Author: Mandy Hawks

Finding Joy in Naomi

~ Mandy Hawks ~ 3 Comments

Naomi was named after Naomi from the Book of Ruth. Her name means “my joy,” “my bliss,” and “pleasantness of Jehovah” and she truly is my joy. We named her this after we found out about a birth defect that she has called an omphalocele. An omphalocele is a rare abdominal wall defect in which the intestines, liver, and occasionally other organs remain outside of the abdomen in a sac because of a defect in the development of the muscles of the abdominal wall (exomphalos). We first learned about this defect when I was just 18 weeks pregnant and we knew that it would hold some challenges for her but like Naomi in the Bible we had faith that God would restore her. My doctor was convinced that this defect was the result of a fatal chromosomal defect called Trisomy 18. If Naomi were to have this, she would not survive more than a few hours past her birth. My husband and I didn’t want to be caught off guard, so at the recommendation of our doctor, we scheduled an amniocentesis to find out if she had this defect. After several days of waiting we received good news: Naomi did not have Trisomy 18!! What she did have was an extra piece of a chromosome which will cause her to have smaller extremities (arms, hands, legs and feet) and possibly have some difficulty with speech. She and I have this in common.

After her birth, the doctors at the NICU were not convinced that the amnio was correct so they reordered the tests using her blood and added another test to check for Beckwith Wiedemann (an overgrowth disorder usually present at birth, characterized by an increased risk of childhood cancer and certain congenital features. Beckwith syndrome can also cause child behavior problems.) We got a consult from a geneticist who advised us that children with omphaloceles either have Trisomy 18, or they have Beckwith Wiedemann, it’s rarely, if ever just a random defect. When the repeat panel came back, it confirmed what the amnio had already uncovered. The Beckwith test took longer, but last week we got the results back and they were negative! Despite the claims of the medical staff, Naomi’s omphalocele is benign with no identifiable cause. Her surgeons are treating it with medication to help skin grow around the sack. At some point in the future they will begin to wrap it in such a way that it begins to be compressed back into her abdomen to establish domain in the area her organs should be located. She will need at least one surgery to completely resolve the defect but other than some possible long term issues with digestion she should have no long term issues from it.

Currently, eating has been a challenge for her. Once she was able to begin starting feeds, the surgeons were pushing her to increase her continuous drip by .5mls per hour each day. She was not able to tolerate very much before she would begin vomiting and we would have to stop her feeds completely for several days so that she could recover. The first time she had issues I suggested that we give her a couple of days between increases but it took three more instances of vomiting before the doctors and surgeons were convinced. The last instance of vomiting was so severe it seems to have caused her to aspirate into her lungs which has further complicated her existing lung disease and caused pnemonia which she is currently fighting off. She has also had 3 separate infections of staph and gram negative rods in her trachea. The doctors suspect that she is “colonized” with these bacteria which means she will always have them, and sometimes they will make her sick.

Because she was born so prematurely her lungs were not developed enough to handle breathing on her own. She has been on a ventilator for most of her life. The medical staff has extubated her three times, the first time she was not able to breathe without the ventilator for any longer than 10 minutes. The second time she only lasted an hour. Most recently was the third attempt and she was on a RAM cannula (CPAP) for a week before getting too tired to maintain her oxygen levels without a great deal of assistance. Prior to this last attempt the doctors were preparing us for her to undergo surgery for a tracheostomy (an opening in the windpipe which would allow direct access to the breathing tube and make breathing easier for her). This would be a better course to her staying on the ventilator with an endotracheal tube which will cause more and more problems for her the longer she is on it. It is unclear to us at this point as to whether this is still our next step or if the fact that she did so well before being reintubated has changed things, especially since she contracted an infection around the same time. We are unsure whether she became sick because she was tired or if she was tired because she was getting sick. The doctors have also been concerned because of her lung disease, that she will develop pulmonary hypertension, however, at this point all the tests have been negative.

We continue to pray for complete healing and restoration of both her lungs and her omphalocele. Although God has not yet answered those prayers in the way we would like, His grace has protected her from several other serious complications that she could potentially face with everything else she is going through. We are trusting God to continue to work in her little body and pour out His favor on her and to show us how He wants to use these experiences to bring glory to Him. I can say this for certain, even if no one else is impacted by her, knowing Naomi has already changed my life for the better. She has taught me more about perseverance and strength over the past few months than I had learned in my previous 34 years. I can’t wait to learn more from this beautiful daughter of mine, her testimony is going to change the world for the better.

 

Finding Joy in the Midst of Grief

~ Mandy Hawks ~ Leave a comment

Grief. It isn’t exactly the emotion I thought I would be feeling as I welcomed my twin baby girls into the world. I anticipated feeling many things: joy, awe, wonder, love, exhaustion, even fear but not grief. Never grief.

Prior to delivering my girls 13 weeks early, I had always thought of grief as something that was experienced only when someone died, not when you lost your dreams.

Yet there it was, as I stood in the NICU meeting my girls for the first time, unable to hold them and barely able to touch them. They looked so small and vulnerable and fragile, I was afraid they would break at any moment. I watched them fight for each breath, hooked up to many IVs and wires that constantly checked their vitals and dinged whenever they dropped below or shot above certain limits and I grieved. I grieved the normal birthing experience, I grieved for their health and I grieved for the dreams I had been dreaming of them for the previous 6 months.

