Head over to Nadia's blog for baby updates. Click on either Nadia or Sofia's photos or videos for new stuff. We'll have lots more in the way of media by next week, and I might even try something a little more experimental that I'm sure several of you will completely freak out over in a negative way!
Pardon if I don't get everything right. I don't have my notes right here, but it's time to get some of this stuff down. I'll plug in more specific times when I have good reference handy.
After putting Sofia to bed Monday night I went to the basement to study for Tuesday morning's Geology exam. In between readings and notes I chatted in Gmail with Jeff Harding, and pleaded with him to get me a promised video of Sofia and I dancing at the Humbert wedding reception. In the middle of studying and chatting, I went upstairs to check on Jessica. She said that she was having contractions around ten minutes apart.
We weren't in labor mode just yet, though, because there had been a false alarm the previous week. The slip of paper we'd been given by Vanderbilt said that we were supposed to call when contractions were ten minutes apart, so we did. Jessica was told to relax, drink some water, take a bath, and sleep until the contractions got down to five minutes apart or became painful to the point that she had trouble talking.
One of us called Anissa and let her know that this was maybe the real deal, and to be ready to come over and handle Sofia in our absence. Jessica was feeling like it was the real deal. We called Anissa back and asked her to head on over, which she agreed was a good idea.
Jessica drank water. Then she took a shower. Then she couldn't walk or talk properly. Jessica came out of the bedroom with clean jammies on, telling me to get Anissa on the phone to make sure she knew the situation had turned urgent. Anissa was already in the car and closing in. For some stupid reason, I didn't understand that this was the time to put the bags in the car. Instead, I updated Facebook to let people know that it was really going down.
Why? Because I'm a jackass, obviously. Have we met?
Anissa arrives, and Jessica is pissed that I'm not in the car ready to roll. Since our garage is so tight that a person can't get in the passenger seat without pulling the car out, Jessica took it upon herself to pull the car out into the driveway while I grabbed all of our bags. This was a horrible idea that turned out okay.I accidentally loaded Sofia's overnight bag into the car, so I had to take that back in, which cost us time, and there was something in my van that I needed, which cost even more time.
By the time we left the house, Jessica's contractions were around three minutes apart. I drove entirely too fast to Vanderbilt while Jessica writhed, dropped f-bombs, and acted vaginally constipated in the passenger seat. Turns out that it was the opposite. Jessica had started the drive praying that we made it to the hospital in time for painkillers, which can't be administered after a certain point. By the time we hit the bypass, Jessica was praying that we made it to the hospital before the baby arrived.
I drove entirely too fast down 21st Avenue towards Vanderbilt Hospital, putting on Jessica's hazard lights as an extra warning to anyone who might see us speeding toward them. It occurred to me that I might cause us to be pulled over, and decided that I would just have to deal with the police when we got to the hospital. Then I remembered that police often get so stressed out during a chase that the beat the crap out of the person they chased. Luckily, we were heading to a hospital, so any injuries the police might give me would have been dealt with immediately.
We pulled up to the emergency entrance, and I helped Jessica to the security checkpoint while talking with the guard and sorting out what to do with the car. The valet staff wasn't at the valet desk yet, so I gave Jessica's keys to the guard, who said that he would get the car parked and also that he would hold the valet ticket until I could return. After a couple of moments, the valet arrived and took the car keys from the guard, who then handed me the valet ticket just in time for me to keep Jessica from falling out of the wheelchair that the medical staff had placed her in. When Jessica told me that she was going to pass out, I became impatient with the speed of the staff, and let them know.
Across from where Jessica was sitting, there was a young man who was obviously amused at the situation. He ceased being amused when Jessica said, "SHEEEE'S COMIIIIIIIIIIIIIING!"
