Why I Am Not Mad At God

DH and I got news over the last month that our sweet baby girl will not survive this pregnancy. It is absolutely devastating. Obviously we are heart broken and experiencing things no parent ever should. There is nothing in this world that we can do to help our little girl. And so we just have to wait, helplessly, until her heart finally gives up. As someone who likes to take-charge of situations and take actions to make things right, not being able to DO anything is very stressful.

To say that we are on an emotional roller coaster is an under statement. Yet in all of the emotions I am experiencing, I've never once been mad at God. I know several people do have those thoughts when walking this hard road and that it is completely normal. But to me it's never been a question of God's provision, protection, or grace. This isn't something that was a part of God's plan, although I believe he can use the situation to bring us closer to him.

I believe that God created this world to be perfect (Genesis 1:31 - 2:1). I believe that the studies of science show how intricate, beautiful, and intentional his design was. Things were made to work in a certain order. We were never meant to experience sickness, natural disasters, or death. But something happened to change all that. Sin entered the world, and with it came death, chaos, and destruction (Genesis 3, 1 Corinthians 15:56, Romans 5:12). The result is that we no longer live in a perfect world. We now have horrible natural disasters like floods and tornadoes that claim many lives. People get sick with diseases like cancer and pass away. Babies in the womb are not always formed correctly and pass away before they even get a chance to live. This is not a direct result of God's will or something that he directs to happen. It is the consequence of living in a broken world. And until this world is redeemed completely, these things will continue to happen. To "good" people and to "bad" people. No one is immune from the consequences of sin. However, through Jesus, we can have hope of redemption after this life.

But I believe we can have hope for our daughter even in the midst of our grief. I am reminded of the story of David (2 Samuel 12). David's child was very sick and about to die. David wept and pled with God for days to save his son. But once his child passed away, David's mourning was over. His servants were perplexed and asked why he was no longer weeping for his child. His response "I fasted and wept, thinking God might have mercy on me and the child would live. But now that he’s dead, why fast? Can I bring him back now? I can go to him, but he can’t come to me." I know the situations are different, but the pain of losing a child is the same. However, we have hope that someday we will go to be with Aubree even though she can't be with us right now. This passage also gives me hope that children go to heaven (something that is actually pretty divisive within Christian circles, not comforting to find out when going through a situation like this).


To be honest, it kind of irritates me when people say things like "God won't give you more than you can handle", or "God only gives things to people that are strong enough to handle them." The truth is, there is nothing in the Bible that states God won't give us more than we can handle when it comes to trials (although there is a similar passage regarding temptations - 1 Corinthians 10:13). This life is ALWAYS more than we can handle. If we could do this on our own, then what need would we have for Jesus? But what God has promised is that we will never be alone (Deuteronomy 31:6,8; Joshua 1:9; Matthew 28:20 to name a few). There is nothing we can face that he can not help us through (Luke 1:37). We never have to be afraid (2 Timothy 1:7). And we can approach God at ANY time (Hebrews 4:16). But each test and trial presents us with the opportunity to exercise our faith and grow closer to God (James 1:2-4). 

Even though I am sad, I am hopeful. And I have so much peace. It is amazing to see how God provides enough grace to get through each day. We are finding joyful moments in the middle of the sadness. I am excited to meet my daughter even though I know we will have to say goodbye soon after. We hope and pray that God will work a miracle for Aubree. But even if one does not come, we will still praise him (Daniel 3:17-18 - a loose interpretation from me).

Aubree Grace

We received wonderful news the first weekend in February. Our second baby was on the way. We had been hoping and praying for a sibling for DD. I anxiously awaited the first few weeks. Having lost my first pregnancy at eight weeks, I was really nervous until I had my first doctor appointment. Once we got to hear the baby's heartbeat and my blood work came back perfect, I finally started to relax and enjoy just being pregnant. Ok, I could have done without the morning sickness, but overall I was enjoying the process. I had been a nervous wreck the whole time with DD and never really enjoyed just being pregnant. This time was going to be different.

We passed the first trimester and made our official announcement to family and friends that our new little pumpkin should be arriving in October. Just in time to celebrate our fourth anniversary. We had kept everything from DD and intentionally purchased many things as gender-neutral as possible so they could be used for several kids to come. DH and I started to pick out names. Boys names are still something we can't agree on. But just like with DD, we found one single girl's name that we both loved. We were excited to find out the gender at the end of May so I could begin shopping all the summer garage sales for boy clothes if we needed to. I made an Amazon registry for the handful of items we would need for another baby. We started planning out arrangements for DD's room since she would need to share in our tiny house.

The last day of April I went for my routine 16-week checkup. I checked out just fine, but something was odd about the baby's heartbeat. The doctor still couldn't pick it up on the dopplar, so she took me in for a quick scan. What we saw was a beating heart, but even in my extremely limited knowledge of anatomy I could see something was very wrong. The doctor set up an appointment with the diagnostic imaging center for a better look the next morning. At that appointment we learned our baby's heart was not functioning correctly. The ultrasound technician had the actual doctor come into the room to explain to us what was happening. The next morning we were sent to the maternal fetal specialist for a better scan of the heart and more details on where to go.

