1

Four months old

20130825-214426.jpg

Wow! We’ve been home for 3 weeks now and loving it! Max’s discharge weight was 5 lbs 15 oz and last week at the pediatrician he was 7 lbs 8.5 oz already! He’s also added 2 inches in length the last 3 weeks!

We are so pleased that he continues to do so well. He has been turned down to 0.04L/min on his oxygen and is quite happy with each change.

Here are a few snapshots of his time at home.

20130825-214751.jpg

20130825-214813.jpg

20130825-214837.jpg

20130825-214908.jpg

3

Homecoming

What a whirlwind few days! Chris and I are delighted to announce that Max came home yesterday, July 31! Today is exactly 6 months from the day my water broke, and we can’t believe that we are now home and together as a family!

We had quite the time getting Max sprung from the clink (as it were)! For the week and a half leading up to Max’s surgery we kept hearing that he would have his sleep study Sunday night and we’d room in on Monday night to go home Tuesday. Well Sunday rolled around and we were told that there was no research nurse to conduct the study, it could be started the next day. Monday came around and there was still no research nurse, so our bedside nurse and the charge nurse set up the sleep study to let it collect data overnight. (hooray!) unfortunately the next day we found out that the study had been set up incorrectly, and would have to be repeated, boo. The doctor allowed a four hour test instead of overnight, and Max behaved so well, he actually looked “too good” on the study as he didn’t even desat once! He also rocked his car seat test, he actually likes sitting in the seat.

So Tuesday night we stayed in the hospital with Max, and he was a lovely little sleeper until about midnight, and then we had play time from 12-6am! It was difficult to room in at the hospital because there was no fridge or hot water in the room so it felt like we were constantly going back into the NICU for things like milk and cleaning bottles etc., but we loved the privacy to spend the time with our lovely little boy. We checked back in with the doctor in the morning as they asses the baby again before you leave, and the doctor realized that Max had never got a follow up echo to check if his heart murmur had sealed itself (it hadn’t been heard since he was 2 weeks old), so we had to wait while the echo people came up and did a quick check to make sure. His heart is totally fine, and is the one area that we have no follow ups scheduled!

They do such a great job going you set up with appointments and follow ups that we hardly have to do any work, just answer the phone! We’ve already had the home oxygen company, and the home care Respiratory Therapist come by the house to deliver more oxygen and check out Max’s saturation. She will visit each week and wean the oxygen, she says that the amount he’s on is so low, that it will likely not take too long to wean him off the oxygen.

Anyways, that’s a lot of stuff to say to say that we are completely delighted! It feels so normal and lovely to be here together, and though we are a little sleepy (: we are so happy.

20130801-185226.jpg

20130801-185249.jpg

20130801-185307.jpg

20130801-185334.jpg

20130801-185347.jpg

His discharge weight was 2710 grams, just under 6 pounds!

4

And now for something totally random…

Well, it was a fun night at the hospital tonite. Amy and I (Chris) pretty much have to live here for the next few days again. Anyhoo, we have been here most of the evening and had some fun times with Max. He was very alert and playful for a good portion of the evening. We took many pictures and made many memes. Some memes were contributed by our good friend Marcus. In hopes that they will brighten your spirit and without further ado, here are our favourites.

20130728-221520.jpg

20130728-221539.jpg

20130728-221557.jpg

20130728-221611.jpg

20130728-221624.jpg

20130728-221648.jpg

20130728-221707.jpg

20130728-221714.jpg

20130728-221724.jpg

20130728-221741.jpg

20130728-221749.jpg

20130728-221800.jpg

20130728-221835.jpg

20130728-221851.jpg

20130728-221902.jpg

1

Surgery success!

Well it has been a busy week! It has certainly felt like the busiest week since those first few weeks after Max was born where every thing that happened felt big and scary. Thursday was Max’s hernia repair ad everything went really well.

Here’s how the day went:

4:20am – Max gets his last bottle :( he was a champ and took 85 mL, more than he’s ever eaten in one sitting.

