Blogger Slacker .... Picture Updates

Okay, okay, okay... it is official! I am a blogger slacker. I apologize to all the loyal blog readers. I promise to be better. Legare is doing awesome. He weighes 13 pounds 11 ounces and is 24 1/2 inches long. He laughes, plays, rolls over and has quite the personality.

Sweet Potato Baby! 12/3/07

11/26/07

Playing in the party circle!(exersaucer)

A Blessed Day

Legare's Christening

11/4/07

Legare and Papa

I finally found my feet and now they are my favorite toy!
10/30/07

A little surfboarding tummy time

10/10/07

Best Wishes Allison! Thanks for taking such good care of me!!
9/07

Bathtime - my favorite!

9/07

10 pounds here we come!

Okay... I have be somewhat of a slacker on the blog the last week or so.

Our weigh in last Thursday was great! 6 ounces in 7 days - he was 9 pounds 12 ounces. We go back tomorrow morning for another weigh in if we have a three week upward trend we can rule out the g-tube for now. yeah!!!

A baby receives most if not all of their antibodies in the third trimester. Legare's antibodies have always been low and we are continuing to monitor his IGG levels (antibodies) - they have continued to slide downward. To summarize, Legare had numerous infections in the NICU so we started monitoring his IGG levels while he was in the NICU and gave him supplemental IVIG (antibodies) while in the hospital. His last treatment was Memorial Day weekend and we have had his IGG levels checked monthly since then and they have continued to slide downward. The issue is IVIG is a blood product and can only be transfused by IV over a 6 hour period. When we were in the hospital that did not pose as much as a problem plus there is always risk when doing a transfusion. Long story short we are hoping that since his nutritional intake has been improving that he will start making his own antibodies. Also, October through March, Legare will be getting a once a month vaccine called Synagis for RSV (Respiratory syncytial virus). My thought along with my pediatrician is that his biggest threat is RSV, a cold or the flu and since he will be receiving that vaccine we may be able to hold off on the IVIG unless his levels continue to decrease significantly.

Answered Prayers...

A little delayed post...

we had a great week! Two good doctor's appointments in one week! On Monday we went to the High Risk Developmental Clinic at MUSC. First, a premature baby has two birthdays - the "real" birthday and an adjusted/developmental birthday (due date) so his birthdays are February 17th and May 26th. He is respectively 6 1/2 months and 3 months. The doctors were very impressed with Legare, and had nothing negative to say (which is a first!!!) developmentally he is around 4 1/2 months - which is great for a preemie to be so far ahead of their adjusted age. He can roll over, has awesome neck control, sits up in his Bumbo chair....the list goes on and on - I won't keep rambling - I am a proud mommy he is doing so well. We go back in 3 months - yeah one less weekly trip to MUSC.

Next, Thursday we went back to Dr. Traynham (pediatrician). Legare gained 7 ounces in 9 days- really probably 4-5 days since he was sick last week and didn't eat much. We were thrilled! He is 9 lbs 6 oz. We still need to continue with weekly weigh ins to make sure he continues to have steady weight gain, but right now there is not a tube in our future. We all did a little dance in the doctors office :) !

Doctors Updates...

Well, Legare had his 6 month doctor's appointment on Tuesday. He is looking good, still a little peanut.

Weight: 8 pds 15 ounces
Length: 21 inches
Head Circ: 15 3/4 inches

He got his shots as well - poor little guy. We had a great conversation with our pediatrician about his weight/feeding issues. We talked about the pros/cons of the g-tube and what the surgery would consist of. He did defer to the GI specialist about timing and when to do the tube. Legare has continued to eat better, but unfortunately after he got his immunizations he got a fever and did not eat very well at all for our weigh in today with the GI specialist.

The GI said that he is encouraged and that he has improved since our last appointment 3 weeks ago, but Legare needs to have consistent weight gain in the next two weeks; if not his recommendation would be the g-tube. We go back to the pediatrician on Thursday for another weight check and then go from there.

I do not know if I am over tired, but this week has been such an emotional roller coaster - so much pressure on each and every bottle. You can tell he is trying and probably is just as frustrated as I am. It is just so hard to get him to eat and every ounce is so important. I was telling one of my friends that he needs an extra 3 ounces a day - to the average baby they could probably do it in their sleep, but for Legare that is like climbing a mountain. Sometimes I wonder if the tube would be better for him, or is that just the easier way. He is gradually improving - key word gradually.

