Catching Up

My baby is now 2 years old. How is that possible? Wasn't it just a few months ago I was in the hospital for 5 weeks trying to keep him growing safely inside me? What a blessing it is that he is healthy and growing up. All those fears and tears seem so long ago at times. Many thanks to all of you who prayed for this child during his pregnancy!

Catching up... Wow, it has been so long since I have blogged on a regular basis. Not that I am not writing blog posts in my head all the time! I wish I could just think them and they would appear! My life has radically changed in the last two years. Not just having another baby and all that this entails, but my overall health has declined. So many doctors appointments, specialists, tests, blood work, a surgical muscle biopsy, medication trials, MRI's, EKG's and ECHO's. Add to that an overnight at the hospital about a month ago when I couldn't stand up without my heart rate going from normal to 145 bpm and then I would faint.

What is wrong with me? That, dear readers, is the million dollar question. I was blessed with two great specialist this summer: a cardiologist and a neurologist. We think we have finally figured out, with medication, how to keep my current heart problems under control. Diagnosis is POTS. But the neurological stuff is still a work in progress. What we know is that I have a neuromuscular disease. What we don't know is which one. The "episode's" I get seem a lot like MS, but my brain MRI was normal. I have a lot of the symptoms of an adult onset Muscular Dystrophy. But, my neurologist doesn't have enough information yet to be able to truly assign that as my "root" disease either. While we continue to search for a diagnosis, we are also pursing the right combination of medications and supplements to improve quality of life.

"You look fine!" (Please watch this short video) This is something I hear a lot. Of course, on the really bad days no one sees me... I'm in bed for days at a time. Most days I am in a lot of pain. Lately, it is my arms, hands, left hip and back. My hands are weak and I can't do much with them anymore (like cutting up things for meals or opening jars). Typing can cause pain if I don't already have some pain meds in me. Some days I have extreme fatigue along with the pain. And some days my brain doesn't work right: I can't think of the words I need to speak, or things are really foggy, etc. I don't sleep well as pain wakes me up a lot.

This is certainly a new journey for me, my husband and our family. Each day can be so different for me. It is hard to make plans because I don't know how I will feel. I fight discouragement and during really bad days, despair. And yet, my hope is in the Lord! He is my Strong Tower! He is my Help in this troubled time!

I never like to talk about my health or what is going on. I have tried to keep it kind of under the radar, hoping we would find some answers, some treatments and be done with this journey sooner than later. I can't deny any longer what our current reality is. My journey of motherhood, homeschooling and even being a wife has changed. I am having to find new ways to make things "work" for us. I am having to "let go" of many things I used to do and still want to do. I am learning a new level of contentment where God has me right now.

No pity party here, friends! Let us all encourage one another to love and good works whatever our circumstances are! I hope to be able to post more about how I/we are finding new ways to do things, large family and all, in sickness and in health. Maybe this will also encourage others in their daily struggles.

My baby is 15 months old today!

Here is my cutie boy, Liam, taken in Dec. at 14 months of age. Sorry so long since an update. Life it full and busy and good!

Liam is 8 months old!

3 months old today!

2 months old

Liam turned 2 months on Christmas day. Cute "first Christmas" outfit was a gift from oldest brother Chris and his wife, Jessica. Don't you just love the double chin and the cute hat?

Pic taken today in his Christmas gift... another bear cub outfit!

He had his 2 month well child visit and weighed 10 lbs 12 oz and 23 inches long. Woo hoo!

Manna and Grace

Life goes on. Baby Liam is doing better and is gaining weight (up to 8 lbs 3 oz), has finally passed his "due date" and is learning to nurse, though not great at it yet. My wonderful hubby went back to work today. Yikes! Which means, I am trying to figure out how to do all that we have been doing together, on my own. Like the middle of the night feedings: try to nurse him, give him a supplemental bottle and then pump. And, yesterday I woke up with a plugged milk duct. (yes I know what to do about these, have been doing it all, and started some lecithin last night, which seems to be helping the most) I tend to get more plugged ducts when I am doing "too much". This is hard on a mom with 13 kids, because there is so much to do... or could be getting done.

Advice to myself today:

1. Manna and grace- there is enough for today, stop looking at tomorrow, the more I look at tomorrow and get uptight, discouraged and overwhelmed by all the tomorrows, the more of what I have today turns wormy, just like the manna did when the Israelites tried to keep some manna for the next day. Yuck. God gives us enough manna/grace for what we need TODAY.

2. To-do list - I love lists. List help me feel like I have my thoughts organized and I can keep "score" of all I have accomplished. I was feeling discouraged about the lack of being able to even write a to-do list, let alone get "anything" done. God spoke to me this morning about re-thinking this. So, I am going to focus on what I have done today, instead of what I have not done. I got a shower today! Woo hoo! I am keeping the baby fed! Go team! I have a plan for dinner and got the chicken out to defrost. Yippee! Yes, there are so many things I want to also get done, but just can't. Doesn't mean I ( or anyone else out there going through a rough time) am not accomplishing anything. Because I am, and so are you. Just maybe not up to our expectations. Remember #1.