For a moment, I thought the same thing that the staff probably did, which was thatJessica was experiencing normal drugless labor pains and over-reacting out of delirium and panic. Then I remembered who I was dealing with. Jessica can be very tough. Jessica and I established later that her "SHEEEE'S COMIIIIIIIIIIIIIING" exclamation was the best she could do to let us know that her water had broken in the elevator, and that Nadia had dropped quite a bit, to the point that Jessica felt like she was sitting on the baby.
Let's just pause for a moment and contemplate what that must feel like. I am certain that "she's coming" is one more syllable than what I would have been capable of in the same circumstances.
After the longest elevator ride never recorded, the staff got Jessica in a delivery room and tried, very clumsily, to get Jessica into the bed. The first problem was that the staff couldn't get the wheelchair to work properly. The second problem was that Jessica's contractions were happening so frequently that it was hard to get her to stand up, because the contractions were freezing her in place.
After Jessica was in the bed, I dampened some paper towels to rub across her forehead while we dealt with the long, painful labor ahead of us. The doctor came in, introduced herself, and poked around in Jessica's baby ejector for a few seconds before telling us that the head was already visible, and that a couple of pushes should do it. The doctor asked me to help hold one of Jessica's legs back while Jessica pushed through the next contraction, but I couldn't because Jessica had a death grip on my hand.
I didn't really get to wipe Jessica's forehead before Nadia came out. Jessica was in her bed for less than five minutes before delivering. She was batshit crazy with pain, and in the audio recording I have of the event, it sounds like Jessica and Nadia are having a screaming contest.I immediately let the entire delivery team know to be looking for Downs Syndrome complications since they hadn't had time to pull all of our info up. This was a conversation I repeated several times over the next two days, just to be safe.
Since Jessica got to tell Sofia her name, I asked to let Nadia know hers. She was a little out of it and didn't seem to have an opinion either way.
Once Jessica calmed down a bit and the doctors worked on stitching her up, we soaked in how wild the whole experience was, how quickly it had gone, and how very different it had been from Sofia's arrival. I asked Jessica if she regretted complaining about not having any tumultuous stories from Sofia's birth. Jessica wasn't in a joking mood just yet.
Nadia was released from NICU late on Saturday. Yeah! I’ll recap the medical stuff first and then just write for awhile. Feel free to abandon the post whenever you’ve gotten all the info you desire.
Nadia’s bilirubin levels were back to normal and she was taken off photo-light therapy on Friday (jaundice). Her IV levels for dehydration and to help flush out the abnormalities in her blood were lowered on Friday and taken off completely on Saturday. Even with her IV levels coming down, she maintained her weight of 5 pounds 12 ounces from Thursday to Friday evenings (a great sign). She had been admitted to NICU for possible Sepsis (ruled-out) and dehydration with Down syndrome and transient myeloproliferative disorder.
We found out reading her discharge summary that Nadia suffered hypothermia in the newborn nursery which is one of the things that flagged them to rule-out Sepsis (she was treated with 2 days of Ampicillin). Her CBC (blood) had blasts of 20% so she had work up started for myelodysplastic syndrome. She was treated for hyperkalemia and elevated uric- acid, seen by Heme-Onc. The doctors stuck with not feeling like the bone marrow aspirate or biopsy are unnecessary at this time. “While transient leukemia does often resolve within 3-6 months of diagnosis, approximately 20-30% of these patients can develop non-transient leukemia, most often within 3-4 years of initial diagnosis”.. They will continue to monitor her blood closely over the following years; she already has a follow up appointment with Hematology scheduled for this Friday, April 1st. Her final ECHO showed that she still has a small hole in her heart (this is a hole normal in all newborns that closes shortly after birth). Nadia’s ahs not closed completely and will require further Cardiology appointments to monitor to see if it will continue to close on its own or if it will require greater action. The hole is so small that surgery is not required, it would be closed medicinally. The hole is also so small that the Doctors do not feel that it is zapping any energy or causing her any problems at the moment.
