Today, yes the blog is finally up to date, we had our last visit with Dr. G. before Kinley is born. We received some pretty good news at this visit, so that was very encouraging. For starters, based on the sonogram from today, Kinley is estimated to weigh 7 pounds and 5 ounces! Plus she still has 3 weeks to grow if all goes as planned and I do not have to deliver early. That is really good news since ECMO has a weight restriction. It looks like Kinley should have no problems just in case she does require ECMO after she is born. Secondly, Dr. G. was able to see and measure Kinley's right lung. There is a measurement of the ratio of a baby's head circumference to her lung mass and the doctors like it to be above 2. Kinley scored a 3-3.5 today, so that was really nice to hear. Finally, just to put our minds at ease a little, we were also informed that Children's Mercy Hospital has the capability of caring for 5 babies at a time on ECMO. Kevin and I were a little worried at first because we thought they could only care for 2 ECMO babies at a time.
As for the not so great news, my amnionic fluid has gone up somewhat in the past couple of weeks. Today they measured 24 cm. (Normal is less than 25.) Dr. G. did not seem too concerned with that value since it is still in the normal range, just on the high end. It is also somewhat expected for CDH babies to have higher amounts of amnionic fluid. Basically, this just means that there is a chance I could go into labor a little early. I am still having weekly visits with Dr. M. to monitor my progress as far as going into labor is concerned. So far it looks like Kinley will not be making her debut anytime soon, which is what is best for her.
Wednesday, May 21, 2008
Second Baby Shower
On Sunday, May 18th, my co-workers hosted a baby shower for me. This shower was just for the girls. We ate and played some fun games like guess the baby food and guess the dirty diaper, which involved guessing what melted candy bar was in the diaper to make it appear dirty. Lets not forget my favorite game...guess what length of yarn would fit around my belly. Everyone overestimated on the length of the yarn. I had a great time though. I already knew that I worked with a great group of people and it was nice to hang out away from the workplace for a night. I also received a bunch of great gifts at the shower. Once again, Kevin and I would like to thank everyone for their generosity and support of us during this time. We are so lucky to have the friends and family that we do.
Meeting with Neonatologist
Today, May 16th, we had a meeting with the Director of Neonatologists at St. Luke's. She gave us a rundown on what they will be doing for Kinley once she is born. A lot of the information we received, like Kinley being intubated right away and the number of people in the delivery room, we were aware of, but we were also given a good amount of new news. We learned that the doctors encourage dads to be up close with the baby, which is nice to hear that we will not have to stay in the background. She encouraged us to take as many pictures as we wanted, both during and after the delivery. We were also given the impression that Kinley will only remain at St. Luke's for a matter of hours. In one instance the doctor had had a baby transferred to Children's Mercy within one hour of being born. We already had confidence with St. Luke's staff and after this meeting we came away with even more. We both feel that Kinley will be in great hands.
Tuesday, May 20, 2008
Pre-Registration
Today, May 13th, Kathy had a phone call from St. Luke's on The Plaza to get her pre-registered for our future visit. This should greatly decrease the amount of paperwork we will need to complete upon our arrival for Kinley's birth.
Yea! We Are Normal Now.
Typically, most pregnant women begin weekly visits to their OBGYN in the last month of their pregnancy. Today, May 7th, would have been the beginning of our weekly visits. Yea, we have reached the point in our pregnancy where we are on the same schedule as everyone else.
Busy Day
April 23rd was a busy day with 2 doctors appointments. We saw Dr G., the perinatologist and Dr M., our regular OBGYN. Nothing new to report after the 2 appointments. Kinley is still doing well and growing as scheduled. Since we are mainly concerned with her lung development, we really do not expect to see many problems with her growth inside the womb since she doesn't need lungs to survive there. We just have to continue to hope that she is making enough lung tissue to sustain her after birth.
Speaking of Kinley's birth, we also had a tour of St Luke's on the Plaza today. Ashey, one of the nurses at St Luke's showed us where we should park when I am in labor and how to get to the labor and delivery area from the parking garage. She also showed us around the labor and delivery area as well as the NICU at St Luke's. We were able to see a few of the labor rooms and the recovery roms, but since I will be delivering in an operating room we were not able to see that. The labor and delivery area is not as new and nice as some of the newer hospitals near our house, but I was told by Ashley to remember that I am going to be at this hospital for the doctors and special equipment that they do have in order to provide the best care possible for Kinley, so that made me feel better.
On a brighter note, Kevin and I finally bought baby furniture for Kinley today. We placed the order for a crib, dresser, changing station, mirror, bookcase and glider with ottoman at Kids Rooms today. In order to take advantage of a sale that they had at Kids Rooms, the order will not actually be placed until May 1st, and from that date it could take anywhere between 6 to 12 weeks for the furniture to be delivered. I guess this is one good thing about Kinley having CDH, the furniture should still make it home before she does. We can't wait for Kinley to get to see her new furniture though. Hopefully she will like what we picked out for her.
