Matthew Connor on Scrumpy Daddy

Tiddle. Toodle. TODDLE!

Fri, 04 Oct 2013 22:52:22 -0400

I know it has been ages since we've posted anything here, so there is plenty to talk about, but tonight, I just want to share a video. If you are reading this in an e-mail, please click on the title of the post (above) to get to the web page for this post to view the video.

Check out what this little guy can do!

Download video

Go, Matt, go!

Images of Summer 2012

Sun, 23 Sep 2012 15:24:24 -0400

We had a wonderful and busy summer. It started off with a sad note as our neighbors and good friends left and moved to TN. Caleb started his surgical residency in June and we wish him all the best. Their moving away though, did inspire us to revamp the backyard. We acquired from Craig's list and awesome wooden swing set with 2 slides and a tree house type area. Abby had really wanted a tree house, but we don't have great trees for putting one in. Also, Dave built an awesome sandbox big enough for both kids to play in. Zach has spent most of his summer in it. It is wonderful to see all the creative play with the tree house and the sand box.

Matt is almost 1

Sat, 22 Sep 2012 14:15:10 -0400

Wow, looking back at the blog I see just how long it has been since anything was posted here. So much has happened to Matt since the last post in March.

In the last post it stated Matt was going to have spinal surgery to release his tethered cord. He did have the surgery and oh what an ordeal. The initial surgery went well and everything appeared to be healing well when we left the hospital, though we did have some concerns regarding how the surgical site was looking. They had used the surgical glue to close his incision instead of sewing it shut. By the time we were leaving the hospital the glue was already pulling away from the skin. About a week after being sent home he had a very high fever. Since we didn't know what was causing it we called the doctor and they said take him into the hospital. The surgical site was infected. They had to take Matt back into surgery to clean out all of the infection. This time when they closed him they sewed him shut. He was so miserable and in so much pain. They had him on morphine to try and keep him happy, but that caused its own problems. They ended up putting what was called a trumpet in his nose to keep his nasal passages open and clear so he could breath. Apparently since he was being kept fairly sedated with the morphine his soft tissue was kind of collapsing and making it hard to breath. When Dave was with him they had to call a code blue because he just wasn't breathing right and his stats were so low. During this whole ordeal they were working on figuring out what kind of infection it was to decide on what antibiotics to use. The plan was to place a PICC line to administer antibiotics from home. Since this was the plan they were not allowing Matt to eat since they would have to sedate him again to place the PICC line. It ended up that Matt had not eating anything in more than 48 hours. I can't even begin to imagine how uncomfortable Matt was. He was in pain, hungry, and back in the hospital.

Matt update for March 2012

Fri, 30 Mar 2012 13:16:28 -0400

Hello, all! Matt has been doing very well since his last surgery in early February to open up his nasal airway. He went to one followup appointment in the OR two weeks after his surgery, and they said things looked good then and to come back to the regular ENT office (clinic) in another month. He just had that appointment earlier this week, and they said that he still appears to be completely open and clear! Yay! ENT said that as of now, Matt is officially done with their department unless something comes up to require them. Yay! Hopefully, that is the last time we will need to worry about his nasal airway!

Matt is home!!! (Take two or three?)

Mon, 19 Dec 2011 11:47:13 -0500

Matt was in the hospital since the Saturday after Thanksgiving until last Thursday, December 15th. He successfully had the stents removed on Wednesday, the 14th, and was like a completely different kid without the stents than with the stents. He was back to the way we knew him. He was clearly happier, and was eating well right away, which amazed the PICU doctors. (I don't understand why they wouldn't trust us, the parents, after telling them the same thing every day for more than two weeks, but that is a post of it's own.)

It's been a while . . . and Matt's back in the ICU . . .

Fri, 02 Dec 2011 11:59:34 -0500

It's been a while since I posted last. Matt was at home and doing very well for two weeks. (After we got home from the hospital trip referenced in my last post.) He was breathing fine, eating great, and just being a pretty easy-going baby. (Unless he was mad about being hungry; then he was prone to occasionally holding his breath . . . but it wasn't too bad.)