3. Drink more water and rest - These have to go on what I am accomplishing today, cause a sick momma not only feels crummy and in pain (plugged milk duct) but she really can't get even the basics done if she is sick in bed. My hubby keeps reminding me that my main job right now is to make milk for Liam and feed him... which requires drinking lots of water and resting. I can WISH it were easier, but that won't make it so.

Hang in there with me ladies!

Life as we know it right now

We just got home from 24 hours at Emmanuel Children's Hospital with Liam. He had gone downhill fast with sleeping and not eating. It was scary. They ran a bunch of tests and nothing was found to be "wrong", so he isn't sick, just being a preemie. He seems to be perking up a bit, but still is going to want to sleep over eat, which can be pretty typical for preemies they say. We are going to have to work pretty hard around the clock to keep him eating every 3 hours even if he won't wake up. It is all bottles with an easy flow nipple for now, just to get food into him so he will get the calories he needs without having to work and spend his little bit of energy on nursing, etc. The doctors are saying that things may not really turn around till Liam gets past his due date (11/17) and gets to gaining past his birth weight. We are supplementing with high calorie formula or adding formula to pumped milk to make it higher calorie, which should also help Liam.

Please pray for us. Hubby and I are wiped out (hubs stayed at the hospital till about 11 pm last night and I spent the night with Liam in the hospital). My milk supply went down with Liam not nursing (I'm pumping again, trying to get in 8 pumpings a day) and I had/have a stomach bug that is not helping how I am feeling. I am so ready for life to be just slightly "normal". My emotions are being hit pretty hard.

And, please pray for Liam, that he will be more wakeful at the times he needs to eat, will gain weight and generally improve so that we can work back to nursing again (and that my milk supply will build up again).

Thank you for your faithful prayer support!


These pics were taken by our friend Paul last week, I think when Liam was 5 or 6 days old. Our little guy is sure cute!

Joy overflowing!

Praise God, I was able to come home to my family yesterday, after 5.5 weeks in the hospital!

Better yet, we were able to bring Liam home with us yesterday and didn't have to leave him behind in the NICU when I was discharged. This is a tremendous answer to prayer and quite a surprise to Liam's siblings when they saw he was in the car seat in daddy's arms after I walked in the door. What a joyous reunion!











These are all the pics I have so far this morning. It was a bit of a rough night. Have to understand that yesterday, at 4 days old, was the longest time we have had Liam with us. We are still getting to know each other. He is doing really well, and has even nursed at every feeding, better and better, another wonder after he hasn't nursed before this, being in the NICU. My milk is coming in, though a little slowly... another praise!

Just for clarification, Liam is still breathing faster than he should, but I convinced his doctor yesterday that if that was the only reason for him to stay in the NICU, it wasn't a very good reason (Okay, I didn't say it like that, but you get the idea). His oxygen sats are great and he isn't working or struggling to breath, so as long as he passed his car seat test yesterday and would eat well (from a bottle) and see's our pediatrician on Friday, the doctor agreed to let him go home with us. Woo hoo!

I cannot tell you how wonderful not leaving him behind is/was! I finally feel like a new mama and able to start enjoying getting to know my new baby.

I am also overjoyed to be home with my other children and husband. It is like coming awake after a long nightmare. Praise be to God for bringing us through this very hard time and bringing us all back together again! Thank you all for your many prayers on our behalf! God has surely heard all our prayers (and my many tears) and moved on our behalf!

Update

I'm sorry for not updating sooner. Actually I haven't talked to Jerri today so I'm not sure what the current info even is. But I will pass along what I do know.

Liam is still in the NICU, struggling with his lungs. He is still on the CPAP with forced air but no additional oxygen has been necessary. The nurses were able to feed him (via a tube to his tummy) some of Jer's colostrum that she had pumped and his tummy handled that well. However, when they tried formula (since Jerri was struggling to pump anything since her milk hadn't come in yet), it simply sat in his stomach, undigested. So please pray that Jerri's milk will come in quick and strong! A tidal wave would be nice. (Just kidding Jer!)

When I spoke to Jerri on Monday she had managed to get some sleep the night before thanks to some better drugs. I'm hoping that her sleep has only gotten better since then. It is rumored that she might be coming home today. I'll be calling her later to find out for sure.

She hasn't been able to access the Internet in her room at the hospital... that's why you've been stuck with me. That also means none of your comments have been approved for posting. Sorry! I tried to get the blog to let me but it only wants Jerri. Keep the comments coming though, she'll love reading all of them when she and the Internet have been reunited. She knows you are all praying for her and Liam and she's very thankful.

Please pray for her milk supply to be what it should be for Liam. For Liam's lungs to adjust quickly and that he can come home soon. For Jerri and Dave that they will be able to easily coordinate getting to and from the hospital after she's discharged. And of course that Jerri's c-section would heal quickly and easily also.

Thank you for your prayers. I'll update again when Jerri and I connect...unless she beats me and gets here first.