Here we are…day five for George and Henry in the NICU. #twinslife
Hello all…here is a quick update! I apologize for the length, but I thought most people would want to know how the twins are progressing. I am thankful to Julie Thome Pickett and her openness to share Sadie Margaret’s story, empowering me to share George and Henry’s story. I am also thankful to GHS’s Children’s Hospital and all the staff in the NICU!
George and Henry are doing well and hanging out in GHS’s NICU 2. We have wonderful physicians, nurses, and staff giving them round the clock care. The last few days have provided new milestones and new goals. They were moved from NICU 1 to NICU 2 on Monday, which is great.
NICU 1 was essentially a premie ICU with the purpose of a solving their immediate needs after they were born. They needed to breathe on their own and their body temperature regulate before they could be moved to NICU 2.
NICU 2 at GHS is a place to help them grow and prepare to come home. This can be deceiving, many people think that moving to NICU 2 means we will be home in a few days. We actually have been told to prepare for three to four weeks.
They have a few goals in NICU 2:
1) Teach them how to take a bottle consistently.
2) Prepare their bodies for room temperature.
3) Increase their weight close to their expected birth weight for 38 weeks.
OK…let me explain each portion of the above list.
Teaching them to take a bottle is a huge goal with numerous micro goals. Their little tummies are extremely small, so they need to begin to expand to not only get used to larger volumes of milk, but also increased flow. Each feeding is provided via their feeding tube in their nose, flowing over an hour. We have been allowed to give them one bottle a day for starters, with this milk is flowing roughly over a twenty to thirty minute period.
This is an important distinction since their tummies are learning to accept that much milk in a shorter period of time. Taking a bottle that is roughly 20 milliliters of milk which forces their bodies to burn more calories than the bottle provides, thus only once a day. But this bottle feeding is teaching them to suck and take down this milk and help expand their little tummies. The goal, to get them in a place where they are taking a bottle for every feeding over a two day period, helping them to gain weight. They want their weight to be back to birth weight by Monday or Tuesday next week.
Preparing their bodies for room temperature is a major milestone. Right now their body temperatures are roughly 36.5 degrees Celsius (97.7 degrees Fahrenheit), but the isolette incubators where they sleep are set to maintain the environment around 31 degrees Celsius (87.8 degrees Fahrenheit). Their goal is to slowly reduce the temperature in the isolette incubators to 28 degrees Celsius (82.4 degrees Fahrenheit), roughly room temperature. Many people would laugh because Sarah and I keep our house around 69 degrees Fahrenheit, the so called “Rettew Meat Locker”.
All of this is happening over a period of time as we get closer and closer to their original expected delivery date of 38 weeks (July 17th). If you do the math, that is roughly four and half weeks away. They expect us to achieve the first two goals over this period of time which will then essentially “deliver” George and Henry to the care of Sarah, Rose and I at their projected birth weights.
We are getting closer day by day! So, here is a little recap of their milestones from the last two days since moving into NICU 2.
1) Their CPAP was removed (they are breathing on their own).
2) Their IV’s have been removed (feed tubes are providing all the nutrients).
3) Bilirubin lights have been removed.
This is great because it is easier to get them out of the isolette incubators, change their diapers, change their clothes, and give them bottles. Each time we hold them for a feeding or for kangaroo time, they are still connected to wires for monitoring, so we have position the recliner chairs close to the isolette incubators when holding them.
I have to remind myself, it is day two of NICU 2 and we have learned so much! We are learning a new routine and being provided tremendous care from the wonderful staff of GHS’s Children’s Hospital NICU Teams. We are making new friends with other moms and dads, clinicians, and others inside the hospital who are so genuine and want to help. Sarah and I are Type A, so asking for help is so very hard. But we have learned to let our guard down and become thankful for the blessings around us.
We are also learning how to be present in the lives of George and Henry balanced with keeping a consistent home for Rosebud. She is a tough little girl, but she is having a hard time dealing with so many aspects of this change:
1) What is NICU
2) What are all the tubes and wires
3) When to touch the boys
4) Being important to mommy and daddy
5) Mommy and daddy gone to see the twins
6) Change in general
Rose learns through books, so Jennifer (Sarah’s sister) found us a great book called “Waiting For Baby: A Sibling Visits the NICU” by Jennifer Bracci. We read it to her tonight and it is helping us find a path for conversations with her. It also has a section in the back for parents, providing tips to help empower children who have siblings in the NICU.
We hope this helps!
Bobby and Sarah