Is what Mike said when I answered the phone. They are running urine tests, blood tests, a possible spinal tap....
Monday, June 30, 2008
I got a call today from Jennifer... She and Michael took an ambulance ride to CHKD earlier this morning. His oxygen rates and heart rates were low. He's OK, but they are keeping him overnight for observation. Please pray for the family. We'll keep you updated.
Monday, June 23, 2008
It's been so wonderful to have Michael home. It's been stressful and crazy and full of the monitor sounding as he attempts to stop breathing or have a very low heart rate but I love that he's here and not in the hospital. We're starting to get into the swing of things. We finally figured out the feeding tube pump and know more of what we're doing. We have had the two older kids away at grandparents and friends' homes but I haven't experienced the having all four without Mike and no help aspect yet. I'm a little terrified of the prospect but I know over time it will become more and more familiar.
haven't completely lost my marbles yet :)
Michael is definitely more comfortable at home. He's now 7 lbs. 7 oz. I'm hoping he'll go to the doctor's tomorrow or Tuesday at the latest. Look forward to giving a good report.
In the pics, Michael is on the left and Ian is on the right.
Saturday, June 21, 2008
Thursday, June 19, 2008
Sometimes I just feel like a big fat failure. I want to give up, throw in the towel, and yell "I'm done," at the top of my lungs. Actually I usually just want to swear... a lot. Today was a bit intense. I had to suction out Michael about four times today. He really has issues of reflux. The throw-up gets lodged and then he chokes... which leads to him holding his breath or being unable to breathe.
I'm exhausted. I'm sitting on the bed and writing to just get out all the emotions of the day. I've been at the hospital since 9:30 this morning and didn't leave till 10:15 PM. We had CPR this morning which was a great review. I just hate the fact that it feels VERY necessary.
It's so hard being a mom. It's hard to know who to care for in what order. I know I just need to take it one day, one hour, one minute at a time.... but that's easier said than done. I feel overwhelmed just trying to deal with minor stuff like who's going watch the kids. I have five offers but I need to call each person and explain various things... like the fact Michael won't be picked up until tomorrow evening and I don't know how long people can watch Libby & Samuel for and then Ian on top of it. I just want things to work without having to do it :) You know what I mean? I don't want to call anyone... can everyone just please read my mind?! I mean what's up with us not all being telapathic, huh?
I know the mood I'm in right now. It's the kind of mood where my dear mom would tell me, "Honey, it will look better in the morning." I think she's right. In the morning, after a "rest" I should have better perspective... or I guess at least enough courage to brave another day.
Mike and I are memorizing the book of Ephesians. You heard me, the whole book. BUT at the end of it we get a date at Cheesecake Factory. Dinner AND Dessert! I believe hiding God's Word in my heart will serve me in this season. I need to constantly remember and dwell on TRUTH... and not on what I feel at any given moment. I am not able in my own strength. Not able to to do another thing.
Christ, sustain me. Give me strength in the midst of weakness. Help Mike too. We are stressed. We are weak. We are fragile. We are so close to the breaking point. Help us turn to you and not look to our limited selves. We thank you for loving us and choosing us and calling us Your Own! We love you and want to honor you with our lives. In Your Precious Name we pray, Amen.
Wednesday, June 18, 2008
Today was a little nutty. Just ask my mommy's helper, Alexis, if you need proof. She looked at me at one point today and said, "Jennifer, you will NOT be bored!" I think that's the truest thing I heard today :)
The home health people came by 3 times today. The first time to drop off the pump equipment. The second time to drop off the apnea monitor. The third time to give us the suction machine. A bit wild. I feel like I got a lot of training today. Tomorrow morning we go in for CPR training and then I will stay and "room-in" with Michael. It should prove to be interesting.
I brought his car seat in tonight for his car seat test. That's such a good sign. I can tell you right now that we will NOT be at church this week-end and probably not the next either. Michael can't be moved around a lot. He had a huge apnic (stop breathing) episode last night and was throwing up and choking (due to his reflux).... so we shouldn't move him during feeds and his feeds run 90 minutes on, 90 minutes off. Crazy. It was fun to snuggle him though and I look forward to him coming home.
Have to figure out what to do about cribs. Nurses highly recommend it because of his difficulties and needs and they said separate might be necessary because of Michael. Hmm... two cribs at one time.... this could get pricey. We're also probably going to need to move the rooms around.... hmmm... interesting.
Please think and pray for us. Lots of stuff needs to happen. We need to purchase some things for Michael and move things around and get all his meds straightened out. Etc. And learn how to care for him while looking after the other 3.
I might be MIA for a while......
