Mother's Day - First Trip to the Zoo

This post is a little late, but I want to throw it in there.

I celebrated my first Mother's Day with my mom and Lincoln by taking a trip to the St. Louis Zoo on Mother's Day in the morning. This was Linc's first time going to the zoo, and it had been a long time for me and my mom, so it was really special. I also don't get to see my mom all that often, so it was nice to have time together.

We kept the visit short and only stayed about one hour, and that was plenty of time for Linc. Obviously, we were not able to see every thing in just an hour, but Lincoln was able to enjoy the flamingos and penguins. He really likes birds in general. We also made a stop in the children's petting zoo to see the goats, but Linc was overwhelmed with the crowd of people that is always in the goat pen so we didn't stay there long. Just long enough for a goat to eat my mom's map! (I told you it has been a while for us!) Lincoln was not very impressed with the other animals we were able to see, but he did enjoy a lot of people watching. Especially all the kids running around

Linc and I have made one other trip to the zoo since Mother's Day, during which Lincoln enjoyed the big fish in the hippo tank. So now we have seen about 2/3rds of the animals at the zoo with Linc being interested in about 3. Lincoln is a little young still I think to really understand what is going on and what I'm pointing at, but I still enjoy taking him. I am planning our next trip this week to hopefully see the big cats which I anticipate he will love since he loves his little kitty at home!

My first Mother's Day was wonderful. 

watching the flamingos

Mom, Linc and Me

Post-Op Appt Urology

This past Tuesday Lincoln had a follow up appointment with his urologist. The appointment was quick and easy. Just a quick look downstairs and catheter removal. The urologist said that every thing looks as it should 6 days post-op. She said Lincoln could still be tender for up to a month and I should call if he develops a fever or decreased urine output. Otherwise, she would like to see how Linc is healing up in about a month. Linc is still restricted on straddle toys and hip holding, but is now able to take quick baths, which he is happy about. He did not enjoy his showers and sponge bath. Lincoln has been improving over the last few days. He especially seems happier without a catheter! He has only been needing a dose of pain meds (tylenol) at night to help him sleep and his other two prescriptions are now stopped since they were only given with a catheter. Overall, Lincoln is doing great after this first stage surgery. We will have a better idea of what future surgeries will be needed as Lincoln heals up. Off topic -- Lincoln's birthday party this past Sunday was wonderful. Lincoln enjoyed himself and was in a good mood despite the heat. We did get a few drops of rain, but we were covered and it helped cool off the 90 degree weather! I will post all the details soon!

Surgery - Stage One Went Well

Lincoln's first stage hypospadias repair surgery went as planned this past Wednesday. Even though no one in our house got a good nights sleep Tuesday night (maybe Lincoln knew what was to come), Wednesday morning started out great at St. Louis Children's Hospital with Lincoln weighing in at 16 lbs 12 oz! That's a gain of almost a pound in three weeks! I would say that his new supplements are working! We had some time while we waited for his docs to stop in before his 8:15 start time, so we snapped a few shots of Linc in his tiny little gown and slipper socks. He was in a good mood and just too cute to miss! 

I guess Lincoln didn't expect Daddy to be taking pictures so early!

After the nurse and anesthesiologist fought over who would be able to carry Lincoln, we gave him a kiss and Linc went back to the OR around 8:30. We were told Lincoln went under easily, which was great to hear since he was so "feisty" last time! Dan and I waited in the Same Day Surgery room and received phone call updates every 1.5 hours or so. His surgeons were able to accomplish all that they planned in about 3 hours, with no surprises along the way. Which is always the best thing to hear after a surgery!

Afterwards, Lincoln was brought back to the same room to recover. His immediate recovery was very similar to his last outpatient surgery for inguinal hernias. He was very sleepy for quite a while and having trouble keeping his sats up. He was hanging out in the low 80's on room air. He was on nasal prongs at 3/4 of a liter for a few hours to keep him up in the 90's. As Lincoln woke up more, the nurse was able to turn him down slowly. He was very agitated during his awake times and desatting to the 60's. Again, this was exactly his reaction after his last surgery. Lincoln also desats when he's upset at home, so I was not concerned and kept telling the nurse and doctors this. Lincoln just needed more time. They had gotten an overnight bed ready in the PACU for Lincoln earlier in the day just in case they felt Lincoln needed to stay for observation. But Lincoln pulled through and we were discharged to go home at 5pm. Right about 5 hours post-op!

