A Scare, New Perspective and New Strategies

I don’t even know where to begin this update since so much has happened since the last time I wrote. We are now at Children’s Hospital where Vivien has been a little fighter. We almost lost her on Friday (Sept. 26th), and when we talked to the neonatologist afterwards he said that most likely, if Todd hadn’t done what he did she would have died.

We are facing more days in the hospital at least and it has definitely been an emotional roller coaster in the past few days. We have asked God so many questions and pondered so much about life and death and decisions we are making for Vivien. We have cried buckets of tears and I feel like my heart is more and more knitted to hers as I love her so much and she is so beautiful and I have hated to see her in pain.

As of today, she is stabilized and getting much better so we are grateful for this. It looks like she will be able to go back on actual breast milk in a few days and maybe come home soon after that. We are rejoicing that God is healing her and so relieved and looking to a more hopeful future.

I will back up a bit though and share about our last couple of weeks. We were both happy and scared to bring her home from the hospital on Monday (Sept 22nd) . The next few days were very full of lots of laundry, Purell, hand washing, sanitizing wipes, pumping, feeding Vivien, reuniting with our kids and trying very hard to figure out what our new normal would be. We made rules about the kids asking permission to even go into our room where Vivien was and they had to wash up and Purell all the time. Todd called me a “Purell Nazi” and I took it as a compliment.

I felt a little bit lost the first day, not knowing where to start, but we got our room set up, with the crib, pulse oximiter, drawers (thanks to Pada and Grandma Linen) for all of her medical “accessories”, NG tubes, syringes and pumping things (pole for giving her feeds through her tube and tables to put everything on) lots of purell and sanitizing wipes and her little “car bed” under her crib. Our kids enjoyed holding her and Todd loved just sitting with her during her feedings, often reading the Bible to her or putting praise music on his phone for her to listen to.

I can definitely tell you that I felt overwhelmed to say the least. We had several doctor appointments and I literally felt like from the moment I got up in the morning until I went to bed, I was running on adrenaline, thinking about what had to happen next, between putting lots of loads of laundry in (thankfully my kids sort and put it all away), pumping, feeding, washing everything between each pumping and feeding, packing for the trips to the doctor etc and making sure things were going well with our other kids. At night we were also up pumping and feeding. I was getting an average of about 4 or 5 hrs sleep a night, By Thursday afternoon I was struggling a bit wondering how this was going to be sustainable. I truly felt like I hardly had one minute of downtime. In addition to this, my mom or Todd’s mom were also helping out and it was truly hard to understand how with so many helpers, I was still feeling so overwhelmed. Parents of kids with T-18 on our websites have been very encouraging in letting us know that we would eventually settle into a “new normal” and it wasn’t going to always be like this. And in between doing all these things, I felt like I wasn’t spending much time with Vivien as Todd often did during her feedings and changing, charting her food, diapers, temperature etc.

Thursday night was very difficult and I slept only a couple hours because Vivien was having some trouble “desating” which means that her oxygen saturation on her pulse ox (oximiter) was getting low and we needed to slightly wake her up to make sure she was breathing well. We had to do this about every 15 minutes, and it was always worse during her feedings. She had had a little diarrhea but we didn’t think too much of it as after that she had some full diapers with solids that were ok. Wednesday we met with the pediatrician and Thursday we’d also met with her cardiologist who had said that her heart was starting to shunt blood to the lungs and wanted to start her on Lasix. Both Todd and I were feeling discouraged by being up all night and were hoping that this desating was not going to be normal. We were worried about her going downhill, but looking back on it now, we understand more of what was going on and realize now that it was not normal at all. We were worried about apnea, but it was a totally different problem.

Friday morning, she was desating even worse during her feedings and just wasn’t doing well. We usually only keep the pulse ox on at night, but we decided to keep it on her during the day as she kept desating. We had an appointment with her pediatrician for a weight check. Todd ran over to Medic 5 to get a bag valve mask for Vivien, just in case.

