Wednesday, July 29, 2009
Quotable quotes from Carter Magee
"Mommy, you know, cows make milk. And you've turned into a cow."
Then in usual Carter-fashion, he went back to playing with his toys while I was left to laugh over his latest revelation. Perhaps he's watched me pump one too many times...
And this just in... Carter wanted to sleep with his daddy tonight, so Jason told him go on into our room. Carter said he wanted to watch TV. Jason said, "I have a better idea, let's watch the backs of our eyelids." Carter jumped up and down and said "I love that show Daddy!!" Ah, to be 3 years old again.
Charlie's first pedi appointment
She doesn't think we need to follow up with the pulmonologist at this point, but just to be on the safe side, she did ask us to make an appointment with a pediatric eye specialist. She is treating him like a premature baby since he was on the ventilator, so that's why she recommended the eye doc. In her words, she isn't worried, but wants to be "anal" about making sure everything is good with Charlie, and we appreciate that. She wants to follow his development very closely over the next year or two to make sure there are no delays with reaching developmental milestones, but again, she's not overly concerned, just being cautious. She doesn't believe he was on the vents and oxygen long enough to cause any major delays (neither did his NICU docs), but we'd all rather be safe.
Last night we actually got him to sleep a few hours at a time in his basinette. And my sweet hubby heard him crying at 4 a.m., so he came into the living room to take over and sent me to bed!!! It was so nice to get three hours of sleep in my own bed instead of the couch.
My sister-in-law Shashe is back in town after being gone to visit her hubby's family in Wisconsin for 10 days. She hasn't seen Charlie since he was hooked up to all the tubes and wires, so I can't wait for her to come over today and see her nephew. My brother and sis-in-law will be here from San Antonio next week for a visit. He came up and surprised us for Charlie's birth, but he never got to see the baby since Charlie was sent to the NICU so quickly. They have been checking on Charlie every day, so I know I will have to wrestle Aunt Lala for the baby once they get here:-)
Monday, July 27, 2009
Charlie is happy to be home
Griffin is a model big brother. He loves to hold Charlie, and he helps with every diaper change. Today, he restocked diapers for me, and held him while I made our lunch. Carter is mildly interested in Charlie and still calls him "New Baby". As I remember, Griffin wasn't too interested in Carter when he was born, so Carter's reaction doesn't surprise me too much.
Charlie has his first appointment with his pediatrician tomorrow. I'm anxious to see how much he weighs so we'll know if the breast feeding is going as well as it seems to be to me. He weighed 8.2 pounds when we left the hospital on Saturday. Hopefully, he's maintained his weight or gained a few ounces. I promise I'll update tomorrow with news from his appointment.
Charlie got his first bath at home tonight, and he hated every minute of it. I think all newborns cry during their baths, so we didn't take it personally. We worked over his scaly feet, and they look much better now!!
The house still looks like a bomb went off in it, and I never did get a shower today, but hey, that's par for the course with a newborn. And I'm thrilled to have him home. I'd much rather be sleep-deprived wearing yesterday's clothes as a result of taking care of him then from being at the hospital.
Saturday, July 25, 2009
Calm down everyone...Charlie is GREAT!!!
So, I got there this morning at 10:30 a.m. and guess what -- he ate like a champ all night and his doc said he was ready to go home!! Jason and I brought Charlie home about 2 p.m. Jason is giving him a bottle of breast milk right now, and all is well at our home today with Charlie here. It's been a looonnnggg 12 days, but we are finally done with the hospital. His doc says he will be a totally normal baby with no side effects or future issues due to his PPHN. We have no docs we need to follow up with other then his pediatrician. Of course, I'm going to be a fanatic about visitors...everyone will have to wash from head to toe before touching baby Charlie!!
Two of his nurses stopped by to tell him goodbye, and they told me everyone was talking about how quickly he recovered. He was the talk of the NICU today. We are so thankful to all the docs and nurses at Cook Children's for the care he received. Under God's guiding hands, they took a very sick baby and made him well again. Thank you for all your prayers for baby Charlie. This is proof that prayer does work.
