When Things Get Tough

Life.

Sometimes it is glorious and sunshiney and full of beauty and happiness.

And sometimes? Sometimes it is messy, crappy, and full of worry and failure.

Right now I am definitely feeling more of the latter. I am so worried, stressed, and anxious at the moment.

Maddie was born 9 lbs, 1 oz. She dropped to 8 lbs 3 oz by the time we left the hospital 2 days later (which is normal) but was back up to 12 lbs 11 oz (90th percentile) at her 2 month checkup. From then on, we have been seeing a huge decrease in weight gain for her. By 4 months she had only gained 9 oz and had dropped to the 40th percentile for weight. The doctor wasn't too concerned, as around 4 months most babies fall into what will be their regular growth curve from then on. We assessed my milk supply, as I breastfeed, and determined that it was sufficient for Maddie. We checked diaper counts, pumping amounts, and her developmental milestones. All looked good.

By 5 months, she had only gained another 6 oz. Normal breastfed babies gain .5-1 oz per day, so she was clearly behind in weight gain. We decided to up her feedings, both milk and solids, and come back for a check.

At her 6 month appointment a few weeks ago, she had lost 2 oz, putting her in the 10th percentile for weight now (13 lbs 8 oz). She is clearly dropping significantly. Even her height and head circumference growth have slowed down considerably (height has gone from off the charts to 52nd percentile. Head circumference has gone from 85th percentile to the 16th percentile).

We have been officially diagnosed as failure to thrive, meaning that Maddie is not growing as she should.

I cannot explain to you the feelings that come along with this diagnosis, especially as she is an exclusively breastfed baby (with solids). I am doubting everything about my ability to care for and feed my child. We are trying to supplement, but she is currently refusing bottles, as well as cups or baby oatmeal mixed with formula. This girl has serious opinions about food and what she likes. Surprise, surprise. :)

We still think that the problem is not my supply, as she has the required 6-8 diapers per day, seems satisfied after most feedings, and I can pump a normal amount. She is also right on track with her cognitive and motor development. Even still, we are trying to supplement and see if that makes a difference. I have no problem feeding her formula, but she just. won't. take it. It is so stressful. I am also trying a few different things to increase my milk supply. This way we can definitely rule out "not getting enough calories" as the reason for her not growing.

We have started the process of testing to see if there is something in her body that is causing her to either not absorb the calories, or to burn more calories than she is taking in. It is heartbreaking to watch your little baby screaming bloody murder as the nurse tries to take blood from the teeny tiny veins in her arm. To think that there could be something wrong with my perfect baby. Some of the possible diagnoses are terrifying to me.  I can only hope that the fix is something as simple as a formula bottle each day or an iron supplement if she is anemic. I am literally driving myself crazy with all the thoughts of "what if." But I can't seem to stop my brain from thinking worst case scenario.

This week, at her follow up, she had only gained 2 oz in the past 2 weeks. Still not enough. Her blood work came back perfectly normal, which is good, but still means that we don't know what is going on in her little body. We have made appointments with the pediatric GI and the lab at Phoenix Children's, but they can't get us in until late May/early June. I feel so helpless. I don't know what to do for my little girl! And it makes me even more worried that we can't get her in to the doc for nearly two months. We will continue to do weight checks with our regular pediatrician, to make sure she is doing okay, but at this point it is a waiting game.

After this appointment, we have narrowed down the basic reasons to "not absorbing enough calories" or "burning too many calories." She is eating plenty of calories. We may need to schedule an appointment with a pediatric cardiologist as well. I feel like a failure. I know it is nothing that I did, and I know that she will probably be fine, but I just can't help it. I look at my skinny-minnie baby and wonder what I did that is causing her not to grow. I don't care if she's skinny, she just needs to be growing!!

I know I am not the only one to face this, very general, diagnosis with their baby. However, it is so much harder than I would have thought. I can't keep the negative thoughts away. I hold her tighter as each day passes without any answers. I hope she knows how much I love her, and that I am doing everything in my power to help her.

On Hard Things

The Child Who Was Never Born sculpted by Martin Hudáček

 Preface: I have had this post sitting in my drafts folder for many months now, over a year. Sharing it is very, very difficult for me. I tend to like my personal life, well...private. But for some reason, I feel compelled to share this now. While it is scary, it also feels very healing. Over the past year or so, I have begun to share my story publicly, in bits and pieces. Here it is in its entirety. It is my hope that someone going through this someday may read this and find some comfort in knowing that they are not alone, and they will make it through.

There's a subject that's been on my mind lately. It's a subject that is kind of taboo to talk about in our family-oriented Mormon culture.

Infertility, and the heartache it causes.

