The Hands

The Hands
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Friday, April 30, 2010

Today was a good day. Gavin and I went to the pulmonologist and he weighed 10 lb 9 oz.... and they told us we will no longer need oxygen! We have to take it off in stages. fist he will stop wearing the oxygen during the day and then in 1 week we will take it off at night as well. It will be so nice to not have the oxygen tank with us all the time. I am so excited that we are taking the next step forward.

Gavin will be 6 months old tomorrow. Wow, that is hard to believe! It seems like all of this just happened, I cannot believe that this has been 6 months.

Tomorrow we are getting sheet rock in the basement ! Woohoo! This is a great next step to getting the basement finished where the kids will have a place to play. We are very quickly outgrowing our house and these wild boys need some space! I cannot wait til its done!

Soccer game tomorrow and lunch with Laura and I get to meet baby Joseph. I am SO excited! I have been praying so hard for him and cannot wait to meet him!

Tuesday, April 27, 2010

9 lb 10 oz today at the GI doctor! Woohoo!

This morning my mom picked Ethan up from preschool, then I was grooming the dogs when Ben called to remind me that Gavin had an 11:45 GI appointment in ATL. I was like, Oh crap! I had totally forgotten. Which is easy to do since we had 4 appointments just this week! So I took a quick shower and hustled Aiden and Gavin into the car, down to Atl, into the double stroller, ran across the parking late finally found the stupid place right on time....just to wait 45 mins for the doc. UGH! All in all, one appt took 2 1/2 hrs if you include driving. And the doc was in the room 7 mins. Sometimes I think it it pointless, but hey, I am just a mom. He said everything looked good and didn't change anything. no surprise, he is not letting us get rid of the G tube. I knew once they put it in I would have to fight to get rid of it. Oh, well. I was tired, so I will fight next month when we see him. Friday is pulmonary, I plan to fight to get rid of the oxygen. When he is well, he doesn't need it.

Saturday's walk was awesome. I have been in a totally passionate mood about preemies ever since. I have been touched so much this year by it. gavin of course, but our friends Cross and Christian, who were born at a later gestation but went through a lot in their NICU stay. And our dear friends Campbell and Joseph. Campbell fought hard for 23 days and changed the world with his beautiful spirit and courageous fight and Joseph, who continues to defy all odds to show us all to never stop believing in miracles. That is what preemies teach you. That miracles happen, that one life changes the world, to cherish every moment with those we love, and that there is no choice in either change the world with a life or take away all the bleesings that child had to bring.

On a lighter note, Gavin seems to be doing well. Eating well, Gaining weight and really starting to smile and coo. It is so sweet! I love seeing him make the emotional connection of smiling and cooing, one we have sat back and wondered if it would ever happen....and it did. A ray of sunshine that continues to reveal our miracle. I will keep you posted on the pulmonary appointment ...pray for no 02!

Saturday, April 24, 2010

After another 2 day stay in the hospital for aspiration pnumonia Gavin came back home yesterday. Man, this going back and forth is SO tiring! He is doing ok. Last night in the middle of the night we noticed he had a stuffy nose and now he has a stuffy nose, cough and trouble eating. I guess that G tube does come in handy sometimes, we have had to use it some today to keep him hydrated.

Today was the march of dimes walk. It poured rain! i walked with the two older boys in the double stroller with Aunt Kat, and my mom and Grana watched Gavin. It was just too yucky for him to go. We had fun though. Then everyone met for lunch for Pizza. We all wore our matching shirts with Aiden and gavin's pics on them. Too cute! It was a fun day. Now I am dealing with 2 cranky boys who didn't nap and a cranky baby who cannot breathe out of his nose. And, of course, Ben is at the firestation. It should be a long night! I am thankful though to have them all home!

Thanks to all the people who donated on March of Dimes. It is such an amazing organization!

My silly boys! hard to believe they are about to be 4, 2 1/2 and 6 mo. Time is going by so fast!

Thursday, April 15, 2010

growing and growing

Pictures at 1 week and 4 1/2 months~ God is good!

