Mabel's nursery

Thursday, July 7, 2016

I shared this quote on instagram a few weeks ago and I have it taped on my work computer, I feel like it really explains my whole life right now.

We just broke ground on a pretty large renovation/addition project on our house. The result is going to be a wonderful change, but right now my heart still feels incredibly broken. This project is typically something that I would be really excited about, but I don't have the same feeling of excitement about anything these days and this project is a distraction, something to keep me busy and make time feel like it is moving faster. Because of this, I am finding myself feeling anxious and just wanting the project to be finished already. It hasn't helped that we have spent almost five months already planning and getting everything in order.

The one thing about the project that I am most looking forward to is our new kitchen. I have always wanted to do a kitchen renovation, so this will probably be my only opportunity. The very best part of the kitchen is that Mabel's nursery is becoming part of our new eat-in kitchen. It sort of sounds odd, but the way our house is laid out now, the nursery was a walk-thru bedroom between our kitchen and hallway. This is really special to me, because I know we will spend more time in this room than any other, so her room will be the heart of our home.

The room gets great light, so it will really be a great place to sit and enjoy a cup of coffee and look out into our backyard. I am looking forward to spending a lot of time in this room just like I would have done in Mabel's nursery. I am hoping to share our plans and the progress over the next few months.

Four Months

Tuesday, April 12, 2016

Mabel would be four months old today. I haven't had much to say lately, so it didn't seem necessary to force writing a post. We are mostly just sad and miss our baby.

I had a moment last week where I realized that everything that has happened was truly real. We are no longer anticipating Mabel's arrival. It sounds crazy, but we had planned for her for so long and then she came and went so quickly that it is difficult to fully comprehend that we aren't just still waiting for her. We had been coping with the situation leading up to Mabel's birth, during her life, and now, grieving.

On top of grieving and allowing God to heal our hearts, we are figuring out how to move forward. We are pretty much back into our old routines now since I went back to work a few weeks ago. It is nice to feel productive, but at the same time I hate that we are back to our old routine since we should be adjusting to a new one with our sweet girl. And yet, each day I am thankful that God gives us the strength and grace to get through another day and that we got to spend those five weeks with Mabel.

Pictures of Mabel

Thursday, February 4, 2016

In preparing for Mabel's memorial, Joe and I realized that between the two of us we had at least one picture of Mabel from every day of her life, so we got them all printed and displayed them at the church. I spend a lot of time scanning through these pictures and reliving those 37 days that we had with Mabel and thought those of you that couldn't make it might like to see them.

One thing I don't think I have ever mentioned on here is that we were able to have Mabel baptized on Christmas Day by the wonderful Reverend that married Joe and I. The hospital even had a beautiful gown to put her in that was made by a group of hospital volunteers. It was very special and will always make the holidays even more meaningful for us.

Memorial for Mabel

Wednesday, January 20, 2016

We are having a memorial service for Mabel this Friday, January 22nd, at 4 pm at Holy Trinity Episcopal Church in Decatur, GA. We are inviting you, our friends, to join our family to celebrate sweet Mabel.

Additionally, we have heard from many of you regarding sending flowers. In lieu of flowers, we have made it possible for donations to Dekalb Medical to go to the NICU in honor of Mabel. One day soon I will write about the amazing men and women that cared for our baby and us, they will forever hold a special place in my heart and I plan to visit them often.

To make a donation online, you can go here and designate the NICU Fund. Then under Tribute Information, you can enter Mabel Sommers under name and "in memory of" under the type. Donations can also be mailed to Dekalb Medical Foundation, 2701 North Decatur Road, Decatur, GA 30033. Include memo line "NICU Fund - Mabel Sommers."

January 17th

Monday, January 18, 2016

Our miracle baby went to be with the Lord yesterday morning. We are heartbroken, but know that she is healed and much happier without tubes in her mouth and monitors beeping all around her. She will always be our first baby and we will love her forever.

I had been planning to write a post about our meeting with her team of doctors on Friday and hadn't gotten a chance. It was an emotional meeting as we were finally having to make some decisions on her future, and ultimately decided that we wanted to keep her comfortable and we wanted to bring her home. The wheels were put in motion to get the equipment needed to set her up at home with the help of hospice. We were comfortable with this decision, although I think I had some hesitations on the emotional side of having her at home and then one day not having her there. At the same time, we were limited to our space with her and the time we were able to spend with her at the hospital so it was going to be nice to have her with us all the time.