Tuesday, June 17, 2008
...you make yourself a blizzard. Things have not been going well. Okay, they've been okay but for me they have not been well. Michael's surgery started off on the wrong note. They didn't tell us when the surgery was.... they told us they would call. We kept calling them and calling them and calling them and they still didn't know. I called at 7:30 the day of and they still didn't know. The doctors had mentioned that at the earliest it would be at 10 a.m. So with that being said I went back to bed... only to miss the vibration of my phone at 8:15..... and they started surgery 10 minutes later... not enough time to get down there... and we didn't plan on my mom arriving until 9:15... so crazy.
We get there and find out that during his surgery the balloon popped. The balloon is on the inside of his stomach helping to hold the g-tube in place. So they had to re-cut his stomach and place a new tube and balloon and then reclose him. They gave him some morphine later that day.... which led to a massive apnic episode (stopped breathing) and they had to resuscitate him... the same thing happened the next day... only they didn't have to use chest compressions that time (how comforting).... okay, I better stop oozing with sarcasm.
I am thankful that God has continued to spare Michael's life time and time again. I am also stressed out, frazzled, exhausted and overwhelmed. I didn't realize how often I say, "Jesus, help me!" until I caught Libby saying it the other day. Again and again my dependence is on Him.
Michael is supposed to come home on Friday or Saturday. They are continuing to up his feeds (increase the amount). We are getting the feeding pump tomorrow and training for the monitor later this week. We're also doing a "room-in" situation where I will stay with Michael for 6-8 hours and make sure I can handle caring for him. Unfortunately, I'm not bringing the other 3 kids with me so I don't know if it will really feel like home :) The good thing though is if there is a crisis there are nurses and doctors right there to help me. I'm planning on bringing a good book and chilling out while holding him.
Ian had his 2 month appt. today. He's gone from his birth weight and height of 5 lbs. 3 oz. and 17 and 1/4 inches to 9 lbs! 20 1/2 inches! That's some serious growth in 2 months! Dr. Scott prescribed Zantac to help him with reflux that he's been having. Dr. Scott also suggested I bring Libby in to get her checked out for allergies and nocturnal asthma. Samuel is going to get set up to see a GI (Gastro-Intestinal) specialist, ENT (ear, nose, throat), and OT (occupational therapy-with eating), and the special dentist re: malocclusion. Michael will come home on a feeding tube/pump, an apnea monitor and will need special therapy and medicine and care... his surgery for the cleft repair will be scheduled sometime when he's around 6 months.
So, there's the update. The shortcake was turned into crispy critters tonight. So we whipped out some reese's cups and made blizzards. Don't let Satan rob you of joy. Take hope. God is faithful. He will not fail us. Thank God for that.
Friday, June 13, 2008
Michael has surgery later this morning. He is getting a gastric tube put in so that we can feed him at home instead of keeping him in the hospital. The plan also is for him to come home on a monitor which will alarm if he stops breathing or has a low heart rate. I've had 3 hours of sleep the past 3 nights. I feel pretty sick... sleep deprivation yuck!
If you would pray that Michael would do well in surgery and recover well. We're also hoping that he'll get to recover at Norfolk Sentara General (where he's been) instead of at CHKD (the children's hospital).
Looking forward to giving a good report.
Wednesday, June 11, 2008
The reason I haven't been online lately is because I have absolutely NO emotional energy. I am so drained. The thought of posting on my blog has made me want to cry so I haven't. But now I'm ready. Last Friday we had a consultation with the care team about Michael. We discussed some therapy ideas to try this week for feeding but with the knowledge that surgery is the most likely option. He's going to have a gastric tube put in (a "g" tube) so basically he's coming home with a feeding tube.
He will get it removed later, after he has surgery to correct his cleft palate. He also will come home on a monitor because he keeps having brady's and apneas (low heart rate, holding breath (stop breathing)). He also struggles with severe reflux. So, my life is about to get busier and more intense.
I just talked with the surgeon's assistant tonight and the plan is for Michael to have surgery on Friday (late morning/ early afternoon). I am excited that this will bring him home in the near future but am stressed about all the implications of having a child once again on a monitor and once again needing a lot of special care. sigh. I am finding myself being constantly stripped of control. Stripped of my own desire to be independent. I am once again on my knees desperately crying out to God.
My days are so full. Full of dishes and laundry and wiping hands, faces, noses, and bottoms. Changing diapers. Oh did I mention Libby is potty trained? She is! She wears a pull-up at night and at rest times but she is doing great! So now I only have 3 in diapers... as opposed to 4!
