I often wonder if I've reached my breaking point, but then life becomes a little more stressful and I realize I still have strength to stay standing. I am emotionally spent, I feel completely dry and like I'm drowning at the same time, I didn't know this was possible. The emotional roller coaster is underway and I keep waiting for it to stop so I can get off!
One of the difficult things about community living is that I can't stop myself from making connections with other mom's and developing a love for their children that are suffering like Hope. We moved here and quickly connected with another Calgary mom that was also carrying an HLHS baby and due around the same time as me. She delivered a baby girl last night and her little girl, Holly, was rushed in for an emergency Norwood this evening (that's the first surgery Hope will have). It is so difficult to see them hurting and walking such a tough road. After they told us, Shawn and I sat down with my mom and prayed for this family and their precious little girl. Please join us in praying for little Holly and for her surgery that is taking place as I write this.
Today was a difficult day from the start, I went to rounds this morning on my own as my mom was attending BSF and Shawn was dealing with returning the rental car. I came in to find Hope had an IV in her head and some of her hair had been shaved off. They told me the blood cultures were positive again and my heart sank, I felt defeat for the first time in this situation. The doctor came over and explained that the lines in Hope's umbilicus were likely housing an infection. Although she has been on antibiotics and the infection is not spreading through her body, they were drawing blood at the very source of infection. He had ordered the lines to be removed and two IV's to be put in. The drugs she's on do not mix and need to go through two different lines. The second line was later placed in her hand after a failed attempt in her foot, watching them poke her and the pain on her face brought me to tears and broke my heart once again. I called this evening to check in was told the line in her hand failed and was put in again, higher up in the arm I believe.
The nurse was supposed to take cultures one hour after the lines were removed to see if the lines were the source of infection and to help us hurry up and clear her for surgery. She was apparently not listening too closely. Over 4 hours later we asked if the cultures had been taken and were told they would not take place until tomorrow morning. I cried again and made it clear that I was not okay with this, the nurse had the doctor come over and was informed that he had already ordered the cultures and she had failed to take them. It was a good reminder that we need to be listening carefully and standing up for Hope to be sure she gets what she needs in such a busy place.
I spent the first 7 hours of my day in the NICU today, this is not a good idea. The constant beeping of all the baby monitors and alarms that sound every second are truly annoying. There is no privacy and the chairs are horribly uncomfortable, especially post delivery! I felt myself burning out and needing to get away, thankfully I had a surprise guest and was able to distract myself for some time in the evening and refocus before we start again tomorrow.
We know that God is in control of the timing for our surgery, but we truly feel overwhelmed by the waiting and will need the strength to continue this waiting game. We were told today that the surgeon we had hoped would perform Hope's surgery is going away on vacation next week. Unless he is working this weekend, we'll have another surgeon operating on Hope. We're trying to roll with the punches but feel like we're being punched in the stomach these days.
One exciting thing we heard today, was that Hope's struggles to breath were likely caused by the infection and not a weakening of her lungs. As a result, if surgery is not taking place until Monday, there is a chance that they'll remove her breathing tube. This would be a huge blessing and a massive encouragement to us. It would allow us to hold her more easily and spend time rocking her in the NICU. We weren't able to hold Hope at all today and that makes the 7 hours in the NICU very tiring as you sit and stare at her. We were also blessed to be told today that Hope's test results have come back and she has no genetic abnormalities. Praise the Lord!
Please join us in praying that the breathing tube would be successfully removed and that Hope would no longer need it, that the infection would be fully cleared and that removing the lines was the answer. Please also pray that we would get a date for surgery so we wouldn't have to continue wondering when it will happen. Thank you all for your dedication in praying for our little girl.