Finding Joy in the Midst of Suffering

We listen to K-love almost exclusively in our family and pretty much every morning after I drop my husband off at work and am driving to the hospital to spend some time with N, some guy named Jud Wilhite comes on and starts talking about breaking things. He quotes Charles Spurgen who said, “Whenever God means to make a man great, he first breaks him into pieces.” Wilhite goes on to reference 1 Peter where it says that we all suffer trials to purify and strengthen our faith as gold is purified and strengthened in a fire. Wilhite encourages listeners that if we are being broken it is actually a good thing and we should trust the process and not give up because God is breaking us to remake us into someone He can use to fulfill His purposes. And every morning when I hear this, I respond– out loud, “I’m pretty much as broken as I get God! Can we get to the remaking part now?”

This inevitably startles H who starts crying from the backseat as if to punctuate the idea of suffering.

Our family has endured a lot over the last 14 months and the trials just seem to keep coming. I personally haven’t been well since September with colds giving way to sinus infections and a little bit of the stomach flu thrown in for good measure. My dear husband has been battling similar illnesses, chronic migraines and difficulties at work. N has had several colds and bacterial infections on top of the larger issues with her omphalocele and lungs and we seem to be stuck in a state of limbo, unable to really move forward in her treatment.

And there is always the normal life stuff that gets tough some times:

How do I buy a month’s worth of groceries for a family of 3 with $100… 

Do we pay this bill or that bill or buy diapers?

The car is out of gas and it’s a week until pay day…

Can we get assistance?

No! You make too much money!

But our daughter….

No! You make too much money!

But we can’t pay our bills……

No! You make too much money!

The roof is caving in— literally! (and figuratively!)

I pray and pray and pray and ask and ask and ask for healing, for peace for a break and God seems silent and at times maybe even absent. I feel like I understand David when he wrote in Psalm 22;  “My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish? My God, I cry out by day, but you do not answer, by night, but I find no rest.”

But then I look back on the last 14 months.

And I see God’s provision: We have a roof over our heads and there is always food in the fridge and pantry and even though on paper the debts far outmatch the money coming in, we have managed to pay all our bills, handle the repairs,  keep gas in the car, and even paid off three credit cards and spoiled our girls for Christmas.

I see His providence: He has brought the right people into our lives at the right time to help care and nurture us through this season whether it is the nurses, doctors and social workers or unexpectedly moving us to a new church that provided new friends and support that we didn’t know we needed.

I see His grace and His unmerited favor: I spent a lot of the Christmas season feeling very angry about the situation we are in. Angry that we were spending another holiday season in the hospital, angry that I wasn’t getting my way. And that anger led to a weakening of my faith and depletion of my joy, but God showed me His grace. He gave our pastor a word at church last weekend regarding someone who had become so steeped in negativity about their situation that they had let it steal their joy and that God was calling to them to repent and to set their eyes back on Him and I sat there and wept because I knew it was me that Pastor Matthew was talking about and that God still saw me and was still calling me to Him. That He wasn’t going to let me sit in my despair and anger anymore.

I see His mercy: Throughout all of N’s illnesses she is still with us, in the community of families affected by omphaloceles there are a lot of families who aren’t able to say the same. God has not yet answered the prayer for a miraculous healing of her omphalocele or her lungs but He has kept her from having the heart defects, physical abnormalities and other life threatening issues and complications that tend to go along with having an omphalocele. He has saved her life more than once due to issues with her lungs including a mucus plug that occurred after a trach change and caused her to stop breathing completely.

And, as David goes on to say in Psalm 22: “Yet you are enthroned as the Holy One; you are the one Israel praises.In you our ancestors put their trust; they trusted and you delivered them.To you they cried out and were saved; in you they trusted and were not put to shame.”

When the Israelites called out to God to save them, He always came through. It very rarely looked the way they wanted but everything they endured ended up changing them for the better. Which has me thinking, maybe the breaking down and remaking aren’t two separate steps that we have to complete but rather being remade is a natural byproduct of submitting, in our suffering, to God and His infinite wisdom. In doing so we are allowing Him to strip away the pieces of us that are shattered and worn and sharp and harmful to us and others and what is left is who God intended us to be.

