4 weeks of Johnny

Johnny,

Today you are four weeks old. I cannot believe it and honestly, I think I am still a little shell shocked from your very fast and somewhat unexpected delivery and you already being with us. There were times when Mommy was pregnant with you that time seemed to slow down with all of the stress of worrying about you and now time is going much to quickly!

In the past four weeks we have gone to a lot of doctor appointments, spent an extra night at the hospital, learned more about ourselves as a family of five, and celebrated Thanksgiving! Your doctor appointments are going well, but it is a lot of wait and see. Wait and see if you are gaining weight. Wait and see if your holes in your heart heal. Wait and see about your hearing. Wait and see about your nursing. You are teaching Mommy and Daddy a lot about patience. Mommy thought she was organized before, but you have added a new level of organization.

You are a very, very good baby. You are very relaxed and rarely need much. You are often content to lay on the couch or in someones arms and just chill. Sometimes you will take a pacifier or your thumb, but you don't need it to relax or go to sleep. You like being swaddled, but don't have to be. You will wake up to eat and go right back to sleep without any effort. The only frustration we can site is with breastfeeding which we were fully prepared for.

You sleep most of the day and will eat 8-10 times a day. You have given Mommy several nights of 4 hour stretches of sleep for which she is very grateful for. You have a few periods of wakefulness in which you will calmly look around taking it all in. Your hair is still very dark and looks a little coarser than Mac and Keeg's hair. Your eyes seem to be getting bluer but it is way to early to tell. Everyone talks about how sweet and small you are. To Mommy, you are already getting bigger as your limbs have started stretching out even more. I agree that you are very sweet though. People also comment on how big your feet are and how scrawny your legs are.

Johnny, thank you for blessing our family. You were definitely much anticipated and well worth the anticipation, hope, and prayers. We love you and look forward to a lot more time with you.

Love,
Mommy and Daddy

 Exactly 4 weeks old!!!

Mac wore this outfit on her first Thanksgiving...it fit her better! 

Johnny and Mommy on Johnny's due date

The girls love their baby brother!

Johnny is Teaching Us!

Some "lessons" that I have learned from Johnny already...or maybe better termed as analogies for his life...

First, I am so thankful for the medical team we have surrounding us and supporting us through all of this. We already had what I consider to be the top Ob/Gyn and Pediatricians in place and they continued to strengthen me by always saying the right things at the right times. I never felt that they faltered for a moment in our care. Further, they have been able to direct us to more professionals that really helped us on our journey. Dr. TamTam absolutely made the right call in his concern about our low fluid levels. I still get choked up thinking about how lucky we were that we scheduled that appointment for that day...otherwise it could have been another day or two before we knew how bad the fluid levels were dropped and it scares me to think what that might have meant for Johnny. I want to continue to work hard to surround ourselves with medical professionals that can give good insight into how to best help our children.

Second, while medical professionals are helpful, sometimes Johnny is going to shock them and do things his way. During his delivery the nurse assured me that it would be at least two more hours before he was born and that was only if they further augmented my delivery and upped my pitocin. Johnny decided to cut that time down to 15 minutes. I so hope this is an analogy for his life- That doctors and professionals are going to say that things are going to take a certain amount of time and instead, Johnny does things in his own time and on his own schedule. This does not necessarily mean that I want him to do everything faster than what science says he should...I just want him to grow and develop at his own pace whether that be faster, slower, or some mixture of both. And I want us to help him determine what that development looks like rather than only listening to the experts. The labor and delivery really put so much into perspective to me. Yes, we need to look at the data given, but we need to observe the human being as well. In labor and delivery my nurse relied greatly on the data and thus underestimated how I was doing and when Johnny was coming. In contrast, during our overnight NICU stay, the opposite was true. Several times our nurse (who was wonderful and very kind to Johnny and myself) was alerted to issues with Johnny's breathing and pulse oxygen levels. After several of these alerts, she stopped watching the monitors and began to assess Johnny the old fashioned way...through observation. She determined that Johnny was, in fact, doing better than the machines were indicating. How telling of how we should look at Johnny for his life...that testing is good and beneficial, but we cannot forget to look at him and see what is actually going on. And to be honest it is going to take me trusting myself a bit more just like in labor when I needed to trust myself and my body a bit more. That I know what he needs and I can help make sure he is getting what he needs. If I can trust myself and work with the professionals, then I have faith that he will surprise us all.