Well, after this week we are headed for a little piece of heaven or so I think. We are going to Point Farm. (My family's place on Wadmalaw Island) To me, there is nothing better than hanging on the porch or taking the dogs swimming off the dock - no cell phones, no doctors just a little R & R.

Dog Days of Summer...

Our other two kids...Charlie and Riley

Sometimes we feel like swimming in the river;

other times we would rather chill in the pool

Six Months Old!

Legare's Lounge Chair

Guardian Angels

Legare turned 6 months old yesterday. The NICU seems like it was so long ago in some aspect, but then like we were there just yesterday. Legare is so lucky to have had such wonderful nurses - his guardian angels. The NICU is such a cold, sterile, frightening and overwhelming place, yet the nurses are what bring it life. And life is what the NICU is about and for. The professionalism and compassion of the NICU nurses is truly amazing. They were so supportive when times were grim and uncertain, and yet helped celebrate the many milestones from a good blood gas, feed, and weight gain as well as major milestones such as being extabated. I will always be eternally grateful to them. They helped me get through the NICU and became my friends.

Clarification

I feel I need to clarify myself from a previous post. Adam and I both like Legare's doctors and listen to all of their opinions. None of his doctors have stated that he needs a G-tube at this time, but it is on the back burner. Legare has been able to stay one baby step ahead of the tube; we would just prefer him be one leap ahead. His pediatrician, OT, and dietitian have been trying alternative methods such as higher calorie formula and want to exhaust all possibilities before placing a g-tube in his stomach. Obviously, we will do whatever is in his best interest.

Nap buddies

"Riley move over ... you are hogging in pillow"

Legare....the Who

I love this picture...he reminds me of a "who".

Hanging with my cousins

Last night for a little R&R, we went swimming with our nephews, Mason (2 yrs. 4 mos) and Ryan (will be 5 in Sept.), Allison, Tony, Jess and Todd. They were so cute with their baby cousin. I was so impressed and proud of Ryan; he was great with Legare. He better get the practice in since he is going to be a big brother again. Allison is expecting twins in early March.

Weigh In ...

The dietitian came bright and early this morning. I was excited because Legare had been eating so much better so I was sure he had gained adequate weight. Well, I was wrong. He gained 6 1/2 ounces in 2 weeks. The goal was 12-14 ounces. I was shocked, frustrated and disappointed. How do you make an infant eat more? Sometimes I might as well be banging my head against a wall. Liz (dietitian) gave some suggestions and we added more calories to the formula hoping that if we can get him to take 16-18 ounces a day at a higher calorie formula he will gain weight before we go to the GI specialist and pediatrician next week. Liz is going to come back next week for our weigh in so we know what we are up against when we go to the doctors. I know it sounds like we are not for the doctors - after being in the hospital for so long I have learned that there are definitely pros and cons to every scenario. We feel at this current state we are not at the point where he needs a tube. I feel if he has a tube that he will never learn how to eat properly and that it is an immediate fix, but doesn't solve the long term problem. If they tell us that it is imperative that Legare have a G tube of course we will do it.

Next the occupational therapist and early interventionist came at 11:00. I was already fried at this point, but I really like these girls. They were very positive - Legare has become more alert, they were happy he was eating better, and we went through his exercises. I never realized how many things come naturally for a newborn, but for Legare I need to help teach what his natural reflexes would have been. Today we worked on exercises to help him learn how to grab his feet, and pull them in his hands as well as towards his mouth. I always thought babies were so cute rolling around with their feet up to their head (really I was wishing I could be that flexible!) I never realized all of those things are reflexes. That is our task for the week until all of our appointments start again next week.

Just to catch everyone up, Legare has the following:

Dietitian (Liz) - she helps monitor his weight and calorie intake
Occupational Therapist (Brenda) - she helps with eating coordination, and developmental milestones
Early Interventionist (Alicia) - she helps with his milestones as well. She follows him until he is 3, but also coordinates if he needs any specialties such as the dietitian and OT.
GI specialist
Pulmonologist (Lung Doctor)
Pediatrician
High Risk Developmental Clinic (that doesn't start until the end of the month)

We see all of these every week or every other week. Luckily the first three come to my house!!