We had a great Thanksgiving and had family over to our house on Friday after Turkey Day, which was awesome, as well. We got to visit with my brother & SIL, and the kids got to play with their cousins all day. We all had a wonderful time! Matt seemed to keep clogging up his nose that day, though; we had to keep working on him to keep him breathing OK. At Matt's midnight feeding, he was having some breathing issues and due to that, wouldn't eat much. It was bad enough that we thought we should take him into the hospital, so I got ready to go, packed him up, and headed to Children's. We checked in at 1:52AM on Saturday, November 26th. :-)

Regressions and progressions

Mon, 14 Nov 2011 09:52:19 -0500

On Thursday, it sounded like Matt was a bit congested. We sucked out his nose a few times, and got out a large volume of very sticky gunk once or twice. After those times, he was breathing easy. But then it would get worse again. By Thursday evening, he was laboring a little bit to breathe freely, and it was affecting his eating - sucking on a bottle, a baby needs to be able to breathe through his nose, but Matt's was a bit closed off, making it very difficult for him to eat. Breathing takes priority over food. :-)

Matt is Home!!!

Thu, 10 Nov 2011 12:46:10 -0500

To those of you who aren't on Facebook, Matt is home. Children's Hospital released Matt on Monday afternoon after having a very good weekend of feeding and weight gain. That was the criteria for Matt coming home. He needed to be taking his thickened feeds via a bottle, gaining weight, and not having any respiratory distress. He had done well all weekend taking between 40 and 60 mL of his thickened formula. Both occupational therapy and speech therapy watched him take a feed on Monday and they both said his suck is getting much better and he is doing so well. He will have to follow up with the eating clinic to have them watch his progress, but otherwise he is good to go. The eating clinic is where they will determine if he can reduce the amount of thickness of his feeds.

Feeling of Futility

Wed, 02 Nov 2011 22:50:57 -0400

Yesterday and today were hard days for me. They felt like days of futility.

They started Matt on his thickened feeds, which was very exciting to hear they were going to start. When I arrived at the hospital yesterday I came in and saw he still had the feeding tube and was receiving his full feed via it for his noon feeding and there were bottles of formula in the room. When we received the news that he would be starting bottle feeding with thickened feeds Monday afternoon it was not well explained that it would not be breast milk and that it would take him a while to get to his full feeds via the bottle. I guess my expectations of him feeding were too high. Since Matt had not been nursing or bottle feeding from the start due to his nasal issues and then when they did begin feeds it was via a feeding tube due to him aspirating he would now have to learn how to feed at 22 days old. For a baby sucking is a natural thing and normally they quickly learn how to make that get them food. Matt has been getting food and not having to work for it since it was through the feeding tube. This means he doesn't quite understand that he actually has to do something to get food.

Update on Matt and Halloween

Tue, 01 Nov 2011 09:37:02 -0400

First the update on Matt. Matt had his cookie swallow test yesterday to see if he is still aspirating his food since getting his stents out. He passed his test with a thickened feed. They are starting to feed by bottle with additional rice cereal in his milk to help him swallow it properly this morning. The feeding tube will no longer be needed if he does well. That is great news! Now we wait to see how he does and then there may be a plan for him coming home.

Matt's stents are gone!

Sat, 29 Oct 2011 13:09:20 -0400

Well, Matt's stent removal procedure was scheduled for Friday, October 28th, then changed to Thursday, then changed back to Friday. :-) It was scheduled for 5:30 PM on Friday, and when I got there Friday morning, they said they had an opening at 2:30PM, but right after I got there, the OR called up and said they had an opening soon (about 10:30AM.) So, Matt was prepped and sent down to the OR to have his stents removed, and got in there about 11:00AM. I got to see him again around 12:20PM.

Matt's stent removal date change

Wed, 26 Oct 2011 09:44:32 -0400

Just a quick update on a date change.

The doctors have now scheduled Matt's stent removal for this Thursday, October 27, 2011. Once that is done, they will perform another swallow test with him on Friday, October 28.

After that, the key things we are all looking for are:

Eating by mouth without trouble
Gaining weight appropriately
No respiratory distress

Once those goals are met several days in a row, he should be cleared to come home. Anything can happen in the coming days, of course, but those are the key goals.