Mabel has had lots of visitors over her five weeks here with us. She was not only loved on constantly by us, her grandparents, and aunts and uncles, but great grandparents and great aunts and uncles and second cousins. We are so happy that our families that we love so much came to meet our girl.

Saturday, two of my close high school friends, their husbands, and another cousin of mine came to meet her. All of us went to the hospital together. They typically only allow two people in to visit at the NICU bedsides at a time, but Mabel had luckily had her own room and they were pretty lenient on us. Wanda, one of the friendliest faces in the NICU, was working the front desk on Saturday and let all 7 of us in to see Mabel together. It was fun for us to all be in there and not have to continuously rotate people in and out. Joe and I enjoyed hanging out with our friends for the afternoon and evening.

After saying goodnight to our friends, Joe really wanted to go to the hospital. It was late, but I agreed and we went to see Mabel. She was peacefully sleeping and breathing really well. I am so thankful we saw her that night and gave her lots of kisses.

We woke up around 6:30 am Sunday morning to a call from the NICU. We immediately knew that something was wrong and I answered and spoke to Mabel's doctor. She said that Mabel was having one of her episodes and we needed to come to the hospital. These episodes were something that the doctors weren't able to find an explanation for, but her oxygen levels would randomly drop quickly and her heart rate would follow. They had been able to turn up her oxygen levels and she would recover, slowly, but she would recover. These episodes had just started a week or so ago and I was getting the sense that her breathing was becoming the biggest issue.

We got dressed and to the NICU in less than 20 minutes. As we walked towards Mabel's room, I could see her night nurse and doctor sitting at the desk nearby and I started to cry because I could see her monitors were all quiet. She had already left us.

We are so thankful that she went to heaven on her own time. Joe says that she made it easy on us that way. I know what he means, but there is nothing that really makes this any easier. I do know that she was the most lovable baby which is fitting as her name means "lovable." She was also the sweetest baby and even her little cry made me smile. My darling Mabel, a huge piece of my heart will always belong to you and I look forward to finally being able to hold you in my arms all day every day in heaven.

My love will follow you

Tuesday, January 12, 2016

Mabel is a month old and the emotions have been all over the place today. I woke up sad that it is still just Joe and I and our crazy dogs at the house. Then I got to the hospital and Mabel slept on my chest for a couple of hours and all felt right in my life.

We were sent the book "Wherever You Are, my love will find you" by Nancy Tillman by my very sweet coworker that was in a similar position not too long ago. I have trouble getting through it without tears flowing, but the first and last pages could not be more true...

"I wanted you more
than you ever could know,
so I sent love to follow
wherever you go."

"You are my angel, my darling, 
my star...and my love will follow you,
wherever you are."

4 Weeks Old

Saturday, January 9, 2016

Our sweet Mabel Caroline is four weeks old! I have been reading the blogs about other children with Trisomy 18 and was reminded what a miracle this is! Thank you Lord for the 28 days we have had with this beautiful girl.

I took this picture last night after the shift change when I went to see how my girl was doing and see who her night nurse was. It makes me giggle, because her little shoulder wouldn't stay in her outfit, that hat wouldn't stay on her head, and it took three or four tries to catch her looking at me. :)

Time warp

Thursday, January 7, 2016

I swear I woke up thinking it was Friday and at the same time thought I had only missed one day of posting about Mabel's journey, turns out I was totally wrong. Between days in the windowless NICU and the holidays, we have been in a serious time warp.

Tuesday was a really hard day. I had my postpartum follow-up and was a little emotional walking into the office. I was supposed to still be pregnant and the girl in front of me was probably due any day like I should have been. Then my OB had not been informed of Mabel's condition and I had to tell her, she was pretty shocked. Finally I had to wait a while to check out and the girl in front of me was there for her first prenatal appointment. I made it to the parking lot before I broke down.

Yesterday and today I have felt an unexplainable sense of peace. Nothing has happened to relieve the pain of this situation, but I haven't been nearly as sad and I know that this feeling could only be the result of God's love. 

Mabel graduated to a bigger bed a few days ago since she was keeping her body heat well. She gets to wear clothes now and I think she likes it much better. 

They are slowly weaning down her oxygen and pressure levels, and she continues to do pretty well. We are hoping that she can come off all breathing support before she comes home, but there are several steps to accomplish before we get there. Mabel is gaining weight, but slowly, so they have added extra calories to her milk. She has to show good steady weight gain over a certain amount of time in order to come home, so I am praying that this starts to pick up. She is still feeding through a feeding tube and the doctor said they can send her home on a feeding tube so she does not need to be bottle feeding or breast feeding in order to leave the hospital. However, I am praying that our baby girl learns to at least take a bottle, because I know that both Joe and I would happily hold her and give her a bottle any time during the day or night.