We started feeding her right before the appointment, but she kept desatng and we were getting too close to time to go so we decided to go ahead and take her and finish feeding there. We kept the pulse ox on her and I realized that I needed to sit in the back with her to wake her and stimulate her as she kept desating in her little car bed. But we only made it a little ways onto the on-ramp of the freeway when we realized we had to get her out of the car bed as she was getting dangerously low. Todd pulled over and pulled her out, grabbed the bag valve mask and tried to get her to wake up. She was obviously going in and out of consciousness. She’d come out of her desaturation but every time we’d try to lay her down again, her numbers would go dangerously low.

Todd said we should probably drive to Children’s Hospital, but quickly changed his mind to calling 911 and going in the medic unit. She kept going lower and lower and he kept giving her breaths with the bag valve mask. It was so scary to watch the numbers go down and her eyes roll back in her head. A healthy saturation is 96-100 and Vivien’s normal is in the upper 80’s to the 90’s because of her heart condition. It went slowly lower and lower until it reached 14. I was crying softly and praying and wishing I could do more. It was terrible to watch and feel so helpless.

God is always good and kind to us however, and sent our friends Dave and Tiffany (my wonderful prayer warrior friend) who just “happened” to be getting onto the freeway the same time we did. They stopped and offered to help, but Todd told them the medics were coming and they went on their way, but I was so glad to see their faces for a moment and know we now had people praying. Vivien stabilized a little on the way to Children’s Hospital and as long as Todd kept her upright and awake she was doing ok.

When we arrived there were about 15 people there to greet us and immediately began working on her. She had tubes and leads and all sorts of things connecting her. They were able to stabilize her and talk about the next steps.

Over the next couple of days we had to watch and wait. At first they had a very hard time figuring out what was going on with her. What Todd and I had both thought respiratory, ended up being a bacterial infection in her gut, that manifested itself with her desating. It is easier to look back in hindsight but those first couple of days were all question marks. They knew something was wrong with her stomach, but weren’t sure if it was something very dangerous called NEC, or a twisted intestine (which could mean surgery) or merely a bug that she will get over and be ok with. Thankfully we know now that it is a very bad bacterial infection that seems to be getting better with gut rest and antibiotics. Because of T-18, her immune system is already compromised and so this hit her hard.

3rd day in the Hospital - Stabilized, pale and with IV

Those first couple of days were very dark. I had gotten maybe one or two hours sleep on Thursday night and I felt like I’d been running on adrenaline all week anyway. I also felt heavy with guilt for not seeing this sooner and I hated seeing her in pain. This was one of the things that I was most afraid of in reading people’s stories on Facebook groups about their child with T-18. Often things would come up and because of their child’s inability to communicate exactly where things hurt or what was going on, they would end up with false diagnoses or not catching things. For instance Vivien kept throwing up yellow liquid, but we had given her new lasix medicine for her heart that morning and I thought that it was her milk mixed with the yellowish tinge of the liquid. In addition to this, all of my babies have been spitters and so I didn’t think a lot of it. She’d had a small amount of diarrhea, but had more solid stool after that. When we got there we found out that her bowels were distended. I felt sick that we hadn’t caught this sooner and I hated watching her suffer. She also doesn’t cry much and even during this sickness, she didn’t cry much.

There were also thoughts of heaven. Honestly, this may sound terrible, but I just wanted her to go to heaven and be cared for by Jesus. It is very difficult to admit but I felt like since I was so incapable in caring for her, despite my efforts and she was in pain, I just felt that heaven would be a happier place for her and I wanted her to go there. I was so exhausted from just the few days I’d cared for her and was struggling with heavy guilt, wondering what I’d done wrong. We didn’t know if what she had was life threatening. Even after we found out that it was most likely a bacterial infection, all I could think about was if I hadn’t washed hands enough or made things sanitary enough for her. I could hardly stop from crying the first few days here. The doctor has assured us that it wasn’t what we did and that often you never know where this kind of infection comes from. But I still struggled.

It was amazing to think that if we hadn’t been so insistent on getting the pulse ox that she would have died. We would have put her in the car bed, gone to the appointment, not realizing that she was desating and just assuming that she was asleep. In addition to this, we’d talked about going to get the bag valve mask from Medic 5 on the way to the doctor, but Todd had decided to run and get it earlier. Again, if we’d waited, he wouldn’t have had that to give her breaths. I felt like I just couldn’t believe that she could have gotten so near death without us catching it and I just felt so horrible and responsible. Every time I held her or looked at her, I would cry. I was struggling with seeing that Jesus was leading us in these things and was still in control...

