Grayson - 3 pounds, 12.5 ouncesIn rounds this morning, the doctor said his plan would be to lower the pressure on both of them on Sunday. Scarlett would come down to 4, her last step to coming off the CPAP, and Grayson would come down to a pressure of 6.
Scarlett 3 pounds, 11.8 ounces
As of this evening, Grayson had a pretty typical day for himself; some moments of his oxygen dipping below 85 but bringing himself back up without medical intervention.
Scarlett also had a typical day for the most part, having had a couple Apneic spells where the nurses reminded her to breathe. I don't know if the doctor will decide to stall on weening her pressure because she is still not consistently at 21% oxygen (her baseline is 24-26%) and she is having these issues, but we will find out in the morning. Today, she also had periods where her heart was racing higher than they would like. They decided to do a 15-lead ECG to see if she was developing an irregular heartbeat but the night nurse had not heard anything reported back. They also didn't call us to tell us it was happening, so I am hoping that means it is not a big deal. We didn't find out until we called in to check around 11pm as we went down to visit with my mom, sister, and their families. After a string of great days in a row and hearing good news at rounds, we decided to head down to Dayton because my sister was arriving from Virginia.
The only other thing that seems to have changed is Scarlett's belly seems to collect more air than it had in the past. The CPAP pushes air into their nose and some of it gets into their bellies. Their feeding tubes are kept "vented" to let that air escape. I noticed on Friday night while holding her that she seemed to be pushing more food out than usual, because on two occasions I heard it bubble up and when I looked over it seemed like a lot. The Practitioner and nurse both thought her belly looked distended but said it felt soft (which is a good sign, if it hardens up it can be NEC which is not good!) In fact, while squeezing her belly, they were able to help her have a bowel movement! But this morning when we were there, we noticed she had pushed back almost more than 5mls of food. I share this because we don't think we should be worried about it, but if any of our NICU and/or medical friends think this could be related to an increased heart rate, please let me know. As always, I want to be as prepared as possible for our discussions in the morning.
These updates may not seem as positive today but we are still feeling great. A week ago these things would have probably seemed inconsequential compared to our other hurdles. Honestly this week has felt like it was too good to be true. They do call it a Roller Coaster ride for a reason. The thrill in roller coasters are you can't get used to the position you are in because it is about to change. Weeks 0-7 were more like a rocket ship taking off. The countdown began and we nervously waited to see if the weather would change (hoping it would) and the launch date would be postponed. When the timer hit 0, we had the thrill of our lives as we took off, but more force than you could imagine bearing down on us, squeezing us, seeing how prepared we were. We had the shear joy that we were astronauts headed into space but the fear that our rockets could blow up at any minute, knowing that statistically speaking that was a real possibility. But then we made it into space, and the ride smoothed out. Finally we were moving around our ship on our own, with Houston helping with navigation but leaving us on our own more and more until we can accomplish our mission and come home! But no one ever used that analogy, so maybe that is wishful thinking... but hopefully we'll learn there was something easily remedied causing her heart to race and there is nothing to fear!
And now, check out these beauties!
Grayson's obligatory 7 week photo
He looks a little concerned...
I like his shirt!
Scarlett's obligatory 7 week photo
She looks happy!
I think she is thinking, "OK dad, take this picture so I can get some food in my belly!"
Glad you were able to get away and visit with family...that was a nice break for you. Nearly 4 lbs??? Those sweet babies must feel like "little porkers" when you hold them considering where they started. I don't know about Scarlett's racing heartbeat or distended stomach but I do know that God has proven over and over during these past seven weeks that He hears the army of people who are praying for your family. Some friends from Cincinnati came to visit with Father Massucci and me yesterday and the first topic of conversation after the initial "hello" was how the babies were doing. It made me feel good because it re-affirmed that the health and well-being of the babies is always on the minds of complete strangers. As my Principal put it "I have never met them but I have grown to know and love them through prayer and the myriad of pictures you (meaning me) have shared." By the way, thanks for the latest pics to add to my "album" (folder).
ReplyDeleteDear God, thank you for the blessings of the week and thank you for the seven week milestone. It seems like an eternity and it is hard to fathom that a journey so filled with bumps and hurdles has only been seven weeks. But you have watched over your precious gifts and have brought them to this day. Please continue to protect the babies; heal Scarlett's heart and help her to be weaned from the CPAP. Mary, our Mother, your prayers and intercession with your Son have helped Scarlett and Grayson over some rough roads. Please intercede with your Son so that both babies can come off the CPAP soon (you know how impatient we are). God, please continue to care for Tim and Trisha - give them the rest and strength they need to do their work as parents of these precious twins. As always, we trust in your goodness and thank you for answering our prayers.
I love the pictures, enjoying each and every one. Love their little faces, their outfits and especially love their big, beautiful eyes! 7 weeks! Wonder of wonder, miracle of miracles! Look what God has done and what He continues to do! We do know God's goodness and we are so thankful for it.
ReplyDeletePraying that all of those concerns turn out to be small matters and easily remedied.
Blessings to all.