Finding Joy Again

When I first started this blog, my twin daughters had just been born 13 weeks early. One had stopped breathing shortly after being born and was down for 8 minutes before the doctors got her back and we were prepared by medical staff to expect severe brain bleeds and other severe damage from being without oxygen for so long. The other daughter was born with a large omphalocele birth defect which medical staff said would have its own share of severe complications and possible devastating genetic/chromosomal abnormalities and due to what my doctors told me was “every pregnancy complication in the book,” I learned that had barely survived their arrival. I felt blessed and lucky to be alive and that the girls were doing better than to be expected — the daughter that coded?  Despite their best efforts, the doctors could not find any brain bleeds or other significant repercussions from being technically dead for 8 minutes. Much to their dismay, they were also unable to link the other daughter’s birth defect to any larger genetic or chromosomal issues. I was without a doubt confident in the presence of God and the fact that He was at work in my life.

I decided that our story was too good not to share and decided the best way was to start a blog, though I wasn’t sure how to organize it all. Then I was inspired by a pastor friend who preached one Sunday on Joy. He quoted someone else as saying that “Joy is 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.” I thought: “That’s it! I’ll theme my blog around staying joyful and trusting God in the midst of all our circumstances as we navigate being new parents to twins who were born premature and one with a birth defect.” My whole plan for the blog was to share a bit about what was going on in our lives every week, whether it was good, bad or ugly, but always connect things back to joy, to trusting that God is in control and knowing without a doubt that everything will be alright. This would serve two purposes, sharing our story and helping me keep perspective. It was easy at first, the ideas and inspiration flowed from my heart, through my fingertips and onto the screen. Joy abounded and then intensified after we were able to bring H home after a 109 day stay in the NICU.  Our hope was that N was not too far behind but then the days began to pile up on each other.  And then she got pretty sick and we discovered just how severe the damage to her lungs was. We learned that due to the prematurity N has severe broncopulmonary displaysia and pulmonary hypoplaysia due to the omphalocele. We got several new diagnoses as well: mild pulmonary hypertension, craniosynostosis and we are constantly battling UTIs, colds and bacterial lung infections. Each new thing has made my assurance a little less settled and made home seem that much further away.

When we reached a hospital stay lasting 365 days and celebrated their first birthday in a conference room at the hospital something shifted within me. Today as I sit here on day 420 of N’s hospital stay (now transferred to the PICU) unable to be with her due to illnesses at home, while she fights off another round of her own infections which are becoming resistant to antibiotics, I am feeling less and less of that quiet confidence and more and more screaming fear. There are days and moments within days that it feels next to impossible to make the determined choice to keep praising God.

But I have to….

And I do.

Though some days I am beyond unsettled and fear has me in its grasp so tightly I can’t breathe and praising God in that place seems impossible, I still do it. I still make space to settle myself, even if just for a moment, and cling to the stillness within that knows He is in control. I still drag my weary body to the pages of the Word and read over and over of His love and that love drives out the fear and I still praise Him because He is still with us, protecting us and walking with us and with God, we only have to summon up faith the size of a mustard seed and we can say to a mountain, “move over there,” and it will obey. With God what is impossible on our own, is now possible….

And Joy is renewed.

 

Finding Joy in the Slow Work of God

As a NICU mom I often find myself wondering what God is up to. Recently I have been struggling with Him on why Naomi was born with such a severe abdominal defect and why He’s not just healing her when I know He can do it. We recently found out that the pulminologist on Naomi’s case is projecting that it will be one to three years, not months, years, before she will be able to come home with us. We also learned that the surgeons think she will be at least five years old before her omphalocele will be corrected, but she may be as old as eight. It’s such a frustrating thought that it will all take so long. I want my baby girl to be healed and whole and home already!! I walk a fine line between wanting things to happen right now, on my timeline, and knowing that God’s timing, however slow by comparison, is always best.

