This morning we were called by the Piper’s neonatologist and a surgeon. She had spontaneously perforated her bowel and was spilling air, bacteria, fluid, and stool into her abdominal cavity. They obtained our consent and proceeded with an emergent surgery to place a drain in her belly. From the time the doctors recognized the perforation to the time of surgery was approximately 20 minutes- they caught it early. As a result of the perforation though, Piper has developed an infection in her blood (likely E.coli, although this hasn’t yet been officially confirmed). She currently is on four antibiotics to help fight the infection. The infection has spread throughout her body and has made her “septic”, meaning the infection is affecting all of her internal organs including her blood vessels, heart, and kidneys. Because of this sepsis, her blood pressure has been dangerously low all day and she has not produced urine since very early this morning. The doctors have tried to bring up her blood pressure with pressors, or medications that clamp down the blood vessels and help the heart to pump blood more effectively. As of an hour ago, her blood pressure finally stabalized, but she is currently on four pressors to help with this. She has not yet made any urine, but we are hoping this will happen soon now that her kidneys will be getting more blood flow (now that her blood pressure is better). Because of the fluctuations in blood pressure and because of her serious infection, Piper’s doctor was very concerned that she may have developed a brain bleed today. They obtained another head ultrasound as of 2pm today and we are happy to say that no bleed was seen. In addition to the infection, blood pressure issues, and surgery today, we have also been working on how to best support Piper’s breathing. She is currently on a traditional ventilator, but her recent blood gases (a marker of how well she is breathing on the ventilator) were not good. They will likely switch her over to a different ventilator tonight called an oscillator. This will be a machine that breathes for her at approximately 200 breaths per minute and will hopefully be gentler on her lungs and help her to ventilate better too. This has been probably the most emotionally exhausting day of my life. Jordon and I were at Piper’s side for 9 hours today and we truly were scared we would lose her. Her doctor keeps saying she is a fighter and I know in my heart she is.
I wish I could give you a hug right now. We keep praying for Piper and strength for you, Jordon and Paisley.
We continue to prayer for you and your babies.
Our neonatologist said to expect two steps forward and one step back. This will happen for a while. Keep the faith.
Thank you Jill. It feels like 10 steps backwards today. Did your babies face this serious of an obstacle? I’m guessing yes, because I’ve been told all premies this size will… but it doesn’t make it any less scary.
Katy didn’t but Eddie did. He developed NEC and ended up having a total of four surgeries on his intestines. They removed about 25% so he is not considered to have short gut. He did have an ostomy for a while and a bag for his poo. Eventually everything got connected and his plumbing works fine now. He also had a PDA ligation. Both kids’ ateries were open, Katy’s closed with the indomethicin, Eddie needed the surgery. For a while his IV stand looked very much like Piper’s. he’s got an impressive scar from his intestinal surgery – we told him when he is older he can decide if he wants to tell people he was attacked by a shark or by pirates. ;). Hope your little one is doing better today. The down days are hard. And scary. Best advice I can give is to take it day by day.
Your family is prayed for often by many.
We are continually praying for all of you. Please let us know if you need anything.
We’re so sorry to hear about today’s events. Stay strong, Piper is a fighter. Love to you all. We are continuing to pray.
May you feel God’s hands on your family. Prayers for Piper, Paisley and Mom and Dad.
There is not an hour in the day that I don’t stop to think about you guys and your sweet girls. You are ALL amazingly strong!
Lots of hugs, positive thoughts and prayers being sent your way!
Hi Sarah, my name is Laura Stier and I am a member of Immanuel Lutheran Church. We were in Froedtert at the same time and I actually think we were next door to each other on Labor and Delivery. Pastor Schneider mentioned you were there. My babies (triplets) are also in the NICU. I’m keeping you and your family wrapped in my thoughts and prayers. If you ever need a talk or need a break, I’ll be in the around the NICU each day as well. I totally understand how scary and overwhelming this all can be. Take care and know that our babies are in the best place and have the best doctors working on them!
Thanks Laura. I had heard about you as well and your triplets. Hope you all are doing well. Stop me in the NICU to talk if you ever see me (you will hopefully be able to recognize me from my pictures on the blog… sorry I don’t know what you look like!
We will keep you guys in are prayers and the twins.
Thank you so much for diligently keeping up with this blog everyday and making the extra effort to explain very step. I have been a silent follower but thinking about you and Jordan and Piper and Paisley nonstop from Portland. Matt and I are keeping your family in our prayers and look forward to helping out any way we can when we get to Wisconsin in August.
Love to you all,