When I get frustrated and have a bad day, I look at Legare and realize what a true blessing he is and how far he has truly come. For a 25 weeker, he is doing better than we could have ever hoped for. Legare's time frame may not be my time frame - that has been a realization in itself. Before all of this, I was a true type A, control freak with little patience. In this situation, I have no control and I need more patience then ever. While we were in the hospital my friends would say God never gives you more than you can handle. I have learned to put everything in God's hands and let him take over. A new favorite quote of mine - "If he leads you to it, he will lead you through it."

Catching Flies

After all that eating, now it is time to catch some zzzzzzzzzzzzzzzzzzzzzzzzzzzzzz's!

Little Things in Life

It is amazing how we take for granted the simplest things. Eating for one. For a term baby, sucking is a reflex. For a premature baby, it is learned. The coordination of sucking, swallowing and breathing develop around 34 weeks gestation. When we were in the hospital, I thought breathing was going to be our biggest obstacle to overcome - little did I know it would be eating. For the past 7 weeks, it has been a challenge to get Legare to eat 1-2 ounces a feed (an infant should be eating 3-4 ounces a feed). We have tried breast milk, formula after formula - we are on our 4th and of course it is a specialty formula that you have to order. It is extremely frustrating trying to feed an infant who can not suck very well, and has very bad acid reflux. The pediatrician and GI specialist have been suggesting a tube in his stomach for the past couple of weeks since he is not eating or gaining enough weight. I wanted to give him a little more time before we had to go back to the hospital. So I have an occupational therapist and dietitian come to the house to help him learn how to suck and give any pointers or suggestions. After trying to be patient, getting frustrated, praying and praying, did I say praying!!! - Legare ate 3 ounces back to back today!! I was so excited I wanted to do backflips! I hope we are turning the corner. At our last weigh in on July 30th, he weighed 8 pds. 4 ounces, we go back on Monday. They want him to gain 1/2 -1 ounce a day. Hopefully we are somewhere in that ballpark and have skirted the stomach tube issue.

I am going to give blogging a try!

Well with so many friends and family around the country, I decided to give blogging a try. A lot of my friends have blogs so I am jumping on the bandwagon. Hopefully this will be a nice way for our relatives and friends to get updates and see new pictures of Legare. I hope I can stick with it. I am the worst when it comes to scrapbooking and photo albums. I love to take pictures, but they never make it into an organized presentation. I have a couple of friends who are masters at scrapbooking - personally I wish I could just pay them to do all of mine.

So here goes.... I have added a couple of posts, but I was getting a little overwhelmed and decided not to back track through Legare's journey in the hospital. So we will just start fresh and move forward. I hope to update it on a regular basis, please feel free to give me a hard time if it has been awhile since the last post.

Father's Day Tradition

This is a little out of order. Legare came home just in time for our Father's Day tradition... U.S. Open Sunday. It was so great to be able to lounge and watch the U. S. Open with Peanut, and not have to run back and forth to the hospital.

Lazy days at Point Farm

Hanging with aunt Karen - I am so glad you came to visit from California. We can't wait to see you at Christmas!

Rocking on the front porch with 'Sadie' aka grandma.

Generations....

My grandfather, Allen Legare, is such a role model to me. He is a wonderful person, husband, christian, citizen, politician, athlete...the list goes on and on. He and my grandmother are on the highest pedestal. Needless to say, Legare was the perfect name for my little blessing. He had the Legare gene in the NICU and was quite the fighter - just little 'Papa'. Legare and I met his cousins, Anna and James, over at Bishop Gadsden for our afternoon tradition of tea parties.

Bathtime, Yippie!

Even though Legare is a little dazed - bathtime is one of our favorite times of the day!

You've Come A Long Way, Peanut!!!

118 days LATER! Peanut is home and looking oh so cute!

Now weighing 6 pounds and 10 ounces and 17 1/2 inches long.

Legare is such a blessing and has overcome so many obstacles. This picture is taken two days after he was born on February 20, 2007 in the NICU. He weighed 1 pound 11 ounces and was 13 inches long. Little did we know that this would become our home away from home for four months.