Earlier this week I had an epiphany about this slow work of God. At the NICU they recommended at least 3-5 minutes of tummy-time several times a day to help develop her neck, shoulder and trunk muscles so Hannah and I were doing the second of our two to three daily tummy-time sessions. While it’s not her favorite thing, she generally does pretty well with it, however, this particular time she was really upset and protesting quite a lot. She looked up at me through her tears and frustration and it was clear she wanted me to make this difficulty stop.  As Hannah protested and cried I stayed close to her and tried to comfort her but I didn’t change her situation. I watched as my timer very, very slowly counted down three minutes and as soon as the moment arrived I snatched her up and held her in my arms. I wiped away her tears and I told her I knew it was hard and that she did so good. As I sat there holding my precious daughter I realized that she couldn’t see or understand that there are long term benefits to her suffering, all she knew was that she was going through something hard and I didn’t seem to be doing anything to help her. She didn’t know that what I was putting her through was actually helping her develop muscle strength and control for something I wanted her to be able to do later.

And so it is with God… We can’t always see or understand what we are being prepared for when we are in the midst of suffering, and it often feels like God isn’t doing anything to change our circumstances. But how often do we discover that the suffering we endured was where we gained the tools we needed for some future task God wanted for us to do? It doesn’t make the suffering and difficulty any easier, and if I had my way I would still choose for instant and miraculous healing for Naomi, but I have to believe that what Naomi is going through will help her and us be able to be prepared for what God wants us to do later. And as I was with Hannah, God is never far away even when we are suffering, He’s sitting right there, waiting until just the right moment when He can snatch us up and hold us in His arms and tell us we did a good job and kiss away our tears.

Until then, I am going to try to live out the final lines of a poem written by a French philosopher and Jesuit priest by the name of Pierre Teilhard de Chardin . The poem speaks to the excruciating experience of waiting on God and ends by saying,

“Give our Lord the benefit of believing
that his hand is leading you,
and accept the anxiety of feeling yourself
in suspense and incomplete.
Above all, trust in the slow work of God.”

 

 

Finding Joy in Hannah

At the hospital that the girls were born in they play “Twinkle Twinkle Little Star” every time a baby is born. When Naomi and Hannah were born my husband and mom heard this precious song twice, followed closely by a “Code Pink.” During an earlier visit to the hospital we learned that a “Code Pink” meant that a baby was in distress.  Panic set in and we would later learn that Hannah had stopped breathing and it took the surgeons 8 minutes of working on her to bring her back. What a way to make an entrance! I had no idea that this was happening because I was still under general anesthesia for the C-section. Since I was so sick, they had to knock me out in order to do the surgery. It seems weird to think of, but I am pretty sure that God let that happen to me because He knew I wouldn’t be able to deal with finding out one of my babies wasn’t breathing. Looking back now, I can see how He has protected us from knowing too much information about the seriousness of things until after the situation was over. He knows that I am hard wired to worry myself sick, especially when it comes to health related things, and that I would not be able to get better if I knew everything.

Since she had stopped breathing for such a long period of time, when she was 3 days old Hannah developed Necrotizing Enterocolitis (NEC).  This can be extremely devastating as it is essentially when a portion of the bowel dies as the result of a perforation. The doctor’s think that she contracted it due to being non-responsive for so long when she was born. They believe this happened because when she had stopped breathing her brain stopped sending oxygen, blood and other nutrients to her bowels to try and save the organs higher in her body and it caused weakening in  area and led to the perforation. The doctors warned us that there could be some long term issues because of it, especially as too small to do much about it and they don’t really know how serious it was. It seems that it must have been relatively mild as she appears to have made a full recovery. She struggles a little bit with pooping and passing gas, possibly due to some scar tissue in her bowels, or it simply could be that she has slow motility due to being premature. A little prune juice mixed in her bottle a couple of times a day seems to help her out.