Speaking of Kinley's birth, we also had a tour of St Luke's on the Plaza today. Ashey, one of the nurses at St Luke's showed us where we should park when I am in labor and how to get to the labor and delivery area from the parking garage. She also showed us around the labor and delivery area as well as the NICU at St Luke's. We were able to see a few of the labor rooms and the recovery roms, but since I will be delivering in an operating room we were not able to see that. The labor and delivery area is not as new and nice as some of the newer hospitals near our house, but I was told by Ashley to remember that I am going to be at this hospital for the doctors and special equipment that they do have in order to provide the best care possible for Kinley, so that made me feel better.
On a brighter note, Kevin and I finally bought baby furniture for Kinley today. We placed the order for a crib, dresser, changing station, mirror, bookcase and glider with ottoman at Kids Rooms today. In order to take advantage of a sale that they had at Kids Rooms, the order will not actually be placed until May 1st, and from that date it could take anywhere between 6 to 12 weeks for the furniture to be delivered. I guess this is one good thing about Kinley having CDH, the furniture should still make it home before she does. We can't wait for Kinley to get to see her new furniture though. Hopefully she will like what we picked out for her.
Baby Shower
On Saturday, April 12th, we had a great shower hosted by our friends Kim & Jess and Jenny & Josh. It was held at Jenny & Josh's house. Their house was decorated with all things baby in purple and pink colors and was so cute! Instead of the traditional all girls shower, we decided to have a couples shower, which was actually just a big party. There was plenty of great food and drinks for everyone. It was nice to be able to just hang out and relax with friends and family for a while. It was just what Kevin and I needed. We would like to thank everyone who came out to the shower, especially the out-of-towners. We also wanted to give a big thanks to Kim & Jess and Jenny & Josh for hosting the shower. We feel so lucky to have such great friends and family members. At the end of the night, when we were packing up our car with all the baby gifts, we could not help but to feel blessed by the number of friends and family members we have supporting us. We really appreciate it!
Sunday, May 18, 2008
Tour of Children's Mercy Hospital
On April 4th we received a tour of Children's Mercy Hospital. This is where Kinley will have her surgery and receive the majority of her care as a newborn.
Our visit started with a meeting between Kathy, myself, a Nurse Practitioner, a Neonatologist and a Surgeon. At this meeting we were given a verbal walk-thru on what to expect when Kinley arrives. Kathy and I learned a lot of new information. For starters, since Kinley will be intubated at birth there is a very good chance that we will never hear her cry when she is born. The delivery room will be very very full, with multiple nurses and doctors, most of them there to take care of Kinley. Before Kinley is transferred, by ambulance from St. Luke's to Children's Mercy, the transfer team will make sure that Kathy has a chance to see her. Once at Children's Mercy, Kinley's stats will be monitored, but if they are not looking good then she will be placed on ECMO (Extracorporeal Membrane Oxygenation). ECMO is a heart and lung bypass machine and it is considered to be a last option treatment. ECMO can only be done once, but it would allow Kinley to rest her heart and lungs. Surgery can be done while on ECMO, but the surgeons would prefer that she not be on ECMO because it requires blood thinners which would increase her chance of bleeding during the operation. For about the first month we will not be able to hold, pick up or feed Kinley due to her being on a ventilator. Kinley's entire visit to Children's Mercy will probably be between 2 and 3 months.
After our meeting, the Nurse Practitioner and Neonatologist gave us a tour of Children's Mercy. We started in the NICU, which stands for Neonatal Intensive Care Unit. Children's Mercy's "Level IV Intensive Care Nursery or NICU provides the most advanced technology in neonatal and surgical care available in the Midwest region, including ECMO and nitric oxide therapy." This is where all of the new born babies who need special care stay. One area in the NICU, where Kinley will be staying, is kept dark and quiet so the babies can rest more easily. This same area is right next door to the NICU operating room, where they will do surgery and put the babies on ECMO. Children's Mercy NICU has a separate operating room for the babies so they do not have to be moved too far for surgery. While we visited this portion of the NICU we met Sofia Rose Miller and her mother Jennifer. Sofie was born on March 10th with a CDH on the left side of her diaphragm. Jennifer was kind enough to give us the website of their blog for Sofie. Following Sofie's blog has given us a lot of information and helped us to prepare for our adventure with Kinley. If you would like to visit Sofie, her blog is at http://www.babymiller08.blogspot.com/. After leaving Sofie and her mom, so they could rest, we headed to the Ronald McDonald Room. This room is designed for parents who are visiting their babies, but still need a place to get away and relax. It includes a living room, kitchen, rooms with beds and bathrooms with showers.
Kathy and I were very impressed with the staff and facilities at Children's Mercy Hospital and feel better knowing that Kinley will be in good hands while she is there.