Recovery at home has been going fine. Lincoln is on OTC pain meds round the clock and has two prescriptions. It's been a while since I had to get up every 3 hours to give meds, but it's nothing new! He also has a catheter placed to keep his diaper area dry. This is new for me, but it's really not been too bad since the catheter just drains into a second diaper Lincoln wears. Lincoln has been eating his usual diet and playing well. Although he does have the off and on upset stomach, vomit, or fussy periods. He's also not sleeping great and prefers to be rocked, but this is not too far off from the normal. He is very bruised and swollen, so it may take up to a month for him to fully recover in that sense, but his is temperament is pretty close to normal already. Lincoln really is doing great considering the extent of his surgery. His only restriction is no straddle toys for one month.

Linc will need at least one more surgery, maybe two, to be fully repaired. He will have plenty of healing time (a few months at least) before his next surgery. He has an appointment next Tuesday, the 22nd, for a follow-up with Urology and to have his catheter removed.

I'm so happy to be getting on with the final chapters of Lincoln's medical issues, and so far things are going just great! Lincoln is as strong as ever. Soon enough, all of these doctors appointments will be a thing of the past. And, the best part is, Lincoln won't remember he had such a rough start.

Surgery Tomorrow

Lincoln's first (of a possible three) hypospadias repair surgery is scheduled for tomorrow am. Our check in time is 6:30am. I don't yet have an estimate for the length of the actual surgery, though. This will be outpatient, with Lincoln coming home in the afternoon or early evening. It just depends on how he is feeling afterwards. As long as he can breathe comfortably, keeping his sats up, and is able to keep some fluids down, he will be able to come home. For Linc's last surgery in December, we had to stay a little longer than the average same day surgery patient (about 1 hour post -op is normal, Lincoln needed about 5 hours), but overall Lincoln did well so we expect the same outcome here. Recovery at home is also expected to be very quick (a few days). So Lincoln should be feeling just fine for his birthday party on Sunday! We are excited to see everyone and to celebrate Lincoln's win against CDH!

One Month Off

Yesterday marked four weeks since Lincoln has been completely off of oxygen! There is still a chance of needing to go back on in the future in the case of a bad respiratory infection. But, as of now, Lincoln is doing extremely well! Linc's neonatologist wanted to give him time to be sure he was going to stay off before we returned his tanks, concentrator and monitor. Well, the medical equipment company came today and picked up all of our equipment and tanks! Now I don't even have a monitor to read Lincoln's saturations! He's doing so well! Yay, Lincoln!

"Smell That Smoke"

Tonight, Dan and I took a risk and decided to take Lincoln for his first dinner out! Lincoln is kind of hit or miss when it comes to mealtimes and being restricted on movement, so it was a bit of a gamble taking him. But he seemed to be in a good mood, was well rested, and had just eaten an hour earlier, so I figured it was optimal conditions. The rest was up to Linc. We decided on Banbana's Bar-B-Q. They have all the food Lincoln likes and they are pretty fast. Also, we had the option of getting our food to go if things headed south.

I have to say how impressed I was! Lincoln could not have been a more well behaved boy! He was entertained by all the new objects and people, and he really enjoyed the food! Of course I had to bring the camera to document this "first" for Lincoln! I must tell you that Dan was mortified at my taking pictures throughout the meal! I just laughed at him! I could care less what people think. I was taking my baby out for the first time!

Lincoln was staring at all the fans and lights hanging from the ceiling. I think his mouth was open in shock for a good 10 minutes as he took it all in.

After we got to our table, Lincoln was fascinated by a row of blue and red bandannas hung on the wall.

He decided to go back to chewing once he had gotten an eye full. He'll be getting a new pair of teeth soon enough!

Hanging out with Daddy, waiting for our yummy BBQ.

Picture with Mommy. Linc just cannot keep focus with all the distractions!

After waiting a while for our food to come out, Lincoln got a little hyper and Dan and I got a little tense, thinking this might be the end. Linc is "bouncing" in the highchair here.

Bandanas is a super exciting place!

When our food came out, Lincoln really enjoyed his first baked beans,

potato salad, and a known favorite- chicken.

Heading home. We couldn't have asked for a better first family dinner out.