The night nurse, Paige, talked me through the early steps of discharge Friday night while Mom and Dad waited for me down in the food court. I was exhausted by this point in the day, having spent the previous 12 plus hours wandering around the hospital pumping every three hours and meeting with various specialists and departments: social worker, Down syndrome clinic, Cardiology, Pediatrician, case worker, etc. Nadia and I had some success nursing this day, but overall she still preferred the bottle and would drink more before falling asleep so this is the version of feeding we used. I got emotional as I was saying goodbye to Paige that night. I was so overcome with gratitude that my daughter was going to get to come home the next day. I was conflicted with being so very excited to have her at home and start our family routine yet my heart ached for all the babies I’d seen in NICU that weren’t at the point were they could go home. Tears welled up in my eyes as I thought about Baby Bella, who passed away at Vanderbilt Children’s Hospital last month, after a nine month battle. Bella has never been far from James or my thoughts throughout our entire pregnancy and definitely since our post delivery time at the hospital. I never met Bella but she touched my heart from the very start of her story, she found a permanent place in my nightly prayers, and she inspired me with her fight. My Nadia doesn’t have the same battle ahead of her that little Bella faced; hers is a different situation completely with a much different outlook of success from her doctors. This night as I thought of her, my eyes welled with tears to realize once again that my daughter was given the chance that Bella never really was. I was selfishly thankful and overwhelmed with the guilt I felt because of that.
Saturday, James and I arrived at the hospital, all dressed up and ready to bring our baby home. It takes a long time to discharge…The newborn nursery did not complete her hearing screen as there were so many other tests being completed, so our NICU nurse took her over to have the test completed on Saturday before she was discharged. Unfortunately, the machine was broken and the hearing test was not able to be completed. We will have to take her back to the hospital to have it completed as an outpatient. She will have another hearing screen at 6 months due to ototoxic antibiotics used during her NICU stay (we were told at her first pediatric appointment on Monday that this antibiotic can cause deafness, something not shared at the time the antibiotic was administered).
Finally, around 3:30, our nurse came in and began to discuss the discharge with us. We had a really great talk with Candi and I feel that we truly bonded with this remarkable lady. We thanked her for the job she does that has to be incredibly difficult; it takes a very special person to have the strength and dedication to work around sick babies. She shared with us her personal story of loss that led her to her current profession and how it strengthened her faith in God while challenging her marriage until both she and her husband had dealt in their own ways. Shortly after their healing together began (several years after the loss) they were blessed with another child, the one who completed their family. Her story was very touching, sincere, and heartfelt. This talk made our discharge take much longer but I feel very lucky to have had such a personal story shared with us.
We brought Nadia home and finally got to introduce her to her big sister, Sofia. Sofia was only excited to see Mommy for a second before she spotted Nadia in the carseat. From that moment on, it was all about the “Boppy” (baby as it sounds when Sofia says it). It was very sweet how Sofia knew to be gentle when she touched tiny Nadia. She even bent down and gave her the softest kiss on the top of the head. Our family is all together, finally home, moving forward in building our life together as a foursome. James and I feel so blessed that we have our girls. Sofia has managed to thrive in our nearly week-long absence; she actually started potty-training herself (with some help from Nana Sally and Aunt Anissa) and successfully used the potty at Nana Sally’s house and then at home. Her vocabulary expanded in our time apart, as well. There is no stopping her progression into a toddler.
Thank you to all who have shared the interest in our family and Nadia’s condition. She is improving every day and just having her home is a huge improvement for my mental condition. I will continue to add more details as they come, but feel confidence in the fact that the Peaches are blessed and Nadia is loved.
I wanted to take the time to update anyone interested in Nadia Hope Peach’s first couple days of life. I will offer the forewarning that this could get a bit lengthy and much of the medical terminology is beyond me but I will explain it as best as I understand it ( and spell it as it phonetically). I will also warn you that I am not going to review this entry once I am done and apologize for any grammatical and typing errors.