I probably won't be posting everyday now, but I promise I will update my blog regularly with Charlie (as well as Griffin and Carter) stories. We'll be ready to introduce Charlie to everyone soon, For now, we just need to catch our breath and get back into a routine with our family since things have been so crazy lately.
We love you all,
Jason, Jill, Griffin, Carter and Charlie
Friday, July 24, 2009
More progress for Charlie
He is doing a pretty good job with taking the bottle and nursing, but we did have to threaten him with the feeding tube this afternoon to make sure he ate enough to keep his doc happy. The only thing keeping him at Cook Children's right now is the little bit of oxygen he's still on. If we can wean him off the O2 and he does well for at least 24 hours without it, his doc will probably discharge him!!!
Please pray that he tolerates the O2 weaning process on Friday and continues to feed well. If he does these things, we could possibly have him home this weekend. God is GOOD. Our boys are indeed the children He has blessed us with.
Thursday, July 23, 2009
Ephesians 3:20
I never imagined a week ago Charlie would be progressing so quickly. I was ready for weeks in the NICU. Thanks for the scripture Mama Sue!!! Love you.
How was your Wednesday? Ours was great!
Today we had another major milestone as he got to nurse and take a bottle for the first time. He did a great job nursing the first time, but the other three times we tried, he was just too tired, so we gave him a bottle to supplement. His feeding tube and IV were pulled this afternoon, so now all he has is a small nasal cannula delivering some oxygen. That's it other then the basic monitors.
We held Charlie almost all afternoon and evening, and I even got to bathe him tonight. Boy did he need it...he was stinky after seven days without a bath. He did not enjoy it one bit, but he sure smells and looks better. And he gets to wear real clothes. Jason had fun shopping for him at Babies R Us tonight while I stayed at the hospital.
Here are a few photos of sweet Charlie from today.
Here's how I left him at 10 p.m. all snug and tucked safely in his bed.
Tuesday, July 21, 2009
Tuesday was a special day
Are you ready? Are you sure?? I had tears again....
We got to hold Charlie today!!!!!!!
God is obviously hearing all our prayers for this little angel. What a day he had on Tuesday. He started the day inubated on the jet ventilator and with lines still in his belly button, and he ended the day with just a nose cannula delivering oxygen, his feeding tube and the IV in his arm. It was a remarkable day for our little man.
Jason and I actually missed the first half of the day due to work for Jason and an appointment I had for Carter. Papa had to work today too, and Coco and I had decided she would come up when I got there at lunch, so Aunt Becky was our surrogate for the morning. For those of you who don't know Becky, she is married to my cousin Greg, she and Greg are responsible for getting Jason and I together 14 years ago, she was my "best chick" at our wedding, she cleaned up our house on Sunday and finished the laundry...you get the drift on why she was there all morning.
I asked Becky for her account of the day, and here's what she said:
"When I started my morning shift with Charlie, I was so pleased to report to his mom that everything was status quo through the night, and he was doing great. When I say he was doing great I mean he was sleeping peacefully as any newborn only stirring long enough to stretch, squirm and yawn even with the tubes going into his mouth. His color looked so good and his swelling was gone. (Note from Jill -- he now weighs ONLY 8.10 pounds, so he's shed all the fluid weight he gained...if only weight loss was this easy for us mommies!!)
His feet were no longer these balloons about to pop but I could identify them as not only feet but as feet that look like all the Lain boys’ feet and toes. You give my any baby and I could find a Lain boy by his feet and toes (Note from Jill -- they are Jason's feet and toes, not mine, and yes, I'm DYING to get some lotion on them:-). It was good to see them so clearly now. Little did I know that this day was about to get exciting.