As time has passed Grief and I have become good friends. As the girls continue to improve, I begin to dream new dreams for them and have new hopes for their development. I hope that they will tolerate eating, that they will begin to breathe without assistance, that they will grow and thrive. Overall they are doing all these things and more, but as with many things in life, we take a couple steps forward in our journey and then illness strikes or their little premature bodies realize that they aren’t quite ready to do what they have been asked and we take a couple steps back. Each time we have one of those setbacks Grief is there to meet me, but you know who also shows up? Hope, and Joy and Faith. I have come to realize that without Grief, these other emotions lose their value. Without Grief, we cannot fully know the power Hope; for it is in our distress and loss that we find the courage and the need to dream. If we never experienced deep loss, we would never have a reason to hope in or for something better. Things would always just be the way they are. It is also in grieving that we learn to have Faith that things will all work out in the end. A few months ago I came across a quote about grief that says “Grief never ends, but it changes. It is a passage, not a place to stay. Grief is not a sign of weakness, nor a lack of faith… it is the price of love.”

Psalm 30:5b (NASB) says “Weeping may last for a night, but a shout of joy comes in the morning.” This part of a l0nger verse is often used to comfort people who are grieving and it has often come to my mind in these past few months. However, whenever I picture the verse in my head I always remember it as, “Weeping may last for a night, but joy comes in the mourning,” and it is true. As I have grieved the loss of my ideas and dreams and desires for how I wanted motherhood to look, God has shown up in the midst of my mourning and given me new hopes and new dreams and shown me glimpses of His plans for my life as a wife and a mother of two amazing and beautiful girls. I experience a deep joy in knowing that all of us have been and are being changed in our grief and that this will give way to a powerful testimony of who God is and what He is able to do when we give up our own dreams and expectations.

 

Finding Joy on the Rollercoaster

~ Mandy Hawks ~ 1 Comment

I don’t like rollercoasters.

Yes, really.  I have just never seen the attraction of making a slow climb up a long incline just to feel the bottom drop out as you plunge straight down at a breakneck speed. If you manage to survive that, you are rewarded with either another slow climb followed by a quick drop or thrown completely upside down. This happens over and over for several minutes before things finally even out and you slow to a stop bewildered and sick to your stomach.

My friends and family have been trying to get me to ride rollercoasters for years, but I’ve always declined, “You’ll never catch me on one of those things!” But what’s that saying, “If you want to make God laugh, tell him your plans?” For 34 years I have been successful at avoiding rollercoasters, and then suddenly I found myself the mother of not one, but two babies in the NICU.

While I was recovering in the hospital after giving birth 13 weeks early, one of my doctors warned my husband and I that there would be good days and bad days and that it would feel like we were on a rollercoaster. I didn’t believe her. I was sure that with all the people all over the world praying for my babies, we were going to be the exception. I just knew that Hannah and Naomi would sail through the NICU without a single setback or issue.

Boy was I wrong….

At first it seemed that my confidence in my daughters’ abilities was spot on. They were not requiring a lot of oxygen and each day the report was that they were doing well. Our confidence in the idea that we were the exception grew. Even when faced with a doctor who seemed keen to focus on the negative aspects of what we could face during our time in the NICU, we continued to see the girls doing amazing things. After two successful surgeries to fix arteries in their hearts, we were able to start weaning Hannah off the ventilator and start a continuous drip of food. Naomi’s lungs are too sick to come off the ventilator but they were able to start feeds. Again, we got excited because they were handling everything so well.

Then everything changed.

Both girls started showing signs of being unable to tolerate their feeds and then showed signs of infection. Doctors made the decision to stop feeds and put Hannah back on the ventilator. After several weeks of improvements we were back to where we started. It was difficult to accept but once she was well enough they took her off the ventilator and she has sailed through to the final step before she’s able to breathe on her own.  Naomi is still on the ventilator and still struggling with breathing and with eating. She has had a couple of infections which luckily are localized to her breathing tube and not widespread.

It’s difficult going to visit them and  not knowing what situation we are walking into. Are the girls having a good day or are they struggling? Lately it seems like we have had more days of struggles and difficulties than we have had good days. Most of the time I feel like I am able to stay positive even in the midst of the low points. Other days I feel helpless or angry about the situation and I don’t handle the stress very well. But always, I have hope. I know that even though we are stuck on this slow, scary rollercoaster with all its peaks and valleys and crazy loops, God is in control of the ride.  And because He is in control, I know that ultimately everything is going to be ok.

Welcome!

~ Mandy Hawks ~ 5 Comments

Hello and welcome to Joyful in the Midst.
I knew that when I became a mom my life would change and I had this idea in my head of how things would go; I’d give birth to two beautiful and healthy girls at 40 weeks and we’d all live happily ever after, but you know what they say: “If you want to make God laugh. tell Him your plans.” God definitely had other plans. 7 weeks ago my husband and I welcomed our twin daughters into the world, they were 13 weeks early. They are currently undergoing care in the NICU and each day is a rollercoaster. In general we have more good days than bad ones and the girls have proven they are both fighters, but there is still a long road ahead of us.  This experience is one of the toughest and s things I have ever lived through in my entire life, but somehow, through it all, I am experiencing joy.

Seems insane right? How is it possible to experience joy at the exact same time as crippling fear?  I don’t know how it works, but whenever I stop to assess how I am feeling in a given situation, I can often sense joy in the background. It sits underneath my other emotions waiting to be brought to the surface. It’s a conscious choice that I have to make in each of those moments though: Choose fear or choose joy. It’s important to make the distinction that joy is different than happiness, you don’t have to be happy to experience joy.  Kay Warren once described joy as “the settled assurance that God is in control of all the details of my life, the quiet confidence that ultimately everything is going to be alright, and the determined choice to praise God in every situation.”  This means that whatever is going on in my life, whatever else I am feeling or experiencing, I can experience joy.  Don’t get me wrong, this is way easier said than done. More often than not, when I am in the middle of an emotionally charged situation I don’t stop to assess my feelings, I simply choose to focus on the fear or the pain or the grief but, after a while, I remember that God is in control of every little detail and when I put my attention on that, I am learning that it’s possible to find joy in the midst.