The first 2 days are clear in my memory..however, the rest of the time was a blur so the following are texts that were sent to update people on Bella's status since I was unable to journal anything...
-Bella is doing great! they are possibly going to trial her off ECMO on Christmas..what a great present that would be!
The surgeon had to come in and move the cannula's a tad bit because they were a little too far in.
-Ronald McDonald is closing for the holidays so we get to stay at the Hampton Inn for free...I could get used to this!!!
-They are going to trial her off ECMO around 10pm. She has been moving a lot today--its very nerve wracking!!
-Decided not to trial her off until the AM. The chaplain came in and prayed with Ryon and I..for Bella's health and for our strength.
-We ate at waffle house for Christmas dinner...just thinking about it makes me sad..this isn't how things were supposed to be..
8:42am We called to check on her before heading over...and they were in the trailing off period..wow!
9:07am the Dr called to get our permission to take the cannula's out of her neck-she did good during the trial off period and everything looked fine. They were also going to put in a central line. Hoping its just another 7-10 days!
2:21pm completely off ECMO and they said shes doing good-no possibility of her going back on! They also haven't had to turn any of her meds up...its now just a slow steady process of bringing them down.
They were able to bring her oxygen levels down a little..shes doing phenomenal!(per Janet) She wasn't as heavily sedated and she opened her eyes a little and was moving around...I was so happy to see her eyes for the first time since she left Winchester.
Shes 1 week old today.
She had a rough night so they changed the her ventilator over to the smaller conventional ventilator instead of the oscillator. She seemed to respond well. They gave her some saline to loosen the secretions..this helped with with her sats
Got to do oral care today(swab breast milk in her mouth to give her some of the antibodies and such)
She keeps having these bad spells.
Episodes are happening more frequently. The Dr's are talking about possibly putting her back on ECMO..it would be very difficult though. Her sats need to be 95-100 and they are dipping into the 60s-70s. Dr's are trying everything. She does really really good for a few hours and then back to bad...so frustrating!!
PM-heading back home w/Ryon for his eye surgery, to rest, and do laundry.
4am phone call from the DR telling us that Bella was not doing good and we needed to come back to the hospital and be at her bedside. Her sats were dropping and they were having a difficult time bringing them back up. We got our things ready and they called us an hour later to tell us not to rush...we left anyway and got to the hospital to things the same as they were before we left..... they weren't making any changes just keeping her "happy"
Jan 1st: "Happy" New Year!!
Sats were good for more of the day..5pm they dropped and stayed very low..she had a few episodes through the night.
Came in to hear that Bella has a big episode at 5am. It took 1-1.5 hrs for her numbers to go back up. By 7am they were fine. Cardiologist came in to do the echo to check for possible damage to the heart-everything looks fine.
Our nurse today suggested that we get her Baptized if we were planning on it in case anything were to happen so we could do it in a somewhat calm way instead of rushing to do it... we thought it was a good idea so our mothers and Ryon's sister Devon drove down for the day..Tammy was already down here with us.(Ryon's mom and sister were on their way to the airport because Devon was supposed to fly back to CA but changed her flight so she could be here)
4:45pm--WOW..it was very emotional to say the least. Ryon and I held the water which was in a shell while Chaplain Ginny said a few words and then placed the holy water on her forehead. There were partitions up around her bed spot to make it more personal and for a moment block out everything else going on. She normally has her spells around this time but we were fortunate that she didn't...we were with her for a little while after and then our mothers and sisters left so it could just be Ryon, myself and Bella.
5:15pm She had one of her bad spells...I'm pretty sure they changed out her drips, which is usually why she has episodes at this time because shes not getting the support for a moment...
Jan 4Th: MEETING DAY.
I am so proud of Ryon..hes so strong and he stayed composed during the meeting while I was a blubbering mess! The doctors pretty much just said everything we already knew..sitting with her most of the day the whole time we've been here we are pretty much in the loop and know whats going on minute to minute. We(meaning Ryon because I couldn't get any words out) basically said do everything you can do to save our daughter..we as parents want her here.. however we don't know when enough is enough..we just don't want her to suffer. They don't have answers...and we know that..so the meeting didn't really seem to help...
Bella's SATS dropped around 5:45pm. They were bagged and suctioned her and it was taking a while to get them back up...I got very upset which normally happens when they have to bag her because she just looks like shes in pain..so Ryon and I left. She never fully recovered so they did an xray and discovered a pneumothorax on her right side..so they had to put in a chest tube--shes VERY touchy and actually tolerated them putting it in.