Update on Matt 2011-10-20

Thu, 20 Oct 2011 19:41:29 -0400

Thanks to all who have been praying for Matt. He is doing well, though we still have some obstacles to overcome. The big issue right now is his feedings. He started to try to bottle feed, but he was choking on the milk and it was squirting out of his nose. They had Matt go for what is called a cookie swallow, which is also called a barium swallow. They then watched the barium to see if the milk went to his belly or anywhere else. They found that Matt was aspirating, which means milk was getting into his lungs. This is potentially very dangerous as it can lead to pneumonia. Since this was the result of the cookie swallow, Matt can no longer have milk by mouth via a bottle.

Matt Took a Bottle

Mon, 17 Oct 2011 19:33:22 -0400

Today they started "feeds" with Matt. They started giving Matt the breast milk I have been pumping via a bottle. They are starting with 10mL every 3 hours. His first feeding today went wonderful. He was wide awake this morning at 9 for his feeding, which made it better. Though, the only problem he was having was that milk kept coming out his nose. We think because the stents are there they are holding parts of his nose too open that when he tries to eat sometimes it goes in his nose instead of down his throat. We discussed this with the nurse and doctors as we weren't sure if we should do a feeding tube instead until the stents come out and we are just going to continue to try the bottle and expect this will just be something he will need to learn how to work around. The next feeding he had at noon, which Dave started to try and give to him. They want to start having us do more of his care since we will be the most consistent people giving him care. The noon feeding didn't go as well because he had been sleeping and we had to wake him to feed. He was never fully awake so it took more work to get him to eat. Then I tried to do his 3pm feeding, which again only went ok. He was still a little sleepy for this and just didn't feel like sucking. I can't wait to try again tomorrow.

Photo History of Matt

Mon, 17 Oct 2011 07:25:45 -0400

Here is Matt in the first NICU at the hospital where he was born before he was transported to Children's Hospital.

Transporting Matt to Children's NICU.

Matt at Children's NICU.

Update on Matthew 10/15/11

Sat, 15 Oct 2011 20:58:02 -0400

There has been many things that have happened with Matt in the past couple days since we posted. We have been posting updates on Facebook for those of you who are friends with us, but we wanted to do another blog update for those of you who are not on Facebook.

Surgery:

Matt had his surgery at 3pm on 10/13 to open his blocked nasal passages. The surgery went very well, though it took longer than they anticipated. They took Matt down a little after 3 to the OR and he didn't come back up for several hours. They did keep sending someone up to inform me of where they were in the surgery. I received and update when the surgeon began the 2nd side and then again when the surgeon decided to make the openings bigger than he originally did. The surgeon had to open his nasal passages more than he initially thought in order for the stents to fit properly. Matt will have the stents in for 2 weeks to make sure everything drains properly while the opened passages heal. He has a followup appointment in 2 weeks to have the stents removed.

Update on Matthew - 2011-10-13

Thu, 13 Oct 2011 08:07:02 -0400

This is just a quick update on Matt's status. They completed the CT scan of his nasal passages and the ENT doctors have concluded that he has a condition called "Choanal Atresia" which basically means that there is a blockage in his nasal passages. It is on both sides of his nose. When babies are born, they are wired to breathe through their noses, which is why Matt had problems breathing, and ultimately, stopped breathing.

Welcome Matthew Connor, 10/11/2011

Wed, 12 Oct 2011 14:05:48 -0400

** Edited on 2011-10-12 around 10:30PM to include additional details, fix up a few details, clean up grammar, and correct Oxycontin to be Oxytocin (auto correct had modified it to Oxycontin...)

Matthew Connor entered the world at 7:50pm Oct. 11, 2011. Weight - 5lbs. 10.5oz, length 19 inches.

The last couple weeks have been quite interesting, which led up to a very interesting labor and delivery. In the last couple weeks I experienced false labor a few times before going into actual labor. I had never experienced this with either of my other children. The first time was on a Tuesday morning when I began having contractions every 10 minutes for a good hour, but
then all of a sudden they stopped. I felt bad because I had Dave work from home that day thinking we might be going in later to have a baby. I went to my doctor appointment that Thursday and found out I was only 1.5cm dilated and 50% effaced, which is where I had been the week before. No progress was very disheartening. When you get it in your head that today is the day to have the baby and you don't it really makes you not want to do anything the next day. The next time was a Monday evening where I had contractions every 10 minutes for over 2 hours before they fizzled out. Then again on Sunday after that, again for about two to three hours. Then finally yesterday, Oct. 11th I began having contractions at 6:40am and they continued throughout the day and increased in intensity.