an update that is long overdue

I apologize that it has been so long since our last Milo update. I have been letting it slip my mind for months and just assumed no one was checking in. But after a few requests for an update I am finally getting around to it.

We celebrated Milo's first birthday at the end of last month. since it is already in the triple digits here in AZ we opted for a pool party, which he loved. Bath time is a hit around here and a pool basically being a giant bath tub it was love at first sight. He is meeting all of his milestones for his adjusted age (10.5 months) and most of the milestones for his actual age, so he is closing the gap! He has been crawling, climbing, standing, and scooting all over the place. Some days it is nearly impossible to keep up with him so I frequently take him to a nearby children's museum to help him burn off extra energy and learn new skills by watching 'big kids'.

He is starting to develop a taste for solid foods and thoroughly enjoyed his coconut flour cupcake with chocolate frosting on his birthday. His favorite foods are meat, broccoli and potatoes; as well as anything sour or tangy like lemons, oranges, and sauerkraut. He now has two teeth (on the bottom) which are just precious until they catch your fingers and try to bite a piece off.

Milo loves to read books, well two specific books, Go Dog Go and Hand, Hand, Fingers, Thumb. He enjoys turning the pages but if the book is too 'boring' he slams it shut and crawls away. In contrast, if he even hears you whisper the title "Go Dog Go" he will come crawling over to you like a maniac. Every. Single. Time.

It has been such a joy watching him grow and investigate the world around him. He is so curious and has the biggest smile which he shares with anyone he sees. He loves to people watch and wave at passerby's; every time we go out people stop and comment on his radiant smile and charm. He is such a happy baby and I feel incredibly so blessed to be his mama.

It is always hard to pick which pictures to share with you all with so many good ones and since it has been MONTHS since my last update I am adding a bunch. However, I have finally joined the world of instagram so if you would like more regular updates and pictures feel free to follow us at jessicarae.rupp :)

                                                                   first christmas

 Road trip to Greer, AZ

 Left: Day of discharge about 2.5 months old Right: his first birthday

                                                         Happy Easter!!!

                                                        Looking through his baby book

 Playing with his best friend Mickey (born on the same day) at the children's museum

                                                      More fun at the children's museum

                                                       Then and Now

                                                            He loved his first cupcake

5 months old!! (Almost 3 adjusted)

I can't believe it has been 3 months since milo came home with us. Some days it feels like last week and other it feels like a distant memory. Last week was the NICU graduate Halloween party. It felt weird walking back in to the hospital without feeling anxious. It was nice to see his doctor and the many nurses who watched over Milo. Although at one point Milo was asleep on my chest and the doctor who set us back a few days on leaving came up to say hi. As soon as she started talking Milo got this huge pouty lip on his face. It may have been a coincidence but his doctor said she gets that a lot an tries not to take it personally ;) 

Milo went as a turtle :)

We also took Milo to a local farm to play in a corn maze, explore a petting zoo and get a pumpkin (basically take pictures of

my cute baby in a pumpkin patch).

Milo weighs well over 11lbs now and is a dedicated thumb sucker. I have exclusively pumped for him since he was born but as my supply was dropping . So with the help of my local la leche league and a lot of frustrated tears (from both Milo and I) he is now exclusively nursing with just the occasional bottle if home alone with dad when hunger strikes. 

He is getting better at head control and loves to stare at bright lights and fans. He has a favorite toy and is getting better at grabbing things and waving them around. He smiles all the time and is such a happy baby. I often go back to many months ago when we were told out baby wouldn't survive and I just stare at him in awe and wish I could go back and tell

myself that the doctors were wrong. Our baby doesn't die and is in fact a beautiful happy boy and here are the pictures to prove it. 

His name may not be Selah but every time I look at his smile I pause and praise God.

Done Waiting

Milo finally came home last Sunday August 4th; one day after his due date. He left at 4lbs 14oz and is already up to 5lbs 5 oz. he is growing, eating and sleeping well. 

