Mr. Boy Smiles

Weary

The week after we found out that Mr. Boy would be born with special needs, something switched off inside of our hearts. We lost our spiritual fervor. We didn't become mad at God... we know that He is Good, He is Love. We know He does miracles and has been producing them in Mr. Boy's life all along. But it suddenly became much easier to live off of the prayers of others and not pray ourselves. We still have had peace and some joy because we feel the weight of all of your prayers for us... and can see that God has been moving and working. But we have had no desire to pray ourselves. No desire to engage in conversation with our Saviour or read his beautiful word. It was and is much, much easier to escape reality with mind-numbing activities like watching TV. It hurts too much to get on our knees and pray for our son. If we pray for him then we are opening ourselves and our hearts up; we are thinking about all his issues, we are thinking about what he is going through and therefore opening ourselves up to more pain.

With great sorrow, comes the incredible opportunity for peace, joy and growth in the place of intimacy with Christ. But to get there is scary. Emotion is involved, and we have been fleeing anything that will make us face emotion. We've chosen to feel numb instead of anything. If we can escape emotions, maybe we can forget what is going on around us. If we can watch an hour show on TV, maybe we can escape the pain and confusion and fear for that hour. The first month Mr. Boy was home, I just went through the motions of my motherly duties, while soaking my days with Mr. Boy in tv so that I do not get too emotionally attatched. The more I pray for him, the closer I get to him and the more I have to think about what he is going through and will have to go through and then I will have to be more emotionally vested and opened up to be hurt. I will have to hurt when he hurts instead of being able to shut off my heart and look the other way at whatever is captivating on the TV.  It's a very selfish move on my part, but it felt like the only way to survive.

TV is an easy fix and not a lasting one, but its the one we have been continually turning to instead of the lasting peace and joy found in a close relationship with our Heavenly Father. You can only run from the Lord for so long before weariness sets in. We've grown deeply weary and tired of running. We want to embrace our emotions, embrace our loving Father, fully engage in prayer and love for our son, and rest in the Lord's beautiful promises and engulfing love which will surely result. (Of course we've loved Mr. Boy all along, but there is a sweeter, selfless love for our son that can only be found in the place of intimacy with the Father, a kind of love only He instill in us, because it first came from HIM). It feels like we've been sitting in an immense heat, shriveling up, while all along there has been this deep, refreshing river right in front of us, waiting for us to jump in. We are just beginning to wet our toes.

Matthew 11:28-29 

   ²⁸ “Come to me, all you who are weary and burdened, and I will give you rest.²⁹ Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 

Discharged from the Hospital

We came back home last night! Mr. Boy is already doing fantastically. They pumped him full of fluids in the hospital and he felt much better. Apparently when we finally brought Mr. Boy in, he was past the point of being able to get better without hospital intervention. Scary. He wasn't showing any signs of dehydration (according to Google :) ), but we finally decided something was seriously wrong and went to the ER. They weren't going to let us go home until there was clear evidence he was growing and thriving, but he is doing so well eating here, they decided they'd let him go home and re-weigh him in a week. He is apparently eating so much that they think there is no way he isn't growing. He gained a ton of weight over the past few days in the hospital because of all the IV fluids so we'll have to see what a week at home does. David and I actually think he looks obese, hee hee, since he was just skin and bones before and we had unfortunately got used to that look on him, so now he's a bit healthier looking to the normal eye. He has not thrown up since he has been here, and has actually enjoyed eating... no fussiness or screaming or drawn out feedings. They said the reflux medicine is finally kicking in since it takes a while, and they thickened his formula in an attempt to help him keep it down. I am still pumping because once he is doing well, we will try milk once more just in case his issue was only reflux and not a milk allergy too, but we'll see. Today we brought home a content little boy! We are praying he stays that way. :)

Sanford Children's Hospital

Back to the Hospital

Last night at 12:45 am we brought Mr. Boy to the ER. He was continuing to vomit and had a crazy case of diarrhea. After confirming that Mr. Boy was very dehydrated, they admitted him to the Children's Hospital. Mr. Boy has received and kept down much needed fluids since being admitted and seems to be doing a little bit better. We are not sure how long we will be here.

thankful that baby vomit doesn't stain

Vomit, throw up, ralph, purge... whatever you may choose to call it, it stinks. Mr. Boy is now a pro at throwing up. He takes it in stride and doesn't even flinch. And we are not talking about spitting up, but fully emptying the tummy of all its contents. He threw up 7 times yesterday and 3 times today. We've been watching closely for signs of dehydration but he seems ok. Yesterday we packed up and were ready to take him to the ER several times, but every time we'd get near the door Mr. Boy would perk up and look all cute, flashing his eyelashes as if to say, "Sick? Me?" It's hard because we know that once we take him in, there is no turning back and no telling how long they will want to keep him. If Mr. Boy  doesn't get worse and we make it through the weekend, we will call Monday morning to talk to our specialists and see what they think about this throwing up episode. This isn't the first time we've been through a 24 hour stomach bug with him, but we just hope this isn't something more serious. Every little problem escalates when your child isn't growing.

Update

We weighed Mr. Boy at the hospital today and he gained an ounce since Tuesday... not encouraging, but not horrible. The Gastrointestinal Doctor thinks the reason is a combo between reflux and possibly a milk protein allergy. Hopefully reflux medicine and special formula will help out a lot and make Mr. Boy a much happier, healthier kiddo. We could all benefit from a little less screaming and vomiting in our household. I decided it's time to stop pumping...for one thing our deep freezer is absolutely full, and secondly, Mr. Boy wont be using it. I thought about selling it on the black market, but after some consideration I decided it'd be better to try and donate it somewhere. :)

Reflux

After our Dr visit yesterday, they decided Mr. Boy has reflux and prescribed him some meds. This would explain the vomiting, screaming, discomfort, irritability, etc, so hopefully the medicine works! We weighed him and he came in at 6 lbs 14 oz, which means he lost about a pound in one month since he's been home. :( Now they suggested using only special formula and no breast milk to see if that helps. They do not want to allow this to get any worse, so by Friday if he has not grown, there is a possibility they will readmit him to the hospital and hook him up to IV's. eeek!

Prayer Request For Mr. Boy's Growth

Please pray for Mr. Boy to grow. We've been going to the hospital for weight checks periodically and he just isn't growing. When we brought Mr. Boy home a month ago he was about 7 lbs 8 oz and now he is about 7 lbs 4 oz. The Dr's have done x-rays and ultrasounds and cant figure it out and we are already adding more calories to the breast milk with extra formula and that hasn't helped. Tuesday we go in for some sort of gastrointestinal test but we don't know what the next steps will be if something doesn't change. Thank you for your prayers!

Getting Better

After getting a few weeks of experience under our belts and figuring out better solutions with the Doctors for Mr. Boy's  special care, we are feeling much better about life. All the stresses that come with new parenting and Mr. Boy's medical challenges had us reeling, but after this past week we feel renewed. Last week, two of our nurses from the NICU told us they were coming over to babysit so we had to go out to dinner. Instead of trying our usual polite decline, we jumped at the opportunity and it was wonderful. It was the first night since Mr. Boy came home that we had peace and weren't constantly in fear of the next disaster. That night was a turning point as we were able to rejuvenate and gain perspective. We realized Mr. Boy's cry volume ebbs and flows to the degree of our peace. When we were stressed during diaper changes, he would scream louder and after that night we were able to have a sense of peace and calm, which made him clam and able to enjoy his new life with us much more. My mother has also been here for the week and that has been nice since we can run all kinds of errands and laugh a little. My mom has also helped get Mr. Boy's room put together: