It is with great excitement that I am able to share some more details about our baby, and provide some more details about the experience that we are going through, including information about our details. Last Monday, at Stephanie’s 37 Week checkup everything appeared to be in normal working order from a growth and health standpoint. As mentioned earlier, we will not have any details regarding the bone marrow transplant until after the baby is born and a bunch of tests are performed. The plan is for Stephanie and the baby to stay in the hospital for 48 hours after the baby is born (normal standard protocol for hospital deliveries), and remain in Philadelphia for two weeks after delivery to get the results from the transplant testing.
On Monday, July 24, during Stephanie’e regular 38 week checkup, she was dilated to a 3. Generally speaking, Stephanie has been very quick in her deliveries (less than 2.5 hours), so everyone at CHOP was nervous about her delivering at the Ronald McDonald House, or in transit to the hospital (30 minutes away from where she is staying). The decision was made to have her come into the hospital on Tuesday July 25, in order to be induced with oxytocin (Pitocin) so that the researchers, immunologists, transplant specialists, etc could all make sure to be close and not have to send an ambulance out to find her on the streets of Philly.
Due to this decision, I received a call at the office around 11:30 am. Stephanie sagely called the front desk instead of trying to call me directly, so it was an interesting and chaotic visit right before lunch. Immediately, my office assistant Jolene called Southwest Airlines and booked me a flight at 4:40 to St. Louis, and then to Philadelphia. My brother, Dr. Reece Hayden was able to rearrange a few patients at the last minute in order to come to my office, and see everyone that was scheduled in the afternoon. As soon as I finished for lunch, I ran home, grabbed my stuff, and went to the airport. The flight to St. Louis was delayed by 3 hours, so I worked with one of the agents to get me to another city in order to arrive in Philly Monday night.
Tuesday morning, Stephanie and I took the courtesy shuttle from the Ronald McDonald House in Camden, New Jersey (that is where she has been staying, not the one in Philly) to CHOP. Around 10:20am, she was still dilated to a 3, and she began the Pitocin drip. Nearly 9 hours, 3 movies, and 2 episodes of The Office later, the OB/GYN on call came in and decided that breaking the water would help move things along. Boy did it ever. Around 7:00 pm the sac was punctured, and by 7:15 Stephanie could notice a significant difference in contractions. Between 7:30 and 7:45 I thought she might start cursing (not something she does), but Stephanie mastered her emotions and pain, and refrained from swearing at me (or the nurses) as the delivery time quickly came closer.
On July 25, 2017, at 8:22 pm, we welcomed our 4th child into the world.
It is interesting to note that The Ronald McDonald House celebrated “Christmas in July” with all of the kids that are staying there, so while we have been at the hospital all day, my kids were visiting with Santa Clause, and opening presents. Our present on this mid-summer Christmas? Lawrence Kolt Hayden. Born 20.5 inches long, and weighing 7 lbs 15 oz.
One of Stephanie’s biggest fears with delivering in the hospital would be that she would not be able to spend time with the baby. With our other children, they have all been delivered with a midwife, and we had a very clear and direct birthing plan. For example, the umbilical cord was never cut until it stopped pulsing, the baby was to immediately go to Stephanie’s chest, no immunizations, eye drops, etc. To be honest we were not sure what was going to happen, or if the doctors on staff would be willing to comply with our wishes since this is a special delivery unit for high risk pregnancies. We were warned that the baby would probably go to NICU for testing, and that most, if not all of the doctors and staff may not know what to do with a natural, vaginal delivery. We were cautioned not to get our hopes up by expecting what we considered a “normal” delivery process.
Around 8:20, the midwife in the hospital checked Stephanie to see how the baby was coming along. She removed her hand, and said that “we were close.” She removed her hands, and began preparing for the next step. A contraction started, and the OB/GYN that was helping get things ready shouted to get gloves on and catch the baby since it was already coming out. Texts and emergency calls went out from the nurses to all of the researchers and within about 10 minutes there were 17 additional people in the delivery room. Over 50cc of blood was collected from the umbilical cord that will be used for all of the diagnostic and research testing. This will include transplant expressions, immune activity, and the “normal” stuff that goes on with newborns.