Over the last few days however Jesus has brought me comfort in several ways. He brought me to Ps 127 and I have been pondering it. I am familiar with the first couple of verses:

Unless the Lord builds the house,
those who build it labor in vain.
Unless the Lord watches over the city,
the watchman stays awake in vain.
2 It is in vain that you rise up early
and go late to rest,
eating the bread of anxious toil;
for he gives to his beloved sleep.

And I am familiar with the last 3 as well:

3 Behold, children are a heritage from the Lord,
the fruit of the womb a reward.
4 Like arrows in the hand of a warrior
are the children of one's youth.
5 Blessed is the man
who fills his quiver with them!
He shall not be put to shame
when he speaks with his enemies in the gate.

But though I have read it many times, I never realized that those two passages actually go together. Vivien and my other children are my heritage, my reward, and I am so blessed to have them. I love and enjoy them so much and do feel so incredibly happy and pleased with them. But when I came home from the hospital with Vivien, I feel like Jesus pointed out to me that I was striving. I was rising early, going to bed late and I was toiling anxiously. I was trying to “build” my house in my own strength. I felt like I was juggling a whole bunch of balls in the air and if I dropped any it could mean life or death for Vivien. I was taking it all on my shoulders and hoping that by my own effort I could somehow keep her healthy. I struggled with so much fear in coming home with her that for those few days I was pushing myself to the limit physically and emotionally, trying to keep it all together. I was guarding the door to our room, shooing the kids out, making sure they washed up to their elbows and changed into clean clothes before touching her. I was making runs to the store buying more hand towels to change them out, lots of antibacterial soap, purell and disinfectant wipes. I was sanitizing everything I touched when pumping and doing mounds of laundry. I was staying up late trying to get it all done. She’d only been home for a few days and I was exhausted.

I feel like Jesus brought me to this passage and gently asked me, “Did it work? Were you able to keep her safe by all of your toil and efforts and sanitizing?” It was obvious to me that she still developed this infection, despite my best efforts. It says, “Unless the Lord builds the house.” My children are HIS. My home is HIS home. He is the builder, He is the sustainer. He wants me to rest in HIM. He gives his beloved sleep. The “house” is the children that follow. Every harried mother needs to put these verses in context and realize that God has got this. It isn’t all on me. I can rest in His love for Vivien. He loves her more than I do. All my sanitizing didn’t keep her from getting an infection. Jesus is still in control and she is getting better, but it is not because of my efforts.

Please hear me. I am NOT saying that Jesus brought this on Vivien or that somehow this is my consequence for striving. Jesus loves Vivien and I know that He is caring for her. He has reminded me several times that He gives grace to me when I am sick, and He can give grace to her. He loves her more than I do. And He is healing her. But what I AM saying is that He is gently showing me that all of my efforts and toil and fear need to be laid on His shoulders. What the enemy means for evil (sickness), the Holy Spirit uses to say that when we take Vivien home again; my attitude needs to be different. I may be doing some of the same things (I am still planning on being very sanitary) but my outlook cannot be one of fear but of trust. It cannot be one of striving, but of rest in Him. It cannot be one of being anxiously toiling and believing that it’s all on me, but in holding Vivien (and my whole household) out to Him with open hands and saying, “I trust You, I rest in You, You have this Jesus.”

Another comfort came through the neonatologist who has been overseeing a lot of Vivien’s care. At one point, he came into our room and chatted with us about his philosophy about babies and children with T-18. If we had tried to tell someone our own philosophy about T-18, life and genetic disorders, loving Vivien in a very wise thought out and articulate way, we couldn’t have said it better than he did. He talked about the life and value that these babies and children add to the world, and to their families. He talked about how much love they have to give and receive and how we do not know the outcome of their lives or how long they will live, so we can give them the same care and help that we’d give any child who needed it. While we know now that Vivien is making progress and getting better, at the beginning we didn’t know if this was going to be the end of Vivien’s life, or merely a hiccup at the beginning. We don’t know if she will live many years from now and we will look back on this as a difficult beginning, in which we are so glad that we gave her the care she needed. He articulately explained that however long they live, we can enjoy them and they can add value to our world.