Third, Johnny excels with a little bit of extra attention. Our stay in the NICU for his jaundice was textbook perfect. He ate well, worked stuff out of his system well, and relaxed under those lights like they needed him too. He charmed the nurses there to help take care of him and his levels dropped off exactly as they hoped for. There will be many times in his life that he needs and receives extra attention...and as long as we continue to give it to him, he should do great. 

Fourth, sometimes all you can do is "wait and see". I find it highly ironic that we did the initial blood screening because we told ourselves that we would want to know. But knowing that our baby has Down syndrome tells us so little about who he is or what he needs. Would I do the testing again? In an instant. However, I would tell others, and I need to remind myself, that all you can know from the test is that your baby has an extra chromosome. We have had to wait and see with his jaundice levels, we have to wait and see with his growth as he is still not up to birth weight, we have to still wait and see with his heart, and we have to wait and see how his hearing is. Additionally, we will have to wait and see for a number of years as to how he develops physically and cognitively. There is such a large spectrum of where he could end up and there was/is no amount of preparation or knowledge given ahead of time that will tell us that. 

We love this Baby boy and we are so thankful that we have been open to his lessons in our life.

Raptor's Birth Story

I cannot believe it has been two weeks since this whole process got going...

The weekend before Halloween I felt...off...like something wasn't right. I didn't want to do much and was having a lot more contractions, but nothing was consistent or timeable. I did a lot of sitting around and relaxing, but we also took a few family walks knowing that it would be good for me and the baby to get some fresh air and exercise. On Monday I had a big surge of energy and took the girls on a walk to the park with Crystal and her boys and spent a lot of the rest of the day straightening up the house and working on laundry. I did take some time to read and cuddle with the girls. Many friends talk about holding their youngest for the last time before having a new baby because it is the last time they look and feel "small". As Keegan sat on my lap, I stroked her hair and ran my fingers over her hands and feet wondering if I would soon feel that way about her. 

On Tuesday I had an appointment with my Maternal Fetal Specialist so I dropped the girls off at Crystal's house, fully expecting to be back to pick them up in an hour or two. At the specialist, the ultrasound tech began scanning me and immediately asked if I had been leaking fluid. I told her that I was unsure, but I knew I hadn't had a full breakage of water. She continued on with measuring the baby's anatomy and I was pleased to see that Raptor had gained a bit of weight over the weekend. I had eaten a lot of cake and treats over the weekend and knew he or she "needed" that extra layer of fat!!! The ultrasound tech began to measure the amount of fluid in the four quadrants and I was silent as I saw that the numbers were not adding up very quickly. At my appointment the previous Thursday my fluid levels had been 13...these numbers were barely measuring up to 5. I knew from prior talks with Dr. TamTam (our specialist) that they want the fluid number to be between 5 and 20. The tech measured me again to confirm the number and once again asked if I had been leaking any fluid. I told her again, no, and told her that the number she was getting didn't look so good. The techs are not supposed to give any information out so I knew she was trying to be as delicate as possible, but she did confirm that the number was surprisingly low. I wondered what our next course of action would be as I waited for Dr. TamTam to come in. I knew that this could be a possibility, I knew that at any point in time they would pull Raptor...after all wasn't this why I was doing all of these extra appointments? Wasn't this something I was thankful for? Still I was a little shocked and worried that it was developing this way. 