The doctor requested a blood oxygen level at 10 a.m., and the results were excellent . So with a push of a button and a move of some knobs, Charlie was off the jet vent and on the “regular vent”. I was so pleased to text Jill of the progress and couldn’t wait to see her face when she saw how good he was doing. He continued to lay peacefully unaffected by any changes being made. Did I mention he had not had any pain medicine since midnight and it was 10 a.m. What a trooper! I watched with anticipation because I knew that in one hour if the blood gases were still good then they were going to move forward some more.
One hour later they checked his gases again and again they came back good so next thing I know is knobs are being moved again to change the pressure of the vent. Not only did they change the pressure, but the two tubes in his belly button were taken out. He was progressing right before my eyes and didn’t seem to mind it but welcome it as if saying "I’m ready…let’s do this".
Okay, back to my account of the day now as Becky had to leave since he can only have two visitors at once, and Coco had joined Becky around 11 a.m. At 2 p.m., his nurse pulled another blood gas, and it was fantastic again. His doc was at lunch, so we decided to grab lunch too just in case she did want to extubate him. As we were finishing up, his nurse called me and said we could return in 30 minutes to a baby with no breathing tube!! I think the following photos will tell the story.
What a time we had just looking at Charlie. (Papa was able to cut work short to join us for the party.) I can't even describe how beautiful our Charlie is without the tube and all the tape. He is truly a precious gift from God, and Jason and I are honored to be his parents.
This photo shows how we left him at 9:30 p.m. -- sleeping peacefully in his bed. Good night angel and sweet dreams. I can't wait to see you again in the morning.
Monday, July 20, 2009
Monday was a good day!!
His oxygen level stayed pretty steady today at 26%, and his blood oxygen levels were acceptable all day. He continues to be totally off the pain med drip and is only getting it when needed. His sweet nurse fashioned a pacifier that fits between the prongs of his ventilator, and it helped calm him down when he got agitated a couple of times.
One God-thing that happened today is that I discovered that the mom of one of Griffin's good friends from his 1st grade class is a pediatric pulmonologist at Cook Children's!!! I emailed Karen today about Charlie, and she said she would be glad to be his doc. It will be nice to know one of his docs on a personal level.
I got to help his night nurse change his diaper and start his 8 p.m. feed. It was nice to be included in his care. Of course, it didn't hurt that I realized I knew his nurse's uncle from my RadioShack days (I recognized the last name from her name tag).
Charlie had visitors today from 8 a.m.-9 p.m. His nurses say he is one of the few babies that has someone at his bedside most of the day. He was weighed last night, and he tipped the scale at 10.4 pounds -- remember he weighed 8.9 pounds at birth. The good news is he has lost several ounces of fluid, and we're hoping tonight's weight shows additional loss. I have a new lens coming for my camera on Wednesday, so I'll be posting more photos of Charlie soon.
I found out tonight from one of the other moms that even the other NICU parents are talking about Charlie and how big he is. This mom's baby is just 2.5 pounds (born at 28 weeks -- she's doing well and gaining weight) so Charlie makes four of her!!
The Cook Children's volunteers really know how to take care of NICU parents. Here is a beautiful handmade quilted bag the lacation nurse gave me to carry all my pumping supplies in.
And tonight was a "birthday party" for all the new babies in the NICU. Each family got to choose a quilt for their baby that volunteers from all over Texas make. I selected one made by two ladies who live in Ranger (which is outside Abilene). Isn't it cute!!
This just in from Carter
Carter and I were just making lunch together. He looks into my big glass of tea and says, "Holy crap Mommy, that's a big hunk of ice!" Griffin and I nearly lost it laughing so hard. I think I know where he heard that lovely phrase, but I'm not naming names...I needed that laugh. And who can resist this face. I love my boys!!!
Sunday, July 19, 2009
Sunday's progress
The big development from today was the pneumothorax seems to have resolved on its own. His doc tried a new therapy on him for six hours today (straight oxygen, which he hasn't been on in a couple of days), and by George, we think it worked. The pneumo was very obvious on the 5:30 a.m. X-ray, but by the 3 p.m. X-ray, it didn't seem to be there anymore. It's so cool his nurse can pull up his X-rays side by side on her computer at his bedside. The downside to his X-rays is that his right lung looked cloudier this afternoon then it has in the last day. But the docs aren't overly concerned about that change since the pneumo is gone.