We normally try to wait on the umbilical cord, but we had to make some compromises due to the extra testing that will be performed. It is much better to get it from the cord, than to try and fill 13 vials of blood with a traditional blood draw. You read that correctly, 13 vials of blood. 13… I can’t wait to see the results.
From a transplant standpoint, there are two main things we are looking for: 1.) CD40 ligand expression, and 2.) Blood chimerism. The CD40 ligand is the known genetic mutation that affects Hyper-IgM Syndrome. Since it is an X linked condition, and Kolt’s immune system developed from Stephanie’s “bad” X gene, we need to see if the transplant took, by evaluating this in both the baby, and in Stephanie, we can see what is and is not working from the immune system. On a side note, it is expected that Stephanie has between 45-50% ligan expression. 0% from her father (also diagnosed with Hyper IgM), and 45-50% from her mother (non carrier of Hyper IgM). My girls on the other hand could have anywhere from 45-100% CD40 expression. (0-50% from Stephanie depending on which X my girls received) and 50% from me (since I only have one X chromosome [the other is a Y]).
The second test, for blood chimerism, is to see how much of the blood circulating is blood that he produces, versus that which was produced by Stephanie. If he has 50% CD40 ligand expression with 90% circulating blood from Stephanie, it would mean that we are still unsure of the transplant’s effectiveness. Whereas if he has 10% CD40 ligand expression with 90% of circulating blood coming from him, the chances of a successful transplant are increased. Dr. Flake has indicated that anything over 0% is a good sign, and that as much as 10% could indicate a reversal in the immune condition.
Test results will start rolling in tomorrow, and will continue throughout the next two weeks. In October, Stephanie and Kolt will return to Philadelphia for a month for more testing to monitor the progress of the immune system and transplant.
Other eventful things from this evening’s delivery included the NICU pediatrician looking at me like I was crazy when I informed her that we did not wish to have his eyes washed with the newborn drops. Since Stephanie and I do not have a history of promiscuity, and seeing that Stephanie does not have Chlamydia or Gonorrhea, it just seems silly to bathe the eyes in antibiotics. Even though she reminded me that it was “standard of care” she did not push the issue. She was actually really nice about it. Maybe someone warned her that we are a gluten free, chiropractic loving, hippy family, and she knew we were going to stick to our position.
In fact, the medical staff and doctors really surprised me. They have been nothing short of awesome. Since we were warned by numerous people regarding the nature of the labor and delivery department at the hospital, I really thought we were going to be micro-managed the whole time. Instead, they were very respectful, and allowed Stephanie to get up and move around as she pleased. They brought in a yoga ball for her to bounce on, and basically let Stephanie dictate how the process was going to go. They left Kolt with Stephanie for at least 10 minutes before politely asking if they could take him to do his new born check up, and they never took him out of the room. Multiple nurses commented that they had never seen an infant look so healthy since being in the hospital unit, and that they were shocked that they did not have to wheel either mom or baby into a special room for additional procedures. They brought in a special crib into our room, and are letting Kolt stay at Stephanie’s side when she is not holding him. All things considered, this delivery has been fairly normal, and similar to our others from a standpoint of “natural deliveries.”
Tomorrow the kids will come up and meet their new brother. They are excited to meet him, and were bouncing off the walls (instead of going to bed) due to excitement.
We are still hopeful, and looking forward to the transplant results. We are extremely grateful for the outpouring of love and support that has been shown to us. Even the Houston Astros helped to welcome Kolt into the world by coming all the way to Philadelphia in order to honor him with a 5-0 victory over the Phillies tonight. For those of you that have never met Stephanie, she has done an awesome job, and is the best wife a guy could have. If you don’t believe me, guess who has tickets to the Astros vs. Phillies game for tomorrow night…
More updates to come as I know them… Until then, here are some more pictures.