Wow! What an incredible week it has been! There is SO much to say and talk about! I’m just going to admit it right now… this will probably be the longest blog post you will ever read in your life! Lol 🙂
Let’s just go back to when it all started.
My last day of work was the 13th. I did this so that I had the whole week of my C-section off so that I could get prepared and have everything done. So on Monday, February 16th, I did a lot of errands that needed to be done before we were at the hospital that weekend. For Tuesday, I had planned on finishing cleaning up the house and doing the laundry that needed to be done badly! It was the day to finally get everything packed and officially ready to go. Wednesday was going to be a relaxing day and Thursday family was starting to arrive. Then Friday morning, we would get to see our beautiful little Annalise Hope.
Boy was my plan not the case. Let Your will be done, Lord…right? 😛
On Tuesday, Kev came out to the living room where I was sleeping (the recliner was much more comfier than the bed that night). He woke me up at 9:00 AM. I grudgingly made my way to the bathroom. I had been trying to get over a congested nose for a week or two and since I had just woke up; it was all trying to come out. So as I am in there coughing, Kev asked if I needed anything. I asked him to get me a cup of water. As soon as Kev rounds the corner into the bathroom, I cough…. and the floodgates of heaven were opened.
Now, remember how I said Tuesday was laundry day and packing day? Imagine the two of us: running around our apartment, getting dressed, trying to find everything that we need to take to the hospital, getting it all packed…all while my body is just gushing out water. I went through 3 pairs of pants before we made it to the hospital. It was that bad.
But finally around 9:45 that morning we made it to the hospital. They immediately took me back so that they could put me on monitors and get prepped for the day. Kev was hurrying to make all the phone calls to family members he could. Because I wasn’t having any contractions or any other signs of labor, we could take it slow. Fortunately, the doctors were okay with us waiting as long as possible to do the C-section so most of our family and our photographers could get up to the hospital that day.
By 2:00 pm, my family and the photographers had made it. It was go time. Whether we were ready or not, it was time to undergo surgery…. the surgery that will forever change our lives.
It was around 2:45 pm when the doctors took me back to put my spinal tap and epidural in. Once that had kicked in, they let Kevin and Megan (my photographer) into the OR. From that point on, everything was so surreal. I didn’t even know when they started cutting me open. It felt like one minute had passed when all of a sudden the nurse was standing next to Kevin and I telling us to look at her because she had our baby in her hands. We didn’t even know she was out when they came up to us. (This is because Annalise can’t cry because of her condition. So she didn’t really make a noise at first.) They hurry and cleaned her off just enough to where I wouldn’t be completely covered and took her measurements. She was born at 3:06 PM weighing 7 lbs. 15 oz. and was 20.5 inches long! This is when she let out her first “cry” which sounded like a dog yelping. After this is when they put her on my chest for the skin-to-skin contact.
Kev and I had a few minutes with her like that while they were sewing me back up. Because we didn’t know how long she would live and the doctors believing that she wouldn’t live longer than an hour, our family was right outside the OR doors. They were waiting in the hallway, so that as soon as the doctors were done sewing me up, they would take me into a room to where all the family could see her while we did the recovery process.
Shawnee Mission spoiled us. They allowed us to stay in a labor and delivery room our whole stay so that family could always be in there. They brought everything to us so that Annalise never had to leave our sides. The NICU nurses came down to our room every hour to check on Annalise’s vitals. The 3 things they checked every hour were her temperature, heart rate, and respitory rate. Maintaining body temperature is a huge problem for Annalise. This is because she is a preemie but also because of the size of her head. You release your heat from your head, and since hers is so much bigger than normal, she has more surface area to give off heat. So she releases her heat faster than a normal baby. Therefore, she has to be dressed in layers upon layers with a hat to help maintain her body temperature. Otherwise, she would have to stay in an incubator to keep warm. Checking her heart rate and respitory rate were also very important because this is how they told us we would know when she was passing.
All night Tuesday, Annalise had “normal” vitals considering her size, age, and conditions. For a normal baby, she was just under the average for all her vitals. But then Wednesday came and her vitals improved. She reached the normal levels for a preemie baby. Her heart rate was anywhere from 120-150, her respitory rate was anywhere from 30-45, and her temperature stayed around the 97-98 mark. She was doing so incredibly well!