Nadia was in a huge hurry once she decided to come. That is a story I will save for another entry but it does factor into some of the discoveries the doctor’s have made. James and I made it to Vanderbilt ER and had a baby on the 4th floor less than 15 minutes later. Because it was such a rush, I went through the natural birth without any monitoring or an IV line. The IV line becomes important as I am a carrier for the Strep B virus (a common virus that all expectant mothers are test for as they can prevent us from passing it onto the child by administering antibiotics to us during the delivery if needed). Since it was such a rush job, I did pass the virus to Nadia, which they confirmed by a blood test early in her first day that showed an elevated white blood cell. They started her a central line in her left hand so they could give her the antibiotic over the next 48 hours (twice a day, once a slow process that takes about an hour, and the second of each day just a quick push through the line). We were still comfortable and pleased, although we were starting to get concerned with the amount of time we were getting to spend with Nadia and the negative effect it was having on our ability to develop breast feeding patterns. Nursing is often more difficult for children with Down syndrome due to their enlarged tongue and lack of general muscle tone, even in the mouth.
Nadia had her first follow up Echo Cardio exam that came back good. She showed 2 small holes in her heart that are normally present but close shortly after birth. They scheduled another exam for Thursday to check the status of those holes. At the time I write this, I do not have those results. Both of these holes are small and could be closed medicinally, if needed. Neither are life threatening or overly-scary to us. They are small potatoes compared to the potential heart defects a child with Down syndrome is at risk for. Great news.
In the early afternoon, we were informed that there were some abnormalities noted on her blood screen beyond just the elevated white cell count and that a Pathologist would be taking a look at the results. The abnormalities are called “blasts” and are immature blood cells that are floating around and could cause some problems. This was the first conversation that I heard the word “Leukemia”. We met later that day with a hematologist who told us that Nadia was scheduled to be transferred to the NICU the next morning where they would fully sedate her and complete a bone marrow draw. The reason they wanted to do this is because there is a phenomenon with Down syndrome that, like so much surrounding the syndrome is not yet medically understood, is known as Transient Leukemia. As explained, this is when these blasts appear in the blood stream on their own and not as an overflow from bone marrow. It happens sometimes in Down syndrome where these immature blood cells will break apart and magically go away within a few months, even though the pathology will look just like regular Leukemia. The bone marrow drawn from Nadia would be analyzed to see if the percent saturation of blasts present were equivalent to that in the blood stream; if they were significantly higher, the odds would lean toward Leukemia and not the transient copycat. Pretty scary conversation. She also informed us that they would like to draw more blood to run further testing.
Later that first night, she came back to inform us that her department head recommended holding off on the marrow draw. His reasoning was this: will it change the monitoring we do of the baby’s blood . No. Then why put her through that at 24 hours old when the same information would present itself further down the line simply by analyzing the data they could from the blood they would already be drawing regularly. We agreed and were relieved. She promised us that we would get to spend more time with Nadia the next day and that they would be testing, poking, and prodding her far less hopefully allow us more alert time to work on nursing. Nadia did not eat her first day, whenever I would put her to the breast she would instantly fall asleep. We bonded over that time but did not make any successful strides in breast feeding success.
Day 2: We were told early on that she need some fluids to prevent dehydration. A small amount (50 ccs) would be run through her central line. Her electrolytes were high and needed to be diluted with this additional fluid. More time spent being stimulated in the nursery and away from us, but for necessary purposes. The central line in her hand got pulled out in the nursery and they put a new one in her right foot. My parents came in from Iowa and spent the morning with me, they got to meet Nadia for the first time and held her in between the busy day of testing.