I know some people are starting to be more open about this topic, but it's still very much considered a personal topic. You don't talk about it, you suffer in silence, telling maybe a few trusted friends and family members. But, you are expected to keep it quiet and wait for the time that the Lord decides to bless you with a family. You are told that everything happens on the Lord's timetable, and anything you say against that is just complaining and whining about the burdens you've been given, and that you obviously don't have enough faith if you are having a hard time with it.

Not everyone has this same experience, but this has been my life for the last year and a half.

My worst fear growing up was that I wouldn't be able to have children when I was an adult. I LOVED kids, was considered the Ultimate Babysitter and even dubbed "The Baby Whisperer." My whole life has been devoted to taking care of other people's children, as a babysitter, nanny, schoolteacher, and daycare provider. I know way more than I should about pregnancy, childbirth, caring for infants and toddlers, and raising kids (although I know, for a fact, that I am in no way an expert!). In the back of my mind has ALWAYS been the fear that I will never be able to have my own kids. I honestly don't know why this has been my biggest fear in this life, but it always has.

So, you can imagine my dismay when I learned that having a child was not going to come easy to James and I. A quick aside - this is very much James' journey as well as mine, but right now I am writing about my personal experience and feelings and not speaking for him.

At my brother-in-law's wedding, I had the strongest impression in the temple. It was time to start our family. It wasn't the "baby-hungry" feeling I'd had off and on, but a distinct prompting that it was time. I couldn't deny the feeling that I had, even as I immediately started to think of excuses - I'm still working, we can't afford a baby, we are moving to a new place, we have no resources, etc, etc. I felt very strongly that it was time anyway, that the Lord would work everything else out. James and I talked about it at length in the days following the wedding, and decided that we would start trying.

I honestly expected to get pregnant right away. That had happened to so many people I knew (even though I now know that it is not the norm).  I pushed away the fear in the back of my mind and hoped and expected that I would conceive right away.

And guess what? I did, only to tragically lose my baby soon after. This was my first experience with miscarriage, and I was heartbroken. I hadn't told anyone that I was pregnant, except James and a dear friend. I lived my heartbreak in secret. I felt like I had failed as a woman, and I couldn't talk to anyone about it. I tried to be happy and cheerful and my normal self, but I can't tell you how many tears I shed upstairs in my room. I lived through feelings of guilt, of shame, of sadness, of grief.

James and I decided not to see a doctor at the time; my miscarriage was very early and when we called an office, we were told that it was really up to us if we wanted to come in. We were in the midst of a move and decided not to, this time. Once I recovered, we decided to start trying again, and, lo and behold, another pregnancy. This time confirmed by a blood test.

This pregnancy was probably the hardest for me. For some reason, it took them a week to get my blood test results back to me. Four days after visiting the doctor, the awful bleeding and cramping began again. I was hoping that it was just my period starting again, but when I got the results of the HCG test, it showed that I was pregnant at the time it was taken. Another baby lost. I went into a bit of depression after this loss. I spent days home sick from work in bed, mourning for my babies. I wanted to be a mother more than anything in the world. Why was I being denied this part of life? For weeks, months, I struggled with this. Honestly? I am STILL struggling with it. These questions haunted me. Why wouldn't the Lord entrust me with his spirit children? Was I not good enough? Would I be a terrible mother? What about all the babies in this world that are abandoned, abused, unwanted? All I wanted was one. One baby to love and take care of and teach and learn from.

I went to church and saw all of the families with small children and babies and mourned. Every time I checked Facebook I saw another picture of a cute baby or another pregnancy announcement (some of my friends on baby #2 or #3). I went to the store and was tortured by a sweet baby face. Work was the worst. 8 sweet babies that I loved on and wished were my own. I saw them every single day, loved them, received their love in return, watched and encouraged all their milestones, rejoiced in every smile, every step, it all.

I'm not sure why, but I still kept all this secret for a long time. I think I felt that I didn't want to deal with it at all, and I worked on tucking it away and forgetting. Didn't work, but I tried. After this miscarriage, I visited with an OB, trying to figure out the problem. I knew that 1 miscarriage was no big deal, it happens to almost every woman. The chances of two in a row were still fairly common, but I wanted to get checked what I could. The doctor took all sorts of labs and did an ultrasound. They didn't find anything of concern, and I was told that I could start trying again whenever I felt ready and that, in his opinion, if I wanted to be pregnant in 6 months, I would be. I felt much better after hearing this. I was calmed knowing that even two miscarriages in a row was still not unusual. I would get pregnant, the doctor said so!