The maternal fetal specialist confirmed our baby's heart was not functioning properly. They gave us an initial diagnosis of situs inversus (reversed organs), HLHS (under-performing heart chamber), and complete heart block (malfunction of the heart's pace maker). The doctor did an amnio test that day to see if these defects were caused by genetic factors or just random chance. Over the next two weeks we got the results of those tests back in pieces. What we learned is that our baby was fine as far as the genetics were concerned. We also learned that we were having a little girl.

Aubree Grace

Three weeks after our initial specialist appointment, we had another at the same place to see how Aubree was growing. Her growth was right on-track, all organs were present, and things seemed to be going ok. Except for her heart. The heart had started going into heart failure due to all the complex issues. The functioning muscles of the heart were trying to compensate for the under-performing muscles. This resulted in thickened walls of the heart that could not beat properly because they were too stiff and spongy, causing an even lower heart rate around 80 bpm. Due to the heart not working properly, fluid was starting to accumulate in several places within the baby - in the chest cavity around the heart and lungs, and in the belly. The doctor told us her chance of survival was almost 0% barring any kind of miracle. But just to be sure, he consulted with a pediatric cardiologist.

A week later we had an appointment with the pediatric cardiologist. We learned the initial diagnosis was not quite correct, but the issues present were even more severe than originally thought. Aubree has heterotaxy and several resulting issues. Her heart rate was down to only 50 bpm. Her belly is swelling with fluid, and the accumulation around her heart is causing it even more distress. Even if she could survive to full-term she would need complete reconstructive surgery on her heart and the arteries & veins. They recommended that we continue my normal course of care with the OB I typically see, and recommended palliative/hospice care for Aubree.

This month has been one hell of a roller coaster. I feel like we have lived several years in just the span of a few weeks. We went from excitedly expecting our second baby to facing the heart break of realizing we will not get to bring Aubree home with us. Through it all, DH and I have grown closer together and our faith has also grown. For now we will enjoy the times when we get to see her on "camera", we cherish our pictures, and we plan for the day when we have to say hello and goodbye at the same time. I love her kicks and flips.

DIY - Emergency Diaper Change Kits

We are getting ready to take DD on her very first plane ride! In preparing to travel with a toddler, I wanted to make sure we had the necessities easily accessible without packing up all of her earthly belongings just for an extended weekend. With a toddler that is not yet potty trained, diapers and wipes are definitely an essential!

I am taking individual diaper changing kits in my carry-on and packing the rest of her diapers into our checked luggage. These kits fit nicely into a purse or glove box and would be great to keep on-hand for quick trips out or for emergencies. Or assemble several kits for a practical baby shower gift! Each kit can be quickly put together with items from around the house. After being used, the kits can be re-packed or completely disposed of. It just depends on how messy things get!

EMERGENCY DIAPER CHANGE KIT:

• 1 diaper
• 2 wipes (or more, depending on your preference)
• 1 plastic shopping bag (finally, a great use for the plethora of Walmart sacks!!)
• 1 quart-size freezer zipper bag
• 1 sandwich-size zipper bag

Assembly:

1. Place one diaper into the quart zipper bag. I turned mine sideways but it was a tight fit. Anything larger than a size 3 would need to be put in the opposite direction or folded in half. 
       *Freezer bags are more sturdy. I recommend them over the regular bags!!
2. Place two wipes into the sandwich zipper bag. Roll bag to squeeze out the air before sealing. Place sealed bag into quart bag with diaper.
       **I only did two wipes in each kit based on our normal diaper changes. In my purse I keep another baggie with several wipes for really bad messes or quick hands & face clean-ups.
   
3. Lay plastic sack flat and fold into quarters width-wise, then length-wise. Place into quart bag.
   
4. Roll quart bag from the bottom up to squeeze out air before sealing. Adjust contents if needed to fold bag in half (for smaller diapers).
   

I have made four of these to put in my carry-on and one to put into my purse. As you can see, these are about the size of my hand and maybe 1/4'' thick. They will easily fit into any bag or glove compartment. When it comes time for a diaper change, I won't need to bring all of our belongings with us into the tiny airplane bathroom. We will just grab one kit out of our bag and go.

So why did I choose this random assortment of items?

• The plastic shopping bag can be unfolded and used as a changing pad. This will also be useful for disposing of the waste when you are finished - simply bag everything up and place in the trash can. 
• The quart bag has a few possible uses: 
• Bagging up really stinky diapers if no trash is available. I've tried this out with a stinky diaper in a hot car and there was no smell several hours later! 
• Bagging up clothes if there was a bad mess. Again, will contain the smell for several hours until the clothes can be washed. 
• Can be re-used for another kit if there was no major mess. 
• The sandwich bag can also fit a diaper for disposal or be re-used for another kit. Alternatively, you can place your hand into the bag and use it as a glove if needed.