Gavin is now 8 lb 110z! He is growing and getting strong. Since we came home he is eating like a champ. He is nursing better than ever and taking 3 oz in a bottle at a time. We are continuing to use the G tube at night for supplemental feeds for now. Tomorrow we go to PT for the first time at the CHOA rehab center next to kennestone. I am very interested to see what they will do with him. I hope I learn some things that I can do with him at home. I am excited to start the journey of catching up, no more set backs! Thank you all for all your prayers, I know we are only where we are by the grace of God. I am so thankful for all that we have come through. Some days I still fear that yet another thing come up. I think after everything we have been through and everything the doctors tell us we cannot help but believe we might have another scare. Either way, I know God has special plans for him and loves him even more than I do.

We have a pulmonary, cardiology, GI, PT and growth checks all coming up so I hope we make progress in each area and look at getting rid of the G tube soon. The other night I gave him his meds and then fed him. I guess I forgot to close the port on his tube because everything he ate ran out all over the bed. Poor little guy he was still starving. I cried, it was just the realization that my kid has a hole in his perfect little body and just isn't like everyone elses baby. This too shall pass.

Friday, April 9, 2010

Knowing you made the right decision...

So after Gavin's surgery i remember staring at him, intubated, swollen and sedated thinking "did I make the right decision to let them do the surgery?". Then the days that followed were so rough. He struggled so hard to breathe. Required pain meds around the clock and looked miserable. I cried thinking that I should have never let them talk me into it. Now, weeks later, Gavin is such a different baby. He used to cry and arch his back from reflux, he had a hard time finishing his bottles because of the pain and never slept longer than 30-40 mins because the reflux always bothered him. He used to loose weight regularly and never seemed quite himself. Today, I realized all that is gone! He takes his bottle with no problem then falls asleep and sleeps for hours. He plays happily and seems so content. He is healthier than I have ever seen him and his monitor has not gone off once since we came home!!! No bradys, no apneas, no blue spells! Thank God for his guidance that this was the right decision and that though this surgery was tough it changed things for the better and may save his life. 

Today was my first day in sometime all alone with all 3 boys. Also, our A/C was broken...ugh..but thankfully a friend fixed it (and for cheap !). Gavin's nurse also had to come give him his RSV vaccine...ouch ... poor baby. But thankfully we had lots of visitors so I had helpful hands and Gavin got extra snuggles. I managed to do the 8 loads of laundry that REALLY needed to be done and clean the house a little. Back to work tomorrow and sunday...I hat working weekends but it pays the bills and I love my work family!

Ethan and Aiden spent the whole day outside and the weather has been awesome. Yesterday we opened all the windows (no A/C) and the boys played drive thru with my window and the sandbox...very messy for my house. Lots of "donalds" in my was so cute it was hard to be mad. Now that baths are done, we are off to read books and go to bed....


Thursday, April 8, 2010

Home sweet home!

We are all finally home! Gavin is doing well. We are adjusting to the additional medications and using the G tube. All in all its not too hard, just add in two other kids and it can seem overwhelming. He has had no episodes (bradys or apneas since we brought hime home . . . wohoo!). This makes me have hope that all this was worth it if it fixed those scary episodes. The boys are more than happy to have us home. Aunt Katie and I took the boys to the zoo yesterday, it was fun but packed! Note to self: do not go to the zoo on spring break! Today we spent time all together before we go back to work schedules. I also had to teach Ben how to use all the new supplies.

Our friends the Martins (baby Joseph) are also completing their hospital journey! On Monday Joseph will come home from his 5 month NICU stay. He was born the day before Gavin and we have become great friends.

We will keep you posted as much as possible with everything going on with the boys. Ethan has been out of soccer and school this week and is bummed about missing both . . . silly boy loves school! Aiden is loving having his brother home with him. Aiden starts school in Sep and I know he will love when he gets to go too. Thanks for all your thoughts and prayers.


For everyone who has missed out on the past few weeks heres the quick version: gavin went into the hospital for respiratory ditress that we believed was RSV. Then when it continues without any help from breathing treatments the Drs investigated further and found that it was severe reflux. It was causing acid to build in his esophagus and also causing aspiration into his lungs. therefor, they did a fundoplication (google it) and placed a G tube. He also had a hernia repair, circumcision and central line placement. All in all he has 5 incisions. He did not tolerate the anesthesia well and ended up having a very hard time post op with breathing. He spen time on the vent, CPAP, high flow and nitric oxide. 2 weeks in the ICU and now he is finally feeling better. We are using the G tube to supplement his feeds at night to help him gain weight and during the day he takes thickened bottle feeds (we mix the breastmilk with a thickener to help him from aspirating). This has been just one more step in a walk of faith with this little guy!