His blood oxygen levels, blood pressure and heart rate continue to be in acceptable ranges with no meds. He is off his pain medication drip and is getting morphine (scary, isn't) and Versed on an as needed basis. I think he got three morphine doses total today, so that's not too bad. He wasn't as alert when we were there because of a recent morphine hit, so it didn't seem like he really knew we were there most of the time.
Charlie continues to do well with his feedings. He is taking almost an ounce of breast milk every three hours. He continues to make lots of urine and stool, so the "plumbing systems" seem to be in working order. The only big change that may be made overnight tonight is to take him off the jet ventilator and put him on a regular ventilator. That would be a huge stride as he has be on the regular vent for 5-7 days to really help his lungs heal. Other then that, he should be status quo overnight with the big events being an X-ray and another weight check. Hopefully, our weight loss plan will be successful and he will be closer to his birth weight of 8.9 pounds.
I'm getting lots of good comments about the blog, and I'm so glad you find it informative. I love giving you updates on our angel. Thank you for all your prayers and thoughts. We feel your love and concern for our family!!
Sunday morning update
Speaking of Bessy, I make everyone laugh when I have to pump at the hospital. They have a special lactation room in the progressive ICU (where the feed and grow babies are). In this room, there are four "stalls" as I like to call them with comfy chairs and pumps for moms with babies in the hospital. I call the room the milking shed because we're in there like cows lined up in a milking barn on a dairy farm. So far, Bessy is doing her job well. I'm about 18 hours ahead of Charlie right now. I pump every three hours, so I take lots of milk up to the hospital when I go. It's small price to pay to make sure Charlie is getting the best nutrition possible.
This morning is back to the real world as we need some clean laundry, and the house looks like a bomb hit it. Then, we'll be off to spend the afternoon with our angel.
Saturday, July 18, 2009
Saturday was a good day
It touched my heart so to see him semi-awake. Jason and I will always remember how that moment felt when we gazed into those eyes for the first time. We were also allowed to touch him tonight, which we haven't been able to do since Wednesday. Charlie seemed to know it was us there with him.
Charlie continued to make progress today. He was able to stay totally off the nitric oxide, and his oxygen levels were between 40-50% all day. He continues to be off all blood pressure meds, and his pain med drip was cut in half. That's why he was more alert today and was able to open his eyes finally.
He started taking more milk in each feeding...10ccs every three hours. He is starting to stool, which shows his digestive system is waking up, and his urine output was crazy good. His nurse weighed him early this morning, and he has gained almost 2 pounds of fluid weight in five days!! Thanks to a couple of doses of Lasix, he is starting to shed the extra fluid. His doc calls it his weight loss plan. He is the biggest baby in the entire NICU right now.
He does have one area of concern in the form of his partially collapsed lung, or pneumothorax, I mentioned yesterday. It means air is entering the space between his lungs and chest wall. His X-rays from today didn't show any improvement in the pneumothorax, but his vital signs are not signaling that he is in distress from it. Pneumothoraxs usually heal on their own, so since Charlie is not showing signs of problems as of tonight, his doc is sitting tight and waiting. She will do another X-ray in the morning and see if any improvement was made overnight. If he does start to show signs of distress, she will have to insert a chest tube, but she's hopeful that will not have to be done. We pray it's one procedure Charlie will get to skip!!
This a lovey that the Teddy Bear Transport ambulance nurse gave us on Wednesday when they were getting him ready to move from Harris SW to Cook Children's. Jason and I both slept with it to get our smell on it, and Griffin wore it inside his shirt for a while. We put it in his bed so he has something from us with him all the time. Since he was moving more tonight, Jason put the lovey in his sweet little hand.
He has a name at last!!