When Dr. TamTam came in the room he did a quick scan and confirmed that my fluid levels were indeed rather low. He also looked for maturation of the lungs and took a good look at the heart. When he was done, we talked about two options that he would discuss with Dr. Norton. He would either send me downstairs to her office to be monitored in office on the NST machine or Dr. Norton could choose to admit me to the hospital for i.v. fluids and monitoring there. He said that the baby looked good and there was no indication that the baby was in distress, but he didn't like how low those fluid levels were. He called Dr. Norton and they decided together that considering I was a day away from being at term anyways it would just be best to admit me to the hospital and we would see where things went from there.

I was shaking as I left the office to collect a few things from home. I quickly called Crystal and Jennifer to get things settled with the girls as they had both confirmed that weekend that they were there to do whatever I needed in the event that I went into labor. I grabbed lunch (Chick-Fil-A of course) and tried to calm my nerves as I grabbed a few things I knew I might need overnight. I laughed at Matt on the phone as he wanted to watch the girls overnight, not understanding that he needed to be at the hospital with me in the event that we were having a baby! I pulled into the hospital parking lot thinking very strongly that I would not be returning back home without Baby Raptor in my arms! I was excited and nervous and scared all at the same time. I checked into the hospital where they started an iv to push fluids to me and thus to the baby as well. Dr. Norton came in to check on me and see where we were. I was delighted to find out that my body was moving towards labor anyways as I was 3 cm dilated. It was encouraging to know that, in the event of an induction, my body was priming itself to move that way as it was. Dr. Norton tried to assess whether or not I was ok with having a baby on Halloween. I exclaimed that I was excited to have this baby and had thought Halloween might be a good day from the start. In fact, I had pestered a friend for a Halloween outfit we had lent her two years prior, just in case Raptor was with us for the big day. I was moved to antepartum and tried to settle in for a day and night of relaxing. I got teary wishing that I had hugged the girls a little bit closer when I dropped them off. I hadn't really thought that I may not be seeing them until the next day or later and had only made it a quick goodbye. I knew they were being well taken care of by friends and tried to push that out of my mind to refocus on Raptor. After all, I was the only one that could care for Raptor at that moment and he or she needed me to rest, relax, and get lots of fluids and food. While in antepartum they monitored me which I was thankful for to hear the strong galloping of Raptor's heart. It was frustrating to get comfortable as every time I moved, they would come in to readjust the monitors. I did not get much sleep that night, but tried to rest as much as I could. I was happy and a bit jealous of Matt's snoring coming from the other side of the hospital room. Early Halloween morning came and an ultrasound tech came to measure my fluid levels again. I had been on an i.v. for 15 hours by then and had drank a ton of water leading up to my midnight cut off of fluids and food. The tech left and shortly after the nurses came in to move me over to labor and delivery...Dr. Norton made the call that it was definitely the day to meet Raptor. The overnight i.v. had not increased my fluid level at all and it was continuing to drop. 

In labor and delivery I met my nurse who was actually the mom of two of my former students. Throughout the morning I continued being monitored as Dr. Norton had several operations that needed to be done that morning and Raptor was doing fine. Just before noon my favorite nurse, Charissa came in to check on me and assured me that she was around for the day to help out as needed. I was so glad to see her smiling face and felt at ease that she would probably be a big part of our day again. At 12:30 Dr. Norton came in to break my water (which wasn't much) and had me started on pitocin. I hate pitocin and apparently so did Raptor. They had to cut off the i.v. of pit after about half an hour because Raptor was not tolerating it very well. My body took that as a jump start though and continued to labor on. This labor was challenging though...with Keegan my mom was able to talk me through my contractions as she watched what was happening on the monitor. It was nice to have someone warn me of a "tricky" contraction that tapered off and restarted or of a longer one. While we are unsure of why, the monitors were not picking up my contractions very well and were not picking up the baby's heart rate well either. They eventually put an internal monitor on Raptor's head to try and get a better feel for what baby was doing and let me tell you...that was odd and a bit uncomfortable. We labored on while they flipped me on my side, on my other side, and at one point on all fours (covered up thank goodness) to try and get better readings on what was going on. When I wasn't contracting we were able to relax a bit, when I was I liked it very quiet except for my mom reminding me to breath and relax and Matt rubbing the small of my back with vigor! We even got a good shot of oxygen at different parts during the day and tried to avoid the smell of the tar being laid on the roof as it was making me extremely nauseous. I recall telling my sister that we did not need a picture of me laboring on all fours...she disagreed, but complied with my wishes. 