Bella had an episode at 7am when they changed out her Flolan...typical for her tho
The xray showed the air was gone. Her lungs were a little foggy but it is probably because of all the saline and fluids that she is getting.
Having a problem getting day shift and night shift on the same page--FRUSTRATING!
In the meeting yesterday they said they weren't going to make any quick changes to her meds--but the night time nurses went up a LOT of her epinephrine when yesterday they went down quite a bit. So its constantly up and down...
The doctors and our nurse decided(finally) to put together a "team" of RNs that have been with Bella and KNOW her. Its frustrating having different RNs come and go...there was no stability...having a group of nurses that know her and how she reacts and what to do when certain problems arise makes it easier on us as parents and most importantly on BELLA!
We have a team of nurses that we really like and are comfortable with...woohoo. Glad weve got that taken care of and dont have to stress about that.
-Milrinone was turned off at 11:30am. It wasnt helping or hurting...so no reason for her to be on something just to be on it...We were just happy to see one of her pumps gone...She still holds the award for most pumps tho!(about 12)
Bella had a good night. They were able to wean the Epinephrine to .06--yesterday at the same time it was at .15 normally her SATS would drop when they weaned by .01 so to bring it down that much and her keep her SATS up is good news.
The night RN said shes not doing as good as this morning when she left(which confused me because it seemed as though she was doing better) Her numbers looked good and the epi was weaned to .03 and since 7pm she only desated 1 time around shift change but they were able to bring her SATS up by just changing the vent settings...her oxygen was brought down to 97...seeing it come off 100 made me hopeful things were going to turn for the better...the NP came over and said she thinks shes about to turn the corner...every time we get good news or someone says shes getting better I try not to get too excited because its always 1 step forward and 20 steps back...I do have to say I was a little excited when she said that--still cautiously optimistic! I was able to go to sleep on a good note.
3am phone calls are never a good thing.. They called to tell me she developed another pneumothorax and had to put in another chest tube. Their goal today is to work on bringing down the tidal volume on her vent settings. The epi was turned completely off from 12am-4am but had to be turned back on because she started to desat. It was turned on the lowest it can go though.
Around 5:30pm the surgeon came up and put in another central line...because she has so much edema he wasnt sure if he would be able to put it in but he came out and talked to us and let us know he was able to..but with all the swelling theres a greater risk of infection she he will be checking on it over the next few days.
Got a phone call around 9:30pm from the DR telling us that after the central line they were changing one of her chest tubes to a larger one..In the process of doing that they discovered ANOTHER pneumothorax on the left side so they put in another chest tube...total of 3 so far!!
10:30 am-SATs are staying in the low 80s high 70s. Normally they would change the peep on her vent but Dr Boyle feels like thats not helping so they wanted to try and let her recover on her own...so far its not working.
They decided to put her back on the oscillator because its more gentle...but at the same time more aggressive...so it seems like a step back-just hoping she doesnt keep developing these air pockets!! I went back to the RM house to rest...sitting by her bedside listening to the oscillator was exhausting and I couldnt handle it.
On my way back to the hospital after resting the DR called and said they changed the larger chest tube back to the smaller one and saw another pneumothorax...so another chest tube was placed...so far shes got 3 on the right side and 1 on the left.
-Another family meeting was scheduled for Monday..
We went back to see her for about 30 minutes before shift change...
Once we got back to the RM house I lost it, i couldn't stop crying...i felt as though the Dr's lost hope and I had given up. I was so exhausted and i felt so alone. Its so hard not having Ryon with me(and its just as hard on him being away) Even with my mom here and other people coming and going its not the same...The only person I want to be around is him..hes the only one who knows EXACTLY how I feel. We have so much support and everyone is going through this with us but I would rather be alone. Answering question after question from everyone can be even more stressful...I want to update on my time--am I being rude?! I hate that I have to deal with the stresses of having a very ill baby and then on top of that having to try and repeat everything that's going on to everyone constantly... OK now I can breathe a little.
So I ended up not going back to see her after shift change..I was just too emotional and had a migraine from crying...I sent my mom over to give her a kiss from me and tell her that I loved her...I felt so horrible and like a bad mother...I told her I would be back to see her and I didn't go...I needed a break...its such a struggle...I need to be with her but I needed a break--just ended up crying myself to sleep
OK now I'm caught up so I will update day to day...