Todd and I have thought so much about Vivien’s life. There are some with T-18 who feel like we need to do anything we can to keep our kids alive and stand for life, and others who feel like it’s best to only give comfort care, without aggressive life saving measures. We have come to the conclusion that either way it would be easy to strive to “play God” or have the attitude that somehow we need to be in control. We want to hold Vivien with an open hand that says we want to work with God. If it is her time to go, we don’t want her to suffer by keeping her here at all costs to satisfy our desire to have her to ourselves. We know that heaven is a happy beautiful place. At the same time, we want to fight for her life, enjoy her if He wants us to and give her a chance to live and love and glorify God here on earth. We know that her life has purpose, no matter how long or short it may be and we want her to live out the purpose.

In this case, those first couple of days after she almost died it is easy to question yourself. If we had it to do over again, we of course wouldn’t choose to let her die, but we still questioned ourselves, in those first couple days, wondering if we’d kept her alive just to watch her suffer. Now that she is getting better and doing well, of course we are glad that this looks like it is going to be the “hiccup” not the end of life sickness. It is easier to see how the enemy was trying to discourage us and give us guilt and fear. We are praying for greater faith and trust in the Holy Spirit. We don’t know what the future holds and we are glad that He continues to lead us.

My dear friend Christy asked God for a Scripture for me and the one that she gave me wasn’t one I would have thought of for a sick baby, but again, what the enemy means for evil, God always redeems for those who love Him. “19 Or do you not know that your body is a temple of the Holy Spirit within you, whom you have from God? You are not your own, 20 for you were bought with a price. So glorify God in your body.”. We have dedicated Vivien to Jesus. We can trust that even her little body can be His temple (John the Baptist was filled with the Holy Spirit from his mother’s womb. We have prayed this for Vivien). She can glorify God through her life. He is continuing to heal her of this infection and we trust that if He does, she can glorify Him and fulfill her purpose in her life and we can enjoy her longer.

The book, “Beautiful Battlefields” given to me by my friend, continues to counsel me as well. She talks about “strategies” that God gives us in our battles and cites Gideon, Jehosophat and Joshua as having different strategies and methods for each battle – but all in obedience. I want my new strategy to be one in which I am still diligent, but not anxiously striving. To rest in Jesus’s sovereignty and not my own effort. Please pray with me that I will rest in His peace for our family and for Vivien and for her future. Again, I know that He is trustworthy.

In addition to this, Christine Caine writes, “Some people think that the promised land will devour them, others think it will nourish them. Perspective is everything. (Num 13:30-31.)” When God gives us good things, the enemy wants us to believe that they are not good for us, and that they are going to consume us instead of nourish us. I know that my perspective on my home life, and kids needs to continue to come from God. The feelings of being overwhelmed, fear and anxiety that I felt in taking Vivien home – the busy-ness in caring for all of our kids and making sure Vivien is ok – need to change. My kids and home is my joy and reward. I truly do enjoy them so much. They are part of God’s gifts to me – my promised land. Those of you who know us well know that God gave Todd and I as singles Deut 30 and 11 as promises about our future family – our promised land. The gift of my family is from Him. I need to see that it will not “devour”. You are joining me on this journey. Just reading my last blogpost is evidence that I need His grace and peace instead of fear. I may be doing some of the same things I did in those first few days at home as far as caring for Vivien and our kids (hopefully with a little more sleep) but with a different heart, outlook and perspective.

Today!  Alert and on the mend....

In sitting here looking at our little girl, we are so grateful and relieved that she is doing better. She has no more blood or tissue in her stool, her bile is not green but yellow. She is more alert with her wide eyes, more herself, her color is good and we are so glad for the good care we are getting here. Her infection numbers are down and hopefully we can bring her home next week. Please continue to pray with us for her transition to breastmilk again (most likely Friday) as she has been fed intravenously. Please pray also for her transition home, for peace and joy and health for all of us, especially at this time of year. Thank you for your continued love and prayers!