Around 3 I began to feel more and more pressure and kept calling for the nurse to check me. She kept telling me that I was only 7 cm and it was going to be awhile before we had the baby. She said that if she restarted the pitocin it was going to be at least two hours and it would probably be longer as they couldn't keep me on it for that long. I was discouraged by the thought of it taking longer than my body was feeling it would take...my body was telling me it would be over very, very soon. They were still having troubles monitoring my contractions and I suppose that, looking at the data alone, it would appear that I was going to take awhile. I have never had a consistent contraction pattern without the help of pitocin and she wasn't able to read any of my contractions that I assured her I was having. Around 3:15 I decided I wanted to rest and asked for the anesthesiologist to come and give me an epidural. I was really happy with this decision as I expected to be in labor for awhile longer and wanted to rest and relax. In my mind, things were taking a long time and basically all hell broke loose in my body. I completely lost focus when I asked for the epidural and allowed my contractions to really get away from me. I begged my mom and Matt to get me help and to see how much longer the epidural was going to be. I tried to explain that I was feeling a lot, a lot, a lot more pressure and movement towards delivery to my nurse and she still didn't believe me. At one point I remember furrowing my brow and wanting to ask "Are you kidding me?". I sincerely thought in my head that she was still telling me it would be awhile because she was waiting for Dr. Norton to get here. I thought that she would soon arrive and they would say "Oh good, we were just joking, let's push this baby out." I knew my body was moving towards delivery and she kept assuring me that it was not. She did call Dr. Norton however to tell her I was getting an epidural and that she might want to make her way over as sometimes the epidural process causes the baby to scoot on out. Moments after the nurse left, I got pretty vocal and was demanding help. I feel bad for Matt, my mom, and my sister because I knew they believed me, but there was nothing they could do for me. I literally wanted to climb out of the bed and escape somewhere...I wasn't sure where, but I felt (and from what I understand looked) like a trapped animal who wanted to get out. I was getting very upset that the nurse wasn't believing me and lacked control as her telling me one thing went directly against what my body was experiencing. As I grappled with myself I felt all sorts of odd things occurring and realized it really was time and I wasn't crazy...the baby was literally coming out. My mom told my sister to go get Charissa and any other nurse because we needed help right away. As my sister left the room she said the nurses could hear me begging for help and came rushing in. Charissa (just like with Keegan) worked to get me back under control as I tried to explain to her that I couldn't help what was happening, my body was pushing and the baby was definitely coming. At some point in t his process, the anaesthesiologist poked her head in to announce she was there with my epidural. I remember calling out "Wrong doctor" as I was frustrated that she had finally made her appearance and that she was not the doctor I wanted to see. I really wanted to throw something at her...but was unable to find something appropriately sized. Once they realized the baby was almost out anyways, they assured me that we were good to go and Charissa and the other nurses delivered my baby with two easy little pushes. Matt announced that we had a little boy at 3:36! I began to bawl as all of the emotions of the pregnancy and the rush of the past twenty minutes left at the same time. I felt no fear, only relief that he was finally here. I thought he was simply beautiful and asked Charissa how he looked as she had been following our journey through our diagnosis. She confirmed that he had some characteristics, but I was really good with that...I just wanted to know.

We were very lucky that he was healthy. Dr. Norton rushed in a few minutes after he was born and none of the specialists she wanted there were able to make it. He hardly cried as he made his way into the world and I made sure the nurses knew to call him Johnny. They weighed the little tyke at 6 pounds 14 ounces and I was able to hold and snuggle him before they took him up to the NICU to be checked out by the neonatologist. 