He is named after my grandfather (my mom's dad) who thought I was the best thing ever. He always called me "Doll" growing up. He passed away right after Carter was born, and we buried him on my 36th birthday. Even though he was a man of few words, I always knew I was loved and cherished by my Bebo. I think he would be proud to know his great grandson is carrying on his name.
This is Bebo and Carter (2 months old) just a few weeks before he passed away.
And this is one of my all-time favorite photos of Griffin and Bebo when Grif was 4 years old.
Friday's update
Note -- Kleenex alert!!! Griffin told my parents that he "took a picture of the baby in his head and Photoshopped out all the tubes and equipment". He told them all he can see now in his head is the picture of a really cute baby.
Okay, if your tears are dry, onto the day's progress. Overall, it was a good day. He did have a few setbacks early as he had to have a blood transfusion around 5 a.m. due to all the blood they draw for his endless labs. And because he had been lying flat on his back so long, the top part of his right lung partially collapsed. His doc wasn't too worried about the lung as it's a fairly common problem for these babies.
In the afternoon, he was able to start taking some breast milk in his feeding tube. He got a whopping one teaspoon at 2 p.m. and another teaspoon in the evening. And they weaned him off of the nitric oxide, which was helping to keep the blood vessels in his lungs dilated. So the good news on that is he is able to keep the vessels open now on his own!! He was on 60% oxygen, which is a great number given he is off the nitric oxide now.
I'm headed up there shortly for the day. Jason is going to play with Griffin and give him some special time. He really needs time with his daddy today, so they are going to ride four-wheelers for a while. Carter is in hog heaven at Granny's, so we might not see him for about three days!!
Friday, July 17, 2009
His first photos!!!
Thursday, July 16, 2009
Update from Thursday
Now, today's update on him. His overnight doc called us twice with updates, and I called both times I got up to pump for him. He had a rough night (Wednesday into Thursday morning) as he was trying to breathe on his own as well as with the oscillating ventilator they have him on. At one point, he was taking close to 90 breaths per minute between the two, which is WAY too many. Once his doctor and nurses got the right cocktail of drugs to totally sedate him, he settled down close to sunrise and started letting the ventilator do the work by itself.
Overnight, they gave him a dose of pulmonary surfactant to help reduce the pressure in his lungs, which allows the lungs to inflate much more easily. He also stayed on the nitric oxide, which relaxes contracted lung blood vessels and improves blood flow to the lungs. In addition, he's on a blood pressure medication to keep his pressure up, which in turn, helps the blood flow more freely in his little lungs.
During the course of the day, they were able to wean him down from 100% oxygen to 50% oxygen in his ventilator. They tried to wean him off the nitric oxide, but he wasn't ready for it, so they put him back on it this afternoon. When I talked with his doc this evening before we left, she said they would be making no major adjustments overnight. She wants to keep him steady and stable for 12 hours before making any adjustments.
So her overall comment was that he is still in critical condition, but she was pleased with the progress he made during the day. They are giving us no time frame of how long he will be in NICU...we're taking it day by day right now. Best case, I think he could be out late next week as he's on a course of antibiotics to rule out any infections or pneumonia. Or it could be a couple of weeks. It all depends on how his body progresses.
We are very pleased with how his day ended up. He looks so peaceful and perfect in his little bed. And he is already quite the NICU star. All the nurses that come on each shift stop by to see the "fat baby" and admire him. Our nurse told us they don't get many full-term babies in the NICU, so everyone loves to look at him. He is pretty fabulous if I do say so myself:-)
I know he is already on many prayer lists both in Texas and around the country. I even have a dear friend in France, Irene, who is lifting him up in prayer. Thank you to Kristen and Dawn who prayed with Jason and me over the baby's bed this afternoon. I know he felt your presence. And for our friends and family, thank you lifting for him up to the Lord in your prayers. We feel your love and encouragement!!!
