Photo credit Jennifer Woodall
Photo credit Jennifer Woodall
Oldest son and his lovely wife of over 4 years ~ 12/2011
Photo credit Jennifer Woodall
"Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold the new has come!" 2 Cor. 5:17
at 6:07 PM
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.
This last one is so funny... his expression! We made red, white and blue tu-tu's for teh 4th of July and he insisted on wearing one and was having a blast dancing with it on, until this pic was taken. I think he wants to be able to deny later in life that he actually enjoyed wearing a tu-tu!
This is an easy post, since Mrs. Darling did all the writing and took the pictures. Go here to read all about it.
It was great to meet you both, my new, blogging friends! My children have been asking since the door closed behind you Friday "when are they coming back to play?" and are very disappointed we don't have something already scheduled! lol.
In other news, I've been busy getting back into the school day routine here. It is finally feeling like life is getting back to something resembling "normal". Liam is doing well, eating, sleeping, eating, sleeping... etc.
I would love to get back to blogging more regularly... but after so much time blogging only about things related to my pregnancy last year, I'm kind of brain dead about where to go from here. Can you help me out? What would you like me to write about? Do you have any questions for this mom of thirteen? Please leave your suggestions and questions in the comments area.
Have a great weekend!
Just a few pics to hold you over.... till like, I have time to blog something intelligent again...
Liam is 7 weeks old today and weighs 10 lbs. He is still not the best nurser, so we spend a lot of time doing feedings. He is getting better. Now, if my milk supply would increase too.
**note: no need to send in comments about how to increase milk supply. I have tried everything and am now on domperidone to see if it will work (only been a few days so far on it).
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!
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!
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!
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.
First of all, my info on his time of delivery was off. He was born right at 1pm. Sorry about that.
Jerri is doing well and in recovery still.
Little Man has just been taken to the NICU (4pm) as his breathing isn't as good as the doctors would like. It doesn't sound like anything huge as it took them 3 hours to decide that. I'm assuming he's just needing a bit of oxygen to keep his levels up. Please be praying that he adjusts quickly and is back with his mama, happily nursing, soon.
It's Jenny again. =0)
As I understand it, for the last 24 hrs Jerri has been having an incredible amount of stomach pain and taking strong narcotics to keep it barely under control. Most of you know her stomach has been a battle almost the entire pregnancy. The doctors decided this morning that since her stomach condition wasn't getting better that they preferred to go ahead and deliver Liam today isn't of giving him two more days of Jerri's pain meds. This way there will be less in his system that he has to deal with that might exacerbate any other issues he might have. They were going to take her in a couple hours which I assumed to mean 1pm.
So he should be here now! Praise the Lord! Still waiting to hear the news and will update you when I do. Please be praying, I know it's a little late but God knows the desires of our hearts even before we do. "Post" prayers still count!
I had waited to update you all because I wasn't sure if Jerri would be coming on here herself to do it. We didn't think to discuss it during our brief conversation and I didn't want to bother her by calling her back after I thought about it. So I apologize but I didn't want to jump the gun and steal her thunder.
Sometimes, it is all we can do.... just hang on and allow God to hold us. Monday's disappointment was pretty hard to take (pregnancy hormones thank you so much!), but I am feeling much better now. I have been blessed by visitors each day this week (thank you all!) and that has been a great encouragement and comfort to me. Thank you all for praying for me and baby, that his lungs will finish what they need for his grand entrance next week, and for my family at home, who were expecting me to come home this week.
Being told it is "just" one more week over and over again (I know everyone means well) is quite difficult when you are feeling you can't do even one more day. Not from boredom, mind you. I just miss being together with my family, being at home with them all and taking care of them. Coming to the realization, for like the millionth time in my life, that I can't do it/can't do one more day, is absolutely correct. I cannot. But, God can. All I have to "do" is yield... float, instead of struggle. This is what it truly means to "rest in God" or have the "peace of God", in any and all circumstances...right?
Hi everyone, it's Jer's sister, Jenny.
The amnio went well today. Liam is doing well but his lungs are not quite "done" so the doctors have decided to wait another week. His lungs are close enough to be ready that they won't repeat the amnio, they'll just schedule the c-section. Jerri doesn't have a date or time yet but she'll be sure to pass along the info when she does.
Keep her in your prayers, especially tonight and the next couple days. It's difficult to adjust to having another week of hospital bedrest when you thought the end might be in sight. Well, it's still in sight, just pushed a little out of reach.
We have made it to 35 weeks! Yeah! Below are the only baby bump type pics I have. We had a birthday party for our daughter, Emma, in my hospital room last night. Everything has stayed quiet in the placenta previa realm, praise the Lord! The plan is to do an amnio on Monday of next week, when I "turn" 36 weeks and if the lungs pass the test and are mature, schedule the c-section for the next day.
Lord willing the next post on here will be baby news! Praying for another week of no complications and for those lungs to be ready!
Hi everyone! Praise the Lord, baby and I have made it to 34 weeks. Today was day 16 in the hospital and things are nice and "calm".
A BIG thank you to those of you who live locally and have come out to visit me in the hospital. It always brightens my day to have visitors! And, helps that day go by faster. I know this hospital is way out of the way for most of you and that makes your visit all the more dear to me. And, those of you who bring me Starbucks, well, those are some yummy days for me to say the least. Hospital coffee is NOT a Starbucks white chocolate mocha, that is for sure!
Thanks also to those of you who have helped out making freezer meals, helping out with the children, and taking the kids to your house for a play day. All these ways of helping us blesses us so much and is helping to make this time I have been on bed rest and this extended time in the hospital bearable for the whole family.
One last thank you to those of you who have sent gifts for the baby from our registry, sent cards, sent or brought flowers to me, etc. I feel so encouraged and blessed by your gifts of love and helping us be ready for this little boys arrival!
Here is the latest news as of today, Tuesday. If things stay "calm" and there are no more bad bleeds, they will do an amnio on the 20th, the day I am 36 weeks gestation, to check on the baby's lungs. If they are deemed healthy/mature, they will deliver him by c-section on the 21st.
Plans can change in the blink of an eye, but this is what the plan is today. I believe most of the high risk doctors are on board with this plan, so that is good. There had been some talk of doing an amnio next week, but we have all talked about it and decided that giving the baby an extra week will give the baby a better chance of having his lungs ready and more developed over all.
Please continue to pray for baby and I here in the hospital. And, for David and the children at home. We now have web cams set up so I can see and talk to the children every day, which is really nice!
Lord willing, baby Liam will be born two weeks from today!