"One isn't necessarily born with courage, but one is born with potential. Without courage, we cannot practice any other virtue with consistency. We can't be kind, true, merciful, generous, or honest." Maya Angelou
I liked this quote as I sometimes feel that I am still developing that potential I have for courage throughout this mostly difficult journey. Some days I truly feel exhausted and that I cannot possibly emotionally carry one more burden and then some days I find the strength to smile and remember the great goodness that makes up the God that I know and love.
I wish I could say that these past few days have been easier then my last email. If anything, they have been some of the most difficult but I am grateful for those moments when with great clarity my heart is reminded that God is working small miracles with my sons and that I must not forget that these things are happening to preserve my sons and give them one more day to carry on and fight to grow out of their extreme prematurity and all the complications that have come with it.
Just when we thought perhaps both boys were finally turning a corner with their infections (Jonah had a real battle and they were changing his antibiotics, consulting with the infectious disease doctor and running all types of tests because it took him so long to respond to his medications), Noah started to show some serious signs of respiratory stress. Bless our sweet son Noah. Tests from yesterday showed that Noah has since developed the same bacteria infection that Jonah has been suffering from these past couple of weeks. The bad news is that the infection has settled in to Noah's lungs and he was maxed out on his oxygen yesterday, in fact at one point he desaturated so far that they were manually bagging him for nearly 8 minutes to try and stabilize his breathing. Shortly after that they had to return him to the oscillator, the breathing machine that he was on shortly after birth. It is a high frequency breathing machine and a more advanced ventilation system for only the chronically ill babies with serious CLD (Chronic Lung Disease).
I was at wit's end yesterday. Last week we had problems with nurses who were unprofessional, not following the proper protocol for the isolation room that both Noah and Jonah are in due to their infections (long sleeve gowns and gloves must be worn at all times and between babies everything must be changed and hands must be sanitized). Last Wednesday the particular pair of nurses we were having problems with forgot to give Jonah one of his antibiotics and it wasn't discovered until Thanksgiving day by another nurse. I was so upset, as was Shane, that we filed a complaint detailing everything that had happened.
When I found out yesterday that Noah was now ill with the same infection that Jonah had I was furious. I am so grateful there are patient representatives and good social workers who work closely with families to assure that the best possible medical care is given for all patients. I was able to collaborate with both and today a representative from the Center for Disease Control visited the hospital and came in to talk to me and said she would be making some changes and speaking with the nursing staff.
Up until now our motto has been that we want the nursing staff on our side and we will only draw attention to those details truly deserving attention. I always run my frustrations by Shane as he has a more logical ability at deciding if the situation really merits follow up with a supervisor. It is so easy to be picky about so many things when your child is going through long term care in a hospital that we try to be careful to only pursue those things deserving of attention.
I was grateful that there were people willing to listen and take my concerns seriously as I really had a hard day yesterday and I was completely heart broken to learn that Noah was suffering from a second infection when he had just only started to recover from the staff infection. The hardest part was watching them put him back on the high frequency oscillator. He fought the machine for several hours and finally they had to put him on an IV drip for sedation and pain relief so as to calm him enough to relax and allow the machine to breathe for him. The oscillator is a very unnatural way to breathe and it is hard for babies to not fight it, especially considering it has been 3 weeks since he has been on one and he has since adjusted to the regular ventilator.
I think the hardest part about all of this was we were so close to starting him on a short round of steroids so as to try and extubate him to see if he would tolerate the CPAP and if he did well then I could be holding him. I have been longing for this moment for the past two months and since I get such limited opportunities to even touch my sons at all it was very difficult to have Noah be set so far back in his progress.
Jonah, thank goodness, is having a good week. He is not completely clear of the infection and still showing some signs but he is doing better and is much more stable. Today they were a bit worried about the reservoir in his head. The fontanel is starting to bulge, meaning the fluid is not draining fast enough underneath his scalp and today they decided to perform a tap and removed a shocking 15 cc's (half an ounce) of spinal fluid. The course of action right now appears to wait and see if he can start to absorb the fluid on his own but if he continues to require taps to remove fluid they will eventually go back into surgery and replace the reservoir with the shunt which would be permanent in nature and require follow up surgeries and evaluations for life. I had hoped the reservoir would work but because his bleeding was so severe I knew it wasn't likely that it would ultimately replace the shunt, although it is still possible.
Today I am in somewhat better spirits. It really is a day to day experience and I just keep trying to forge ahead, some days with a better ability for courage then others but the important part is that I keep trying.
Thank you all for your well wishes, we are so lucky in friends and family. We are so lucky in our belief in God and for the gospel. I still struggle a lot accepting and understanding that this is my life now and that my sons came to us so early but I know with time I will have a better understanding of God's plan for our family.
Keep us in your prayers as we are praying fervently for better days ahead.
Love, Shane and Michelle