We were told that when she came out, she wouldn’t know how to breathe or swallow on her own. But since she was doing so incredibly well with breathing, we wanted to see if she could swallow as well. We started off with using a syringe to put just a drop of formula on her mouth to see if she would lick it up. When she did that, we moved on to putting just the tip of the nipple in her mouth and dropping a few drops in. She could handle that so that is what we continued to do. She would eat about 1-2 milliliters every hour by doing it that way. But then on Wednesday night, something changed. Kev and I forgot we had made dinner plans with a family from church. When they called around 6:30 that night asking if we were still coming over for dinner, we felt awful for not letting them know what was going on. But being the sweet people they are, they just packed up their dinner and brought it over to the hospital. While they were there, they were holding baby girl when she got hungry. The mom was okay with trying to feed her so we gave her the bottle. Before we could even tell her how she ate or that she doesn’t eat very much, she stuck the whole nipple into Annalise’s mouth. Annalise chugged an entire ounce (30 ML) of formula!!! That was more formula than she had drank in her entire life! Ever since that night, Annalise started drinking about 1 oz. every 2-3 hours.
Throughout the rest of the stay, Annalise’s vitals stayed normal and she continued eating well. Doctors were so impressed with how she was doing. You could tell all of our NICU nurses were in love with this miracle baby. They always just wanted to stay in our room and hold her. We didn’t really have a problem with this during the night! 😉
We talked with one of the neonatologists several times to try to better understand maybe what was going on with Annalise and why she was living longer than expected. We knew going into this that Annalise has a brainstem but that the brainstem would have nowhere to send the signals. But what we found out is that the brainstem alone can make Annalise breath and swallow on her own. The doctors just thought going into it, that the pressure in her head was so large that it would be cutting off all necessary means for the brainstem to work. So that is the conclusion we have come too. The pressure and fluid in her head is not at a large enough volume to where it is cutting off the brainstem from working. Once the pressure in her head becomes so large, it will put pressure on the brainstem and make it stop working. This will probably be her cause of death…unless she aspirates before then. But with how well she is eating and swallowing, we don’t see her aspirating anytime soon.
By Thursday night, we were told that we would be able to take her home with us when we were discharged because she was doing so well with her vitals. What a huge change of events! We were so not prepared to bring a baby back home with us! The only thing we had was a crib and a tub full of clothes from my sister. Shawnee Mission helped us out a lot by giving us enough formula and diapers to last us awhile and giving us a car bed. Because Annalise is a preemie and her head is so heavy, she can’t use a regular car seat due to her head coming forward and cutting off her circulation. So all day Friday, my mom was running around town buying everything that we would need come Saturday when we got to go home. Thank goodness for mothers!!! (Mom- we cannot even begin to thank you enough for everything you did for us this past week! We love you.)
All of a sudden, it was Saturday morning. We were packing up our hospital room. Going into that week, we thought we would be packing up the room and going home without a baby. But there we were, making sure we got everything we needed for a baby to live with us. We were going home with the most special, valuable, perfect gift we could ever receive.
I remember sitting in the backseat with Annalise while Kev drove us home, just repeating over and over again- “This is really happening. We have a baby with us…she’s going home with us”.
Going home was a very exciting but frightening time for us. It was incredible that we would even be given the chance to take her home considering what we were told. But at the same time, we didn’t have the comfort of having nurses attend to her every couple hours to make sure she was okay. We did enroll into a hospice program for her though to help make the transition just a little bit easier. Annalise will have her own “case manager”/nurse which will stop by our apartment 3 days a week to check her vitals and see how she is progressing. It is completely up to us how many times we want the nurse to come during the week. Right now, because Annalise is doing so incredibly well, we are comfortable with just 3 visits a week. Who knows, maybe she will only need to come once a week before too long because Annalise starts proving that she’s a bigger fighter than she already is!
We absolutely love being at home with our special fighter. She continues to amaze us daily! She has been doing so well here at home and we couldn’t ask for anything more. Because she has a harder time maintaining her body temperature, she cannot be left alone for long periods of time. Being held gives her some of our body heat to help keep hers up so that is what is recommended. So sleeping in her crib at night is almost impossible because she gets too cold. I am definitely not complaining about this though because snuggling my baby girl all night long is just what I need! 😉
She is definitely our miracle baby who wants to show everyone that there is Someone greater in charge of life. She is ready to prove that she’s a living, breathing miracle that can bring glory to God anywhere she goes. God is the one sustaining her life and we couldn’t be more thankful for these moments with her. We are so overwhelmed by God’s goodness and so incredibly thankful to God for all of His goodness to us. She is truly an inspiration to us all. I know I am so incredibly honored to have Annalise in my life. She has taught me so much about love, joy, hope, faith, trust, perseverance, and the sovereignty of God (among other things) in just 6 short days. To God be the glory!
I cannot believe tomorrow she will be ONE WEEK old!!! You better believe we are going to celebrate at 3:06 PM tomorrow afternoon! And yes…there will most likely be a picture or two on Facebook 😛
We want to thank everyone for the thoughts, prayers, cards, gifts, and food being delivered to us. We are so blessed by each and every one of you. We are so grateful and appreciative of everything that is being done for us. We love you all.
With all of that said, I am going to leave y’all with a bunch of pictures of our sweet, precious, miracle. Hopefully she will bring as much joy and love to you as she does to us.