The hematologist and her supervisor came in to meet with us and answer questions. We met a few times with a lactation consultant and Nadia and I as a team showing signs of improvement, although not achieving truly successful sucking yet. Limited nutrition was getting to Nadia, a growing concern for all parties involved. At some point in the afternoon, they needed to draw more blood for the hematologists as the first samples did something that made them unusable. This draw was done by some team members at NICU and the line was so good that they kept it in as a secondary central line outlet (now Nadia has one on her foot and one on her hand). After the shift change early that night, the Nursery RN came in to take Nadia for her final vitals check of the day and to administer the final daily dose of antibiotics. She promised us that no one would be sticking Nadia anymore that night. She came back less than a hour later and apologized that she’s been made a liar and told us that the Attendee, Dr. Rawls, called and said that Nadia’s potassium level was very high and that another sample had to be drawn immediately and another fluid IV needed to be started. High levels of potassium can be dangerous and cause heart murmurs or worse. By this point, I was pumping like a mad women trying to encourage my milk supply to come in and still wanting to pursue nursing as the only sustenance provider for the first 4 weeks of life. I was saving any milk I could get, but did not want the false nipple of a bottle introduced until Nadia and I had some time to work on it naturally. I made myself wake up every couple of hours last night to either pump or attempt to nurse with Nadia once she was brought back into the room. I unhappily admit that the only thing I was successful in was depriving myself of even more sleep.
Day 3 (today): We awoke and attempted to nurse before the nursery RN came in to take Nadia for her morning routine of Doctor checkup, exam, etc. I pumped and then tried to sleep which is very difficult in the mornings at the hospital as everyone is on rounds: my doctors, all of Nadia’s team members, nursing shift changes, etc. Dr. Rawls came in to tell us that Nadia’s potassium was a bit better but still concerning and he wanted to start her on an IV, instead of just the random bags of fluid. He also said that her billy Rueben level was elevated and that she would need photo light therapy. He said he that it appeared to him that her blood levels being such a mess could possibly mean that the blasts were breaking down (a great thing) and dispersing their various components into the blood stream, making the levels all over the place. He was recommending a transfer to the Children’s Hospital NICU where the nurses would have more time to spend on her and her specific needs. I would be discharged today and would only have my room until 5:00 pm This was worrisome to me as I didn’t want to be separated from Nadia especially if I we were still going to be allowed work on her nutritional needs. Nadia never came back from the nursery that morning, she got her transfer to NICU. I finally broke down a bit as they wheeled her in on the way by so I could give her a kiss goodbye. They would not let me walk that far so I was going to be spending at least the afternoon without being able to check on my baby. That hurt a bit, partnered with my exhaustion, I let my fears pour out my eyes for several minutes.
James, who had left early in the morning to spend some time with Sofia and get some school work done, came back with my folks and Sofia around 5:00 to help us move to the Children’s Hospital. It was wonderful to see Sof, I’d missed her immensely. They had come through with a family room for us for the evening in NICU so James and I could stay at the hospital at least one more night. Sofia would not be allowed in NICU so she still has not met her baby sister. James and I went in to see Nadia, talk to her, touch her. She’s under the lights so we couldn’t hold her, but it did my heart good to see her and let her know that I was still here. I was allowed to feed her at her 8 pm feeding and James did the 11pm. They are using my pumped milk but not allowing me to nurse her directly, the reasoning being that they want to monitor the exact amounts she is taking in and there is no way to do that through the breast. Hopefully she will take it later, but for now she is being bottle-fed, given pacifiers, and actually eating some much needed calories. She has gained some weight today, which is great. Her blood levels have improved greatly and the IV will continue for at least another 24 hours. They are stopping the antibiotics after tonight’s dosage. She will stay under the Billy lights for at least another day. The blast concentration in her blood stream have dropped some today (YEAH!!!) a very promising progression. It is far too early to completely rule out Leukemia, but lowered saturation levels are the best we can ask for.
I look forward to tomorrow as I do feel like we’ve turned a corner. We are in the right spot with people who know what they are doing. We have a full term baby in NICU who weighs well over 5 pounds; our rainbow is really bright compared to the children around and families around us, we definitely see that and appreciate it and are encouraged by that.