I'm finding myself constantly having to train the kids. Train them to pick up their toys and after themselves. Training them to put their dirty clothes away, their shoes away... but more than that the training of attitudes and obedience. I'm trying to help them to learn self-control and to have a content heart... it's challenging. Especially when mommy's trying to learn these things too!
Mike's been working for my dad lately. So sometimes he works days and sometimes he works nights. He's gone tonight. From 11 p.m. - 6 a.m. Bless his heart.
Well, I'm going to try and get a little shut-eye. I'm exhausted... hmm, I wonder why? Wink, wink.
This is David's girlfriend Courtney! Isn't she beautiful?! I have so enjoyed getting to know Courtney over the last several months. She has such a beautiful spirit and is one of the most poised young women I have ever met. She truly radiates Christ's love. I am so excited to get to know her better. Hold onto her David- she's a keeper! :)
One of the reasons I'm so glad that I'm back in VA is being able to be so close to family. My dear cousin Anne recently had a little girl named Lauren. Lauren is almost 5 months old. I am so blessed to have such a dear cousin and to see her daughter grow up.
This is a picture of Anne & her husband Casey and their little girl Lauren.
I love you Anne!
My parents just celebrated their 30th anniversary this past Tuesday (June 10th). I am so thankful for their example of love and devotion and a commitment to making their marriage work! I am blessed to have them for parents and to see that they have such an amazing marriage. I am thankful that they are still in love with each other and are best friends. I look forward to Mike and I celebrating our 30th... we're just coming up on our 5th in September.
Happy Anniversary Mom and Dad!
(these were pictures I took last year on their anniversary)
Wednesday, June 04, 2008
Libby's new word of late. Twizzle. Which means twisted or braided. I think she got it from asking me what I'm eating... which was of course twizzlers. Since then she's asked for her hair to be twizzled. She saw a picture of a girl with her hair in braids and said, "Look mommy, her hair is twizzled. I want twizzly hair." She was frustrated trying to put on a shirt... "Mommy, I can't get it on, it's twizzled". The shirt was twisted.
Today she told me, "you're the best mommy ever!" Wasn't that sweet?!
Okay, I had the best birthday ever! I started celebrating it on Sunday with my family. My parents and my in-laws, who are my other parents :), as well as my brother and his girlfriend as well as my brother-in-law and his girlfriend, my aunt and uncle and cousins and grandma all came over for lunch at my house. We had marinated chicken, rice, and yummy salad... topped off with a delicious chocolate-chocolate cake. I enjoyed chatting and laughing with my family. Mike even asked people to give me encouragement... I was so touched that all my family shared something with me. I was so blessed.
Monday night Libby and i made cucpcakes for my birthday. Yellow cake mix with chocolate frosting... yummy.
My sweet love gave me my present early... a beautiful ring. It's a pearl ring with two diamonds on each side as well as a sapphire on each side. I'm not doing it justice. I love it and I'm so thankful for his love for me.
On Tuesday (yesterday the 3rd) which was my birthday I had an amazing day. I met up with some of my close girlfriends for breakfast at Baker's Crust and then out for "coffee" at Au Latte on Granby in Norfolk. I had a delicious smoothie with coconut and pineapple. I felt so blessed by my friends. It was such a treat to spend some relaxed quality time with them. One of my favorite parts of the day was just sitting on a couch and nursing Ian while my friend was nursing her son.
I then went and met up with my dear friend Michelle who has been teaching in China. We hung out for a little while and then went out for coffee and dessert. it was great catching up and being able to just see her face!
Then my husband took me out to dinner. We went shopping at Target, Babies R'Us, and Barnes and Noble. Our friends Mike and Isabella watched the kids for us! I didn't even have Ian with me. It was amazing! I just loved being able to be out with my husband. I got a new skirt and top, a book I'm already starting to read, a planner for next year, some new organic cleaner (that's safe for babies), and a nursing cover.
Talk about a great time! My dear cousin Sharon is taking me to Baker's Crust for dessert and coffee tomorrow.... it's like Birthday week!
I've just felt so overwhelmed and loved by the cards, encouragement, gifts and time spent on me.
I received amazing gifts from family and friends: money, Starbucks and Target gift cards, some books I really wanted (one on parenting and one on intimacy), cute flip-flops, a fragrance sachet, coffee cups, truffles, home-made granola, a new bag, clothes, and a nursing cover by Peanut Shell (so cute). I also have some new friends who thought of me.... I got a box of my favorite tea (english breakfast by twinnings) and some pastries with a gift card... thank you two! You're so thoughtful.
I am so blessed to have friends and family who love me. Thank you for giving me a wonderful birthday. I thank God for each of you!