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.

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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.

 

Finding Joy in the Midst of Grief

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.