On a side note, thank you to all of you for the calls, messages, and most importantly, the prayers. We are so thankful for all of the support.

Mabel the Miracle

Monday, January 4, 2016

Joe and I went to the hospital last night around 9 pm. The NICU only closes from 6:30 - 8 am and pm  for the nurses shift change. I am so thankful that we live only a mile from the hospital and are able to come and go as often as we like.

I had been at the hospital by myself earlier in the afternoon/evening and got to hold Mabel for a long time, so I let Joe have a turn. Watching these two makes my heart explode.

Joe has been the most incredible husband and father throughout this journey. We had a meeting with Mabel's "team" of nurses and doctors this morning. Joe had his little notebook ready with questions and notes from our prior updates while I just sat there holding back tears and trying to control my quivering lip.

I am having a really hard day since the meeting this morning. It was a reminder that Mabel has a lot going against her, not just the Trisomy 18. She has a hole in her heart that is allowing blood to circulate through her lungs twice instead of just once, she's gaining weight slower than the doctors would like, and she was premature. But then again, Mabel has defied the odds by being born alive and making it past 15 days so she is definitely a miracle!

A New Year

Sunday, January 3, 2016

The last three weeks are such a blur for us that it is hard for me grasp that it is 2016. The thought of this new year brings hope for joyous moments as well as the unimaginable pain that I am trying not to anticipate.

Our sweet, tiny baby, Mabel, was born December 12th at 12:21 am by c-section after a roller coaster ride of a day. It started out as what had become our normal Friday routine where Joe and I went to Maternal Fetal Medicine for one of the many biweekly ultrasounds that I had been having. Mabel had been measuring small since the anatomy scan at 18 weeks. We were told and assumed that she was just going to be small like her mama. The ultrasound that morning showed that the blood flow in the umbilical cord was failing and the doctor came in to say that we needed to head straight to the hospital. I was devastated. Things seemed to be going so well and I was sure we would make it to 37 or 38 weeks at least.

The doctor from MFM called ahead to the hospital and informed my OB on call that we were headed over, so we waited a short amount of time before getting set up in the labor and delivery room. Sarah, my nurse for most of the day, was a high school classmate of Joe's and so kind and comforting. The doctors agreed that we could attempt an induction, so around 11:30 am they started Cervadil, the pre-cursor to Pitocin, when you are only 34 weeks and your body is no where near labor. Almost twelve hours later I had started having contractions, but Mabel's heart rate was dropping with each one. The OB had warned me that we may end up in a c-section earlier in the day, so when they told me that my baby's heart rate was dropping I was ready for them to deliver. Mabel had appeared perfectly healthy on the 12+ ultrasounds we had over the last 10 weeks, so I didn't want to push it.

They prepped me quickly and we were in and out of surgery within an hour. I got a quick glimpse of Mabel as the NICU team whisked her off and Joe followed them. Joe met me in recovery. Mabel was doing well, but only weighed 2 lbs 3 oz. (Ultrasound measurements are crap - they showed her closer to 3 lbs.)

I had done plenty of googling while laying in the hospital bed before Mabel was born and was hopeful we were taking her home with us, but we had also met with the NICU head nurse to find out what to expect if did need to spend time there. She thought probably 7-10 days, but of course they wouldn't know anything for sure until she was born. So then I was hopeful we were taking her home by Christmas, but at 2 lbs 3 oz I knew that wasn't going to be the case and we were probably looking at a date closer to five weeks later near her due date.

I shed hundreds of tears before getting discharged a day early on Monday. I could hear babies crying in the rooms around me and I hadn't even held my baby and knew I was going home empty handed as well. Typing this brings more tears to my eyes, because three weeks later I am still hoping to bring Mabel home and hold her more than just a couple of hours at a time. I even had a dream the other night that I got to hold her while she slept all night long.

The amount of pain I felt seemed unbearable and then on December 21st we got hit with the hardest news that anyone could possibly receive. Mabel has Trisomy 18. In the words of the doctor "it was not a good diagnosis" and continued to inform us that most babies don't make it to their first birthday.

Our sweet girl is three weeks and two days old. She is still in the NICU, but if things go well we may actually get to bring her home. I know that we have a long journey ahead of us, but we love Mabel so much and am going to give the best life that we possibly can.