6:00am – at the hospital packing up Max’s things. They don’t guarantee you get the same spot back once you come back, so you need to take everything it of your cupboards.

6:30am – nurse starts Max’s IV, normal saline to keep his fluids up.

7:00am – shift change and the ambulance crew arrives right on time. Max isn’t actually ready to go yet because usually everything is late. John and Lindsay quickly make sure Max is strapped into the transport pod, and we’re on our way by 7:30. So funny to realize that one of the EMTs taking us to the Stollery is an old friend from Crestwood Presbyterian, Jeremy Yacoub.

7:30am – loaded up in the ambulance and I’m allowed to sit with Max in the back. Lindsay held his head the whole ride because ambulances are a bumpier ride than I anticipated

20130727-090142.jpg

20130727-090400.jpg

8:00am – we arrive at the Stollery and head up to NICU. Max gets his bed assignment and we meet our nurse for the day, Karen. Max is awake but not screaming for food (much to my surprise). He stayed awake for most of the morning, and mostly was just curious. This caused Karen to declare (many times) that max was an angel. She was totally convinced that he was the most well behaved baby ever.

11:00am – rounds with the NICU team there, they mostly just said hello and re confirmed his surgery time for 1:30pm. One of the Nurse Practitioners that we knew from the Alex was on rotation there for the past month, so it was nice to have someone who knew Max and had experience with him able to give input while we were there.

11:30am – I ducked out to grab a quick lunch before we were going to take him down to the OR.

1:00pm – back at the bedside. Said hello to some of our old A Pod buddies. The whole group from our first month were all there for various reasons.

1:30pm – porter shows up to take Max down for surgery. Again, he wasn’t ready because we anticipated them running late. Quickly hooked up his monitors and oxygen to the isolette and started off downstairs.

1:45pm – met the surgeon and the anesthesiologist who were both very friendly and explained everything thoroughly. Max got wheeled into the OR and I went off to wait.

3:30pm – starting to feel nervous because everything is taking longer than I thought it would.

4:00pm – Chris is on the way to join me and I still haven’t seen Max.

4:15pm – saw Max in the hallway as they were bringing him back up. He is groggy and out of it, but crying a little and already successfully extubated! Chris arrives and we hold the poor little guy for awhile until he settles down. Initially Max’s heartrate was really high (200-220s) so they were diligent in checking his vitals every 15 minutes for the first few hours. This is normal procedure for babies after surgery anyways, but just to make sure nothing’s wrong.

5:00pm – gave Max a bottle, he’s so tired he only ate about 10 mL.

20130727-091603.jpg

5:30 pm – Chris and I leave max with Karen to go get some supper. When we get back at 6:30, Max is already packed up and ready to go!!

20130727-091719.jpg

6:30-7:30 wait for an ambulance crew.

8:00 heading back to the Alex! Just as Karen is leaving for the end of her shift. I could not believe we only had one nurse while we were gone!

8:30pm – back in our old spot in G pod. They didn’t even move Max’s crib!

9:00pm – still waiting for them to re-admit Max and give his nurse new orders. I got so frustrated waiting at this point because he poor little guy was so hungry. So I went a little bit mama bear and told (a little forcefully) the nurse I was feeding Max no matter what anyone said.

10:00pm I finally head home for the night with Max resting comfortably and sleeping soundly.

0

July 18

What a week! As some of you know already from Facebook, Max had an MRI Tuesday to relook at his brain. All along there has been some speculation that the two halves of his brain did not properly separate, a condition called holoprosencephaly. This weeks MRI has finally been able to see that the two hemispheres are not touching and the only issue we are currently dealing with is the absence of the septum pellucidum, which on its own does not control any function in the brain. The main thing for us to watch for now are any signs of septo-optic displaysia, underdeveloped optic nerves, so far the ophthalmologist hasn’t seen any signs, and the fact that Max opens both eyes and looks around with both eyes is also a good indication that his optic nerves might be totally normal. I met with the neurologist today and he said that what I’m watching for now is the same as a parent with a totally normal brain scan would be on the lookout for. !!! What a relief! These are topics that were brought up about a week before Max was delivered and gave me many worries. Another example of trusting our son to God’s care, he truly is watching over Max.