The Journey

I haven't written too often about the emotional side of things since Lincoln has been home. I did quite a bit of that while he was still in the NICU, but now just the occasional about something big (Like getting to room air!). Most of the time my posts are filled with medical facts and pictures of adorable Lincoln, but there hasn't been a lot about our family and how this whole CDH thing has changed us. As you can imagine, it has changed us. And the emotional roller coaster did NOT stop when Lincoln came home. While Lincoln was hospitalized, and during his dark ECMO days, people would say how unfazed I seemed by the stressful situation Dan and I were facing. Going through something that is life or death kind of leaves you stunned, and you start to express emotions and grief AFTER it is over. I cried, a lot, and had many crazy moments after Lincoln was home, to let it all out and really accept what had happened to our family, and what Lincoln had been through.

As you can see by the long list of blogs in the sidebar, I follow many other CDH families as they experience their own journey. I have done this from the beginning, ever since we were diagnosed, to help me find some direction. Now that we were well into our journey, I still find joy in following other families at various points in their own journey. It is really amazing to see there is such a variety of outcomes with CDH.

Some CDH moms are very expressive about the feelings they have. One of those moms is Corinne, mom to survivor Samuel. She is so articulate and great at sharing her thoughts. Her blog, Samuel's Light is a joy to read. Sometimes I can connect with the feelings she expresses about her son, and other times I just like to catch up on what Samuel is up to. Her latest post on Samuel's Light sums up a lot of emotions I have that I have neglected to blog about, due to my inability to organize my thoughts, put myself out there, bring other families into my blog...you name it. I wanted to share with you her words to help explain a little of what I have left out from my blog. I encourage you to read the other blogs as well, especially those still fighting as mentioned in Corinne's post, and keep them in your thoughts.

First Time for Everything

Sleeping in the Highchair

Kiddie Pool

It seems we are getting a glimpse of summer this week. Who knew it would be 90 degrees at the beginning of May?  Well, it is, so I took the opportunity to break out the kiddie pool and let Lincoln have his first pool experience.  I got Lincoln into his tiny trunks and rash guard, lathered him up with 50 spf and put his hat on and out we went. Oh yea, I put my suit on, too, of course. Lincoln wasn't too keen on sitting in the cold water at first, but he got used to it after I helped him ease into the water.  Then he realized it's just like the bath tub and started to enjoy himself! I cannot wait for more summer days of fun with Linky!

How cute is this little swimmer?

Decided to go for a crawl to check things out.

Checking out the sea horse on the bottom of the pool.

Super sweet. Super cute.

Lincoln Has Puppies!

As I have mentioned in another post about our cat Neela, Lincoln has two puppy dogs, Peanut and Bailey.  They have been enjoying a "vacation" at G-G's house (Grandma Thompson) while Lincoln was on oxygen at home.  Well, as you know, Lincoln is doing well now off of oxygen so it was time for him to finally meet his puppies!  He had never seem them in person, but I would show him pictures often and say their names, hoping he would be familiar with them. I'm not sure if it worked, and it doesn't matter, because Lincoln (and the dogs) did great when they met this past Saturday.

Meet Bailey

And Peanut

Lincoln's first reaction to the dogs as I let them inside from the backyard.

I think Lincoln likes them!

HAPPY to see his puppies

Very curious

Going to "get" Bailey

Both of our dogs are very good in general. Peanut is not too fond of kids, but he has learned to behave around them and pretty much kept to himself (thanks to lots of practice being around cousins Layla and Aubrey at G-G's! Thanks, Jen!). Bailey also kept his distance and didn't come up to Lincoln. Rather, he let Lincoln come to him...and climb...and pull...and bite...all the while being calm and relaxed. He's such a good dog.

It's been a few days now since the dogs have been back. Neela has spent most of her time in the basement, away from them. Her time upstairs now that Linc is off of oxygen was short lived! The atmosphere in the house is really about the same, except for the increase of pet hair and lovely dog smell. I was expecting this big transition, but the dogs and Lincoln have really been comfortable with each other. I'm the only one making adjustments, as I just purchased a new hand-held vacuum to help me manage the hair. Poor Lincoln is like a big swiffer crawling all over collecting the pet hair! It has also a bit more challenging to take all three on daily walks, but I have managed, and it's getting easier. Yesterday I had several people in the park comment on my ability to have all three out. One lady simply said, "Good for you!" And it is good for us. We are all together. One big happy family!