In the four months after that appointment, I lost two more babies. The last began on Christmas Day. Because I'd kept the others secret, I felt that I couldn't really talk about the more recent ones. I refused to go back and see the doctor each time, convinced that there was nothing he could do to help me. I started a downward spiral that lasted for a very long time, and that I am still not out of. The feelings that I'd been having before tripled and quadrupled. When someone would ask, "when are y'all gonna have kids?" I would have to hold back tears. When listening to a lesson at church on family, and not postponing having kids, and all the blessings that come with having a family, I would have to leave the room. Usually in tears. I couldn't stand to see happy families at church, at the store, at work. Hearing a pregnancy announcement was enough to reduce me to tears and the question of "Why? Why not me?" I was not able to attend baby showers. I just couldn't do it. I relentlessly researched everything I could find about miscarriage and infertility. Knowledge was the only thing that helped. I never really went through the grieving process, I think. I wasn't able to get any closure and constantly mourned for my babies.

After this experience, I will NEVER ask someone when they are having kids, or why they don't have children. It is a very painful and personal question! Why do people who don't even know me think that they have the right to know about my family planning? I hate it, and I have learned how hard of a question that can be for those struggling with any kind of infertility.

Sometime after this, James lost his job, we lost our health insurance, and moved back in with my parents. Any time my brain had a free moment, I was reflecting on the babies that I had lost. The first miscarriage is the only one that I distinctly remember my due date. Every month on the 13th, I think about how old my baby would be now. Terrible train of thought, but I just can't help myself.

I had a very interesting experience with one of the McCutcheon grandchildren this spring when we were at the ranch. He asked me if I had a baby in my tummy. I said no. He then asked where the baby went, because there was one, wasn't there? I honestly had no idea what to say to this four year old. How do you explain miscarriage in an age appropriate way? I didn't want to explain to him, so I just shrugged my shoulders. He went on to say that my baby girl must be with Jesus now and did I give her a name?

By this point I was almost in tears and his poor mom was trying so hard to get him talking about something else. Something struck me about Lucas that day though - he was very serious about what he was saying. He looked me in the eyes with an intelligence that is not of a typical four year old. I know he was talking about my baby girl. Ever since then, I've thought of my sweet baby girl that I lost. I don't know which time was her, or if all 4 times were her trying to come down and gain a body. It helps to think of her as a person. I know exactly what she would look like if she was here today. In my mind, I call her Lydia. She is beautiful, smart, and someday, she will be mine, whether in this life or the next.

No one can understand the pain of infertility or miscarriage unless they have gone through it. While I would most definitely never wish this pain on anyone else, it is very hard to see your close friends and family conceive without any major problems. I am so happy for them, but at the same time, it's a painful reminder of what I've lost and may never have. It's a weird conundrum, and I hope that I haven't slash won't offend them. I really, truly, am excited for them and their new adventure, but there are going to be moments where it will be too much for me to handle. I'm only human, and haven't conquered my grief yet.

My story doesn't have an end in sight yet. I have no official diagnosis. I have good days and I have not-so-good days, but I always manage to hold on to the hope that someday, I will have my rainbow baby. The miracle child that will be mine after the storm.

Image source

I don't know why I felt the need to share this. Maybe because it feels better to have it out in the open. Maybe I feel relieved that it's no longer a secret. Maybe I'm in need of love and support. Maybe I hope that this can help someone else who has gone through all of this - they can at least know that they are not alone. That was the biggest help for me - in the form of a family member who has experienced even more heartache than I have. She has listened to me go on and on and I am so grateful. She has told me her own experiences and told me things that I needed to hear, but didn't want to. She doesn't judge me, and for that, I am eternally grateful. I feel safe talking to her, and she has been more help than she probably knows, even if I don't want to take her more recent advice. :)

Today, I am adding my story to the many that have come before me, and those that will come after me. I am not unique in my struggles, and I admire the many women that have gone before me. If they can be strong, so can I. Someday I will look back on this and know why I had to struggle. Someday I may even laugh a little at how intensely I felt. Someday, when I am raising my rainbow baby(ies).

I hope that, as we go through our lives, we can be more sensitive to those struggling with fertility issues. No one wants to feel like a failure for something that isn't their fault. No one wants to be told that they must not have enough faith. Having someone list off the blessings of children and then asking me what's holding me up and telling me that I'm "selfish for postponing having kids" is torture. Hopefully we can all have enough compassion and brainpower to think before we speak. To realize that someone's life isn't all that it appears to be. To realize that they have struggles we know nothing about.

Okay. off my soapbox. But, really, if you know someone going through any of this, give her a hug. Let her know you love her. Don't tell her there will be other babies. Don't patronize her. Love her. Support her. Let her grieve. Show her compassion and don't let her wallow in her grief. Help her to have hope.

We all have our journeys through the valley of the shadow of death. At some point or another, everyone crosses through. THIS is my story.


Update: Now, I have my rainbow baby, my precious Maddie. She is a beautiful gift from heaven, and I am grateful for her every single day. Everything I went through to have her was worth it. She is my rainbow, my solace, my companion, my darling little girl. I look at her and I just can't believe that my miracle has been given to me. I am still in disbelief - is this really my life now? She is really mine, to hold, and love, and cherish, and teach? How did I ever get so lucky?