Our visit started with a meeting between Kathy, myself, a Nurse Practitioner, a Neonatologist and a Surgeon. At this meeting we were given a verbal walk-thru on what to expect when Kinley arrives. Kathy and I learned a lot of new information. For starters, since Kinley will be intubated at birth there is a very good chance that we will never hear her cry when she is born. The delivery room will be very very full, with multiple nurses and doctors, most of them there to take care of Kinley. Before Kinley is transferred, by ambulance from St. Luke's to Children's Mercy, the transfer team will make sure that Kathy has a chance to see her. Once at Children's Mercy, Kinley's stats will be monitored, but if they are not looking good then she will be placed on ECMO (Extracorporeal Membrane Oxygenation). ECMO is a heart and lung bypass machine and it is considered to be a last option treatment. ECMO can only be done once, but it would allow Kinley to rest her heart and lungs. Surgery can be done while on ECMO, but the surgeons would prefer that she not be on ECMO because it requires blood thinners which would increase her chance of bleeding during the operation. For about the first month we will not be able to hold, pick up or feed Kinley due to her being on a ventilator. Kinley's entire visit to Children's Mercy will probably be between 2 and 3 months.
After our meeting, the Nurse Practitioner and Neonatologist gave us a tour of Children's Mercy. We started in the NICU, which stands for Neonatal Intensive Care Unit. Children's Mercy's "Level IV Intensive Care Nursery or NICU provides the most advanced technology in neonatal and surgical care available in the Midwest region, including ECMO and nitric oxide therapy." This is where all of the new born babies who need special care stay. One area in the NICU, where Kinley will be staying, is kept dark and quiet so the babies can rest more easily. This same area is right next door to the NICU operating room, where they will do surgery and put the babies on ECMO. Children's Mercy NICU has a separate operating room for the babies so they do not have to be moved too far for surgery. While we visited this portion of the NICU we met Sofia Rose Miller and her mother Jennifer. Sofie was born on March 10th with a CDH on the left side of her diaphragm. Jennifer was kind enough to give us the website of their blog for Sofie. Following Sofie's blog has given us a lot of information and helped us to prepare for our adventure with Kinley. If you would like to visit Sofie, her blog is at http://www.babymiller08.blogspot.com/. After leaving Sofie and her mom, so they could rest, we headed to the Ronald McDonald Room. This room is designed for parents who are visiting their babies, but still need a place to get away and relax. It includes a living room, kitchen, rooms with beds and bathrooms with showers.
Kathy and I were very impressed with the staff and facilities at Children's Mercy Hospital and feel better knowing that Kinley will be in good hands while she is there.
Weekly Visits with OBGYN
On March 27th we had another appt with Dr. M where we gave him an update of yesterday's appt with the perinatologist. With Kinley having a CDH, a few things will change regarding our relationship with Dr. M. First, Dr. M. will no longer be able to deliver our baby. Since Kinley will require special ventilators, Kathy will have to deliver at St. Luke's on The Plaza. This does not mean that our appts with Dr. M will end. Actually we will be seeing him more often. The second change is that Dr. M. has requested that we move our visits with him to weekly, instead of monthly. Most expecting mothers do not begin their weekly visits until the last month of their pregnancy. During these weekly visits Kinley will have a bio-physical done. A bio-physical is a sonogram where the baby is checked/tested on four different areas. The first is overall movement where they are simply watching the baby for movement within the womb. The second check/test is the baby's heart rate to see if it is within normal parameters. The third part is checking to see if the baby is practicing breathing. To do this they watch the baby's diaphragm to make sure it is contracting. The fourth and final check is a measurement on the amniotic fluid surrounding the baby. The reason for this check is that CDH babies tend to have difficulty swallowing the amniotic fluid, due to their intestines being out of place, and this can lead to excess amniotic fluid around the baby which can lead to an early delivery. A measurement of 5 is considered a very low level of amniotic fluid while a measurement of 25 is considered very high. Each of the four areas checked receives a score of 0, 1 or 2 for a maximum of 8. An 8 out of 8 is what we will be shooting for each visit. Any score lower than 8 will require more analysis of the baby to determine if she is doing okay.
For any mothers expecting a baby with CDH: It helps to drink some juice before a bio-physical to ensure that your baby is active.
Since we did not begin our blog until very near Kinley's due date, we feel that it would be easiest to update everyone at once. So far, through May 16th, all of Kinley's bio-physicals have come back 8 out of 8 and Kathy has been averaging around a 19 on amniotic fluid levels.
For any mothers expecting a baby with CDH: It helps to drink some juice before a bio-physical to ensure that your baby is active.
Since we did not begin our blog until very near Kinley's due date, we feel that it would be easiest to update everyone at once. So far, through May 16th, all of Kinley's bio-physicals have come back 8 out of 8 and Kathy has been averaging around a 19 on amniotic fluid levels.
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