The neonatoligst said he looked great and had some of the best muscle tone he had seen for a baby with T21. He nursed well, but would frequently get tired as is customary with early babies and with T21. We welcomed him with lots of friends and family coming to visit and the girls loved coming up in their scrubs to visit the hospital. 

After we brought him home we had to return to the hospital on Saturday and Sunday to check his jaundice levels. On Monday at the pediatricians office he checked out well, but his jaundice had gotten very high and we were sent to stay overnight in the NICU. Johnny and I spent the night there with him under the lights getting a nice tan. Once his levels readjusted we were sent back home where we have been ever since.

He is a really good baby and we are overjoyed to have him. I have some good lessons I have learned from him already, but that will be another post.

Mac's Bday Parties

We decided to have MacKenzie's birthday party a few weeks early this year for a number of reasons. One, I was worried that I would get more and more tired as I got closer to Raptor's due date (correct). Two, October was massively busy and we didn't want to push her party back into November (good call on our part). Three, Matt had a final the weekend closest to her birthday (and he did pretty well with no extra bday stress).

She has been very into Mickey and Minnie Mouse lately so we decided to have that as our theme for the party. We ordered a dress off etsy, decorated with red, yellow, and black (because I simply don't understand this "updated" Minnie who is pink!) and made Mac's favorite meal of pancakes, eggies, and sausage. We of course indulged in cupcakes too! 

As mentioned previously, we spent time at the pumpkin patch this month too and took a picture of Mac pretty close to her being exactly three years old!

On her real birthday we tried lighting floating lanterns...it didn't work due to mechanical error...we will try again soon!

We also managed to get together at my Dad's with that whole side of the family for a celebration for MacKenzie and my Dad. They enjoy sharing their birthdays together and now Baby Raptor get's to share in the October birthday fun too!!!

Belly!

My sister is a very talented artist who has painted my belly three times before (twice for Mac, once for Keegan). We mulled over what to paint and decided together on this picture because Baby Raptor reminds us so of a little penguin or Mumble from Happy Feet...we just need to help this little one figure out what it's heart song is. We enjoy our special sister/auntie time with the belly painting and I treasure the experiences we have with painting. I think she nailed this painting exactly and love how cute she did of a job on it.

The next two pictures are my last belly pictures...

 32 weeks

36 weeks

The last weeks of pregnancy treated me well although it got harder and harder to move around towards the end. Matt would chuckle at me rolling around while trying to get out of bed in the night to use the restroom. Most nights I would get up three or four times! I felt great overall though and enjoyed the change to cooler weather so I could go on walks with MacKenzie and Keegan that I knew would be beneficial to all of us!

Mother's Day Out

This year the girls started Mother's Day Out at our church once a week. In short, it has been a really good idea! MacKenzie beams as we go to, leave, and talk about her "church school". She is learning so much and has blossomed under her teachers. She is learning some things that I haven't been working on yet and it is fun to watch her excel even more than she was before. Keegan is having a bit of a harder time warming up to her classmates, but really enjoys coloring and music time. In fact, the music teacher enjoys Keegan a lot more than Mac because she gets enthusiastic participation out of Keegan, whereas Mac gives her looks like "what are you doing". It was nice to have a place to consistently leave the girls for all of my doctor appointments this fall and now it is nice to have one on one time with the new little one!!1

Pumpkin Patch

Last year was our first year to go to the pumpkin patch near our house for fallish pictures of the girls. We were surprised when, this year, Mac exclaimed "I took a picture in a rocking chair here". We cannot believe she remembered our previous trip here from the year before. They did not have the rocking chair out this year, but we enjoyed letting the girls run around and have a bit of a "fall" experience. In fact, we enjoyed the cheap entertainment so much, we went two days in a row. We also picked out 5 small pumpkins for each member of our family that are now happily sitting on our dining room table bringing a little fall to our home.