The day of the MRI was a pretty big gong show. The MRI was scheduled for Friday and got bumped by an emergency. We were rescheduled for Monday and then got bumped by another baby in the NICU that was very unstable and sick, so again we didn’t really mind too much. Finally Tuesday we were scheduled for 12, and got bumped to 2, the nurse and I had Max strapped into the infant MRI transport and ready to go, soothie in tow. The MRI tech woke Max up right before going in by switching the SAT probe carelessly, she grabbed his foot and clamped it, causing him to star wailing…… Needless to say the first try all the pictures were blurry :( they wheeled him out so the nurse could settle him, and then proceeded to make him wait an hour before the next try. We had warned them he would be hungry by 2:30, and they didn’t end up taking him in again until 4. By this time the nurse and I were worried he would wake up screaming for food,but he quickly settled in the machine and allowed them to take some good quality pictures. By the time we got back upstairs the whole unit was wondering where we were and quite relieved to see us back!

20130718-235605.jpg

Now the next thing to get ready for is hernia surgery on the 25th!

Amy Jo

Image
2

July 13

20130713-125353.jpg

Max is getting so big! Everyday it’s getting easier to see him gaining weight, and the memory of that 1.5 lb little boy fades a bit. When I look back through my iPhone photo library I remember those first days and weeks so vividly, but when I’m just spending time with Max, he is becoming more and more babyish with every day that goes by.

His hernia surgery has been scheduled for July 25. We will be transferred to the U of A hospital for that surgery, and hopefully Max will be released soon after that is done. He will be re-intubated for the surgery, so pray that there are no complications. The nurses all say that there is usually no problems getting babies back to where they were respiratory wise, but that in a rare case there are setbacks.

Max’s friends are back in his pod with him, well some of them are. Pray for the little girl who has been Max’s neighbor for the last month as she is in dire need Of a foster family, but so far none of the preferred placements for her have worked out. She has some severe congenital bone issues and needs very gentle and specific care, so that is making it difficult to get her placed.

The original twins that were beside us in A pod will likely be our neighbors when we go to the U as they both require surgery as well. Their surgery is much more intense and will hopefully help them get off the ventilators.

Our other old neighbor is struggling to grow and had to be re-intubated this week. His mom is from up north and as a result does not have a lot of local support. We passed along some of Max’s 3-5 lb clothes as he’s stretching them thin and she was so grateful. Pray he can get back on CPAP successfully and start to pack on the pounds.

Last, one of the second set of twins we had in A pod has moved across the hall from Max. He is growing and on High Flow and thriving. His sister passed away within the first week of their birth, so it is wonderful to see him doing so well.

Max continues to have such caring nurses and we are so grateful for his progress.

1

Happy Due Date Max!

Today was my “official” due date. Max celebrated by finally catching the hang of feeding on his own. It’s like all of a sudden last night at 10:00 he thought, “oh man, my due date is tomorrow and I want to bust out of this joint….. Better eat my food”. Truly Max did turn a corner with his feeding/appetite. He is now getting his food on demand, which basically means, whenever he wants, as much as he wants. So far he had already surpassed what he was normally getting at 8:00 this evening, so he was definitely ready!

Because he’s managed so well with his feeding in the last 24 hours, a lot of pre-discharge things are starting to fall in place. His follow-up MRI to look at his brain is scheduled for Friday, and they think his hernia surgery will likely happen on Monday! So we have a busy weekend getting the last few things sorted out, and hopefully they go smoothly so he can continue to feed well and come home soon!

So on his due date he is weighing 2155g (4lbs 12 oz), and is 42.5 cm (16.7inches) long.

Amy Jo

20130710-234829.jpg

He doesn’t look exactly happy to have reached this milestone, but I like to think he’s smiling on the inside…….