Charlie's story begins here
Our precious boy is here, but he desperately needs your prayers. He was born on Tuesday, July 14, at 1:30 a.m. as a seemingly healthy and VERY big boy (8.9 pounds and 22.5 inches) via a very uneventful and quite easy delivery. We got to hold and love on him for about 30 minutes. He went to the nursery for his bath and routine care while I was moved to a regular room. Around 8 a.m., we were told he had been moved to the NICU because he had turned blue in the nursery and was having a lot of trouble breathing.
The Harris Southwest NICU team did everything they could for him (including intubating him Wednesday morning), but his breathing and blood oxygen levels never improved. Because he was classified as a critical newborn, he was transferred via ambulance to Cook Children's yesterday (Wednesday) afternoon to their newborn NICU. He has a condition called persistent pulmonary hypertension, which means the arteries in his lungs aren't dilating enough to allow his blood to get the oxygen it needs. This is a good website about PPHN: http://www.persistent-pulmonary-hypertension-newborn.com/
He continues to be on a ventilator, and his docs have put him on nitric oxide to help relax the blood vessels in his lungs so they can better deliver oxygen to his body. Our family spent lots of time with him in the NICU yesterday. We can't touch him, and he's heavily sedated, so he can't hear us either, but I believe he knows we are there. And I know God is with him even when we can't be.
Please put our baby and his medical care team on your prayer list. We need as many people as possible lifting our baby up to the Lord at this time. I know God has a special plan for this baby, or he would not have blessed our family with him. I'd also ask that you pray for Griffin and Carter. Griffin got to see the baby in the NICU at Harris SW, and he understands that baby brother is having trouble breathing. Carter just knows that baby is not in Mommy's tummy anymore, but that he's not ready to come home from the hospital. Grif is a very sensitive boy, and he's having a hard time with all this. Carter is struggling with being separated from me. All four of us are at home (Thursday morning), so hopefully we can give the boys some peace.
On a lighter note, no, we have not named him yet. As most of you know, we like to get to know our babies before we name them, and we haven't had that opportunity yet. Jason and I have had no time together alone to discuss our angel's name, but we will soon.
I will do my best to keep you updated, but please be patient with me. Things change with him on a seemingly hourly basis right now, so it’s hard to stay up to speed myself. The last 48 hours are a blur for me.
Monday, July 13, 2009
Soon we'll be a family of 5
I have to say bittersweet with this pregnancy since I know this is our last baby. Even though it's been a challenging pregnancy, it makes me sad I won't have this little person with me all the time. I really love feeling him move around, especially when he gets the hiccups. And the kids/cousins love to feel him moving. It puts such joyous smiles on their faces.
Griffin and Carter cannot wait to meet him. It's all they've talked about this weekend. Griffin wants to be able to introduce the baby to his cousins. We even let them have a say in the name game at dinner Sunday night. Of course, we still don't know what his name will be, but both boys had very specific opinions on the name.
God has blessed us with these incredible boys, and I'm honored to be their mother. I can't wait to see what it's like to be a family of five. One thing I know for sure is that my home won't be clean or quiet for about 18 more years, but it's a small price to pay for the joy my boys bring me every day.
Sunday, July 12, 2009
Kitchen chair makeover!!
Here are some before and after photos of the project featuring Carter's personal chair. Don't you agree we needed them recovered!!!
Sunday, July 05, 2009
Go outside boys
Griffin made a "bobsled" out of his booster seat and our garden cart. Carter gave him a big push and off Grif would sail down the driveway to a ramp/jump they rigged up. I promise it's not too dangerous!!
To cool off, I turned on the sprinker for them to play in. I think they thought it was a bidet:-)
Then they took turns standing on it and jumping over it.
Happy brothers (it didn't last long unfortunately)!!
Thursday, July 02, 2009
My sweet 3-year-old
When we got home, I went to unbuckle him from his carseat. I told him I had missed him today, and he said the most magical words a mother could ever ask to hear, "Mommy, that makes my heart happy. I missed you bunches too." Of course, then I had to explain why I was crying to him. How does a 3-year-old know how to melt my heart already?