watching a two year old, recovering and trying to make frequent trips to the NICU, but I know there are so many people checking this blog so I wanted to update on the girls.

Ella tested positive for the pneumatosis, which is bubbles in the lining of her stomach. This can be a precursor to a tear in the lining which is fatal if not treated by surgery immediately. The nurses told us that whoever caught this was on top of their game because most of the babies are usually already to the point of surgery before it is caught. I serve a big God and I know that He put that person there at that exact moment. So she is not able to eat until this goes away, which will probably be a couple of weeks. She is also having apnea very frequently and last night when we were up there we witnessed them and it was one of the most sickening feelings to watch my child stop breathing for 20-30 seconds at a time and just lay there perfectly still. It panicked me every time and a couple of times we had to stimulate her to get her to start breathing again. I mean we were pushing her, hard! and she still wouldn’t wake up. I hated it. They said that she is just so sick that her body has to rest even to the point of not letting itself breathe at times. She is so tired and exhausted from being poked and prodded continuously. As of today she only had to be stimulated once and is starting her breathing back on her own after an apnea spell, so that is good. And her oxygen saturation is good as well. Her most recent x-ray showed a slight improvement in the stomach, so that is a blessing.

Preslyn also decided that she would follow in her sisters footsteps and started displaying symptoms of the pneumatosis as well. So they worked up a panel on her (including spinal tap) and we are still waiting on those results to come back. As of right now they are still negative and we are believing that they will remain that way. She is still tolerating her feeds well and hasn’t had to stop them yet, which is a good sign. They started the antibiotics on her as well. So she is still in the level 2 nursery and Ella is in NICU 3.

Thank you for all of your prayers and calls to check up on us. We really appreciate everyone! We are trying to take hold of whatever God has for us to gain out of this experience even though sometimes it seems unbearable. I know He is still in control and has a mighty plan for my girls and for our family.

The nature of preemies

Well the girls have been doing well…not making big strides as they had been, but still doing ok. They were transferred down to the level 2 NICU and then Preslyn started having some apnea (which is when they fall asleep and forget to breathe basically). So they put her on a nasal cannula at a very low rate and that seemed to fix her up just nicely. Ella on the other hand has been cruising along just great, no problems.

Last night BJ and I got to go up to the hospital again and we were going to do Kanga care again. BJ got to do it with Preslyn, but when I tried with Ella, she kept having Brady’s which is when her heart rate goes down and her oxygen saturation trails off too…. so I decided to just hold her and talk to her and love on her instead of doing the Kanga care. It was amazing to see them with so little on their faces. BJ and I hardly recognized them when we first walked up. Plus they are now able to wear little clothes, so it makes them look so different.

We got home after a long day. Hayden’s school called me halfway through the day and informed me that she was running a 102 degree fever out of nowhere. So we had to go pick her up and make sure she was ok, but we think it is her molars trying to come through, because she is totally fine today. She ran fever through the night, but lower and then it finally broke. She keeps saying that her teeth hurt her, so maybe that is what happened.

Anyway, around 11pm my phone rings and it is the NICU calling to say that Ella has all of the sudden wigged out and started having apnic episodes very frequently. All of her vitals are saying that something is wrong. So they started running a panel on her because they immediately think bacteria or infection when that starts happening. It was really scary and to know that my one week old daughter was about to undergo a spinal tap and I wasn’t even there to hold her or comfort her about ripped my heart in two.

So right now we are waiting on the cultures that they took to tell us whether she is sick or just having preemie syndrome. They are leaning more toward it just being from her being a preemie, but it also looks sort of like pneumatosis. They started her on antibiotics in case it comes back and she has an infection, that way it is already able to start fighting a general bacteria. They also took her off her feeds and put her on a nasal cannula. So please say a little extra prayer when you think of little Ella. She needs a boost right now. And you can pray for us too. It’s so hard to know that your little ones are struggling and you can’t help them.

The nature of preemies

Well the girls have been doing well…not making as big strides as they had been, but still doing ok. They were transferred down to the level 2 NICU and then Preslyn started having some apnea (which is when they fall asleep and forget to breathe basically). So they put her on a nasal cannula at a very low rate and that seemed to fix her up just nicely. Ella on the other hand has been cruising along just great, no problems.

Preslyn…love the cheeks

We got home after a long day. Hayden’s school called me halfway through the day and informed me that she was running a 102 degree fever out of nowhere. So we had to go pick her up and make sure she was ok, but we think it is her molars trying to come through, because she is totally fine today. She ran fever through the night, but lower and then it finally broke. She keeps saying that her teeth hurt her, so maybe that is what happened.

Ella Marie

So right now we are waiting on the cultures that they took to tell us whether she is sick or just having preemie syndrome. They are leaning more toward it just being from her being a preemie, but it also looks sort of like pneumatosis. They started her on antibiotics in case it comes back and she has an infection, that way it is already able to start fighting a general bacteria. They also took her off her feeds and put her on a nasal cannula. So please say a little extra prayer when you think of little Ella. She needs a boost right now. And you can pray for us too. It’s so hard to know that your little ones are struggling and you can’t help them.