Hannah also didn’t let her breathing issues at birth keep her down. She progressed quickly through the steps between ventilation and basically breathing on her own. We did experience a few set backs early on, one due to illness and another due to needing a surgery to correct a common aortic issue in her heart, which caused her to be re-intubated for short periods of time. As of today she is on a very low amount of oxygen which she gets through a nasal cannula (two prongs that stick up her nose and dispense the oxygen).  She has even had a few days where she has been able to breathe without the assistance of oxygen however she does much better with eating and holding her temperature when she is getting some extra.

She is currently eating nearly all her food volume from a bottle (at the hospital they call this “nippling.”) and whatever she doesn’t take is given through a feeding tube. Yesterday she pulled her feeding tube out around 9:00am and proceeded to nipple 100% of her bottles between 5 am and 8pm. This is the last step that we are waiting for her to master before she can come home. She has to consistently eat 100% of her feedings and gain weight… They are telling us it wouldn’t be unreasonable to see her come home by Thursday or Friday of this week.

We are both excited and scared at the thought of having her home. It will be amazing knowing that she is well enough to not have to stay at the hospital, but it will be different learning how to parent her without the nearly constant supervision of nurses. And it will be difficult because our family will not be complete as Naomi still has a pretty long road ahead of her before she can come home. In some ways, it seems as though Hannah might be trying to stay in the hospital until Naomi can come home. Even when they were in the womb Hannah, though she is younger, has always been protective of her sister. In most ultrasounds it was difficult to see Naomi because Hannah was always covering her up, as if to say, “You want to get to Naomi, you have to go through me first!” And even now, Hannah is deeply affected that happen to Naomi. Her heart rate and blood pressure have been known to increase or drop based on things that are happening to Naomi. One of the earliest examples of this is one time when they were still pretty small and Naomi was getting an echo. Since they were still small and couldn’t regulate their own temperatures, the isolettes helped them to stay at an optimal temperature, but in order to do her echo they had to open Naomi’s bed and she got cold. As Naomi’s temperature dropped, Hannah’s blood pressure took a sudden dive and the nurses couldn’t figure out what was causing it, but as soon as Naomi’s temperature returned to normal, so did Hannah’s blood pressure.

I came up with Hannah’s name just after we decided to start infertility treatments. We had been struggling with getting pregnant for about 3 years and during that time I kept looking to the Bible to see how the women there handled infertility. I found myself relating closely to Hannah and the deep longing she felt for a child and I  began to pray a variation of her prayer, found in 1 Samuel 1 : 11. When we found out we were pregnant with twins, I knew that one of them for sure was a girl and felt strongly that she should be named Hannah. Looking further into her name, we discovered that it is a Hebrew name meaning Favor or Grace and it is clear that God has granted her His favor and His. He has brought her through many trials and since she is still a small baby He has done this without her doing anything or being able to do anything to earn it or save herself. What an amazing picture of God’s love for His kids!!

I often wonder if we have a future worship leader on our hands; she loves to be sung to and if you sing worship songs she has been known to raise up one arm as if she is praising God. Either way, I cannot wait to see how she continues to teach others about God’s grace and favor as she keeps growing and developing.

Finding Joy in the NICU

This week’s blog post was originally going to focus on our little Hannah and her journey so far, and then I realized that today they have reached the milestone of 40 weeks corrected which means they are full term babies. This coming Wednesday, February 17, 2016 they will be 3 months actual which means we have spent nearly 90 days in the NICU, so I thought I would share the top 5 things I have learned so far.

 