Yesterday I was sitting down staring at this beautiful baby, reflecting on these past few months. Mainly on just how sick he was in those first few days and how many doctors and nurses told us he was lucky to even go home at all. Most of his problems early on were due to the knot in his cord. I then realized PPROM saved my baby's life. The doctors told us the knot must have been tied when there was still fluid. It wasn't pulled tight until a few days before he was born, It got me thinking that if my water hadn't broken and he was free to move about it could have tightened sooner and possibly killed him or at the very least caused severe brain damage. 

So I thank God my water broke so early, I thank God for this beautiful boy in my arms and I thank God for using the hard times in the NICU to bring me and my husband closer. 

I can not thank you all enough for the encouragement and many prayers you have continuously sent our way. Someday I will get to tell milo all about his birth story and this blog to show him all the love and support that got him through his rough start in life. I will continue to post regular updates on Milo and of course lots of pictures. Here are a few if his first week at home.

Milo finally meeting his BFF

Just about ready!!

Milo has recovered nicely after his surgery. He didn't have any more episodes and was back to his normal self yesterday and is even better today. We finished up everything we need to be discharged and milo even took his carseat test :) the only thing that may hold us back is that his doctor forgot to write up a prescription for his oxygen for him to go home with. Hopefully we can get it sorted out first thing in the morning but otherwise we may not be going home till Saturday. So please pray everything goes smoothly and this time tomorrow we will be home with our little boy! 

Milo's Surgery

Milo had surgery to fix his hernia this morning. The procedure was a breeze and over with in 20 minutes. 30 minutes later his nurse gave him a little morphine for pain and his eyes immediately glazed over and was motionless. The doctor came in and got him back to normal and decided the half dose of morphine was just too much for him. A few hours later his nasal prongs (just used to give him a boost since he has been off oxygen for a few days) fell out and he just stopped breathing. His sats dropped to 14 (normal sats are around 98) and his heart rate to the 70s (normal heart rate around 150). John and I were asleep when his alarms went off and 20 people rushed into his room. It was absolutely terrifying but they finally stabilized him and got him breathing again. He had lots of mucus in the back of his throat which probably contributed to the situation. Please pray that the rest of his recovery is uneventful. He was due to come home Thursday or Friday and now we are not sure what will happen. Even though his time in the NICU has been long, it has been relatively smooth sailing.

Nearly There!!!

Home is just around the corner for us and we are thrilled. Milo got his feeding tube taken out two days ago and has been off oxygen since 2am this morning. So far so good and if it weren't for his hernia we would be headed home in a day or so. He will need surgery to fix his hernia before he leaves and we are hoping a spot will be open either Monday or Tuesday. We are told it will be a quick recovery and won't hold us back too long before heading home. 

Milo is eating well now that he is off the  oxygen. He stopped eating once the feeding tube was out and we had no idea why. Turns out he hated the formula they were adding to his breast milk and the nasal prongs were actually making it harder for him to breathe once his oxygen settings were so low. Now that he is off it all he is back to his normal hungry hungry (baby) hippo self.

Milo in his new bouncer/swing

No more tubes!!

One step closer

Note: this was supposed to have been published on the 18th not sure what happebs) 

Milo is now almost 38 weeks adjusted and is becoming very active. He loves  being held and is awake more often during the day. He likes looking around at his surroundings and watching the nurses coming in and out if his room. He took his first full bottle the other day and continues to take at least half by bottle at each feed. I hate calling it a "feed" because whenever the nurses say he drank X amount during his last feed, it makes me think of little baby vampires. 

He has also just started breast feeding and he is really good at latching. Sucking is harder for him because he has a very short tongue tie at the tip of his tongue. This prevents him from bring able to stick his tongue out. He may need it clipped to help make breast feeding easier and to prevent speech issues later on. 

The nurses also noticed he may have a hernia that could require surgery. He is getting a consult tomorrow and hopefully it won't be bad enough to need an operation. If the hernia doesn't set us back milo could be home within a week or two!! While our stay has been nice and we found a nice rhythm, I am eager to move forward and have him home :)

His room is ready and waiting!!

This is the co sleeper we made to keep him close but not too close ;)

Milo rockin the bottle 

Milo was great during his hearing screen which he passed :)

His "I'm working on a giant poop" face