  1. I learned how to breathe. Breathing is the most natural reflex in the human body. Most of us don’t have to think about breathing, our bodies just make it happen. In Naomi and Hannah’s case, they were born before breathing became a natural thing their bodies did. They didn’t get to practice like full term babies do in the womb, they had to teach themselves. I don’t know how many of you have had to watch your child struggle for each breath they take,, but it’s not something I would wish on anyone. There were many times when I would be standing there watching them struggle to get oxygen into their bodies and find myself trying to breathe for them. I would hold them and find myself taking deep, slow breaths trying to get them to catch on and breathe with me. I wished that they could just rely on me to be their source of oxygen, and it got me thinking about how God must feel towards us when we go through hard things in life and it feels like the wind is knocked out of us and we can’t breathe. I wondered how much more He longs to be the source of our breath.The Bible tells us that God is source of everything (Gen 1:1), and that we live and move and have our being in Him (Acts 17:28). There is a song by a Christian artist named Johnny Diaz, called Breathe and the chorus goes: “Breathe, just breathe. Come and rest at My feet. And be, just be. Chaos calls but all you really need is to just breathe.” God has become my source, the place I turn to when I feel like I cannot breathe and He gives me rest and He just holds me and reminds me of His love for me and pretty soon I can breathe again.
  2. I learned to appreciate the small steps. When we arrived in the NICU there were so many things the girls needed to learn and overcome and it seemed like it would take forever for them to reach these milestones. My husband and I were very overwhelmed and it seemed impossible that they would ever go home. On my second day in the NICU one of the nurses told me, “You can’t look at the big picture, you have to take things, not even a day at a time, but moment by moment. You will drive yourself crazy otherwise.” At first that seemed counterintuitive, like I would get caught in the weeds if I just focused on every single moment. But then I realized that what she meant was that if we keep the end goal in mind then every time it seemed like the girls were taking a step back, it was more devastating. Once I learned how to just focus on how they were doing in the moment, knowing the next moment could be completely different, things got easier to cope with. And we found ourselves celebrating things we never thought we would, like the first time they had a poopy diaper or getting to wear clothes. It was amazing when we got to hold them for the first time, they were 17 days old. We have taken so many small steps but we have been so focused on those that we didn’t realize we had finally arrived at the place we never thought we would make it to, and I appreciate our journey so much more. The other day I overheard that same nurse telling a new admit a similar piece of advice as I was sitting in the rocking chair feeding Hannah, from a bottle. I missed so much before just trying to accomplish things. Now I can enjoy the process,  the small steps are what is important and worth celebrating, the end result is just that, the end.
  3. The importance of community. I have read the book of Genesis many times, so I knew that God created us to be in relationship with others but I never fully grasped the importance of community on a personal level. During my pregnancy I was put on bed rest and being the one who primarily took care of the house and cooked the meals, it put us in a difficult spot when I could no longer do those things. Without hesitation several friends and a few people from church that we didn’t know well volunteered to bring meals and even just visit with me so that I didn’t go completely crazy being confined to the house. Since the girls have been born and in the hospital we have had people continuing to help us out with meals or projects that need to be done around the house and giving us items that the girls will need. And there are several hundred people praying for us and our family.  Having all these people surround us has helped us to get through the tougher times. When in crises it helps to know that we aren’t alone.
  4. The power of prayer. God has answered so many prayers in the past 90 days, it’s almost impossible to put into words. Naomi and Hannah themselves are an answer to prayer. I prayed for them for many years and they were prayed for by so many  others before they were even conceived. Prayers have been answered every step of the way as they have continued to improve, despite doctors telling us otherwise in some cases (see “Finding Joy in Naomi”, for more about that). We have also prayed for things and  not yet seen them come about, like complete healing of Naomi’s lungs, but we keep praying and trusting and God keeps showing up.
  5. How to find Joy in the midst of circumstance. Our dear friend Sal gave a talk at church around Christmas time about the power of Joy that comes from the Lord, and it was during that sermon that I realized that even though there was some really heavy and scary stuff going on in my life I felt joy. That talk was actually part of the inspiration for this blog. Sal talked about the difference between how the world views joy (feeling of great pleasure/happiness) and how God designed joy (Knowing without a doubt that God is in control of everything and trusting that no matter what everything is going to turn out for our good, and we can choose to praise Him in every circumstance). It would be impossible for even the most positive person to feel nothing but happiness or pleasure as they watch their children fight for their lives day after day, but because of Christ living in me, I can praise God through everything we are dealing with and trust in His plans. I have no doubt that everything is going to turn out for our good. In so many ways, it already has.

“I have told you this so that my joy may be in you and that your joy may be complete.”

John 15:11

Finding Joy in Naomi

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.