Mother's Day

NICU has a group called NICUPS - it's "graduate" NICU parents who help current parents of children in NICU. For Mother's Day, they arranged to have a professional photographer come in and take pictures of mom's and their babies....here is our picture.

Norah and Isabella gave me a wonderful Mother's Day gift - they recorded a book called Mommy and Me. It's a book where Brian asked them questions and they provided their answers. Some of my favorite are: What do you want to be when you grow up? A mommy and a doctor (Norah and Bella had the same answer) Another one that is funny and tells a lot about my social life since February - What does Mommy do when she's alone? Goes to the doctor :) It has to make you laugh!

Home!!

William got to come home last week - on May 19. He started to gain weight regularly and his reflux was starting to get a little better. On Thursday afternoon, the doctor said we could bring William home that day - yea!!

The first week has gone well so far and William is doing pretty well. He sleeps well at night, which I'm guessing is a combination of him starting to act like a one-week-old and that he doesn't have to wake up to eat. (Even though William is almost 6 weeks old, he acts like a 1 week old because he was a preemie. It's amazing how much of a difference that makes - I have to admit that I didn't think it would be such a large difference)

The girls are so excited about having William home and love all of us being together. They keep asking if we are going to visit William at the hospital and if one of us (me or Brian) will be going to the hospital after they are in bed. I hope they get comfortable with our new routines and with everyone being home soon. It's been a rough few months for them with everything they were used to being basically turned upside down. All in all, they've done a great job adjusting and I'm so proud of how loving they are to William.

It goes without saying how thankful we are to the Lord and the doctor's and nurses in NICU for William's health and having him home with us. I know there is still a difficult road ahead for all of us but I also know that God will guide us through. He has blessed us with three wonderful and beautiful children - for this I am overwhelmed with gratitude to the Lord.


Big sisters - Norah and Isabella

William at home in his bed for the first time exactly 1 month and a day after entering this world

Butterflies and Photos

Today we had baby pictures taken at the hospital - yea :) something that shows we're getting on the road to William coming home! The hospital uses a photography company called Bella Baby and they take wonderful photos. We were able to have pictures of William alone, the three children, and our family.

The rest of the week after the g-button surgery was a hard week for William. He had a hard time recovering from the surgery and has had a bid of a hard time with fussiness. Hopefully, with some of the changes the doctor's have made to the feeding schedule and food, he will start to be more comfortable with the reflux and gas and he will continue to gain weight on a regular basis. These are the main things he has to overcome before he can come home - but if all goes well, he can hopefully come home by the end of next week!

This week, the butterflies in Norah's classroom came out of their cocoons and were ready for release into the wild work of the Shaw neighborhood. On Friday, Bella went to school with me to drop Norah off and we all got to see the butterflies in their netting. Bella went to touch one and was happily surprised when it flew around the net! Her laughter is contagious and was wonderful to hear!

Norah had a good week at school and was able to have a Cardinal's day on Friday. She wore her Cardinal dress that daddy picked out for both her and Bella and had a great day. She only has 2 weeks of school left, it is crazy to think that school is almost done already! She is so big and I can't believe she's finishing her first year of school.

Love, Emilie

Update on Surgery

William had his g-button surgery yesterday and it went really well. The ENT looked at his airway and trachea to see if he could see a more precise reason as to why William aspirates as badly as he does. They weren't able to see anything anatomically wrong and it seems the main cause is the paralyzed vocal cord. He also found that William's tracheomalacia is more serious that originally thought and causes his airway to drastically close when he gets upset. This is why he has a hoarse cry when he is upset and likely why he turns purple and blue so quickly when he gets upset.

The g-button portion was next and went well. The surgeon was able to do the surgery laparoscopically and there are small incisions inside Williams bellybutton and under the g-button. He came off the ventilator last night and that also went well. William also got to have his first feeding last night and it has been going well - and they are gradually increasing his food so he can get back up to the quantity he was eating before the surgery.

One of the greatest things yesterday was that we were able to see Williams beautiful face unobstructed by a tube for the first time!

We also have the good news that William should be coming home soon - hopefully by the beginning of next week!

William's beautiful face!
William after surgery under the humidifier hood

William before surgery in his bouncy seat - happy little man

Weekly Update

This week, an ENT was brought in to look at Williams upper GI and see if he could see anything that would explain the problems he is having with swallowing and the sound he makes when breathing. The ENT found out that his left vocal cord is paralyzed. This has 3 concerns for the doctors: it explains the striated breathing to an extent (the striation is also from the tracheomalacia- his trachea collapses on itself when he gets upset - it's because the cartilage in his trachea isn't fully formed. It will develop over time and is typical of atresia cases), another concern is that the vocal cords act as a 2nd means of defense for fluid to stay out of the lungs. If one is paralyzed, there isn't enough strength to push the fluid up and out of the airway. The third concern is this is the reason he has a weak cry and could have a raspy/softer voice as he gets older. A speech therapist can help with that as he develops.

They aren't sure if this is congenital or tied to the atresia, as it happens sometimes in newborns. There is a chance it will correct itself and if not, the right vocal cord is already starting to compensate for the left one not working.

After the ENT looked, they wanted to do a swallow study as well. That's a real time x-ray and they have him drink from different bottles with different consistencies to see if something would help prevent aspiration. Unfortunately, regardless of the bottle and the consistency, William aspirated on everything. This means that, at this time, it's not safe for him to drink orally. An OT, PT, and speech/feeding therapist will all work with him to develop the muscles necessary to eventually be able to take at least some of his milk orally. (This is only a concern for nipple and sippy cups but not for normal cups.)

The solution for now is a Gastronomy Button (or g-button) which is a tube that is placed inside the stomach and has a button that is secured in the skin of the abdomen. It allows William to be fed directly into his stomach without the need for the feeding tube. This will stay in place until he is taking all of his food orally. The g-button can stay in for years, so it's the best solution for him to be able to come home while he is in therapy for oral feedings.

So, William will be back in surgery on Tuesday for the insertion of the g-button. The surgeon is wonderful - he's the same surgeon who did the atresia and fistula surgery. It's supposed to take about 15 minutes for surgery, but he will need to go under anesthesia again which means he'll need the ventilator again. Since he's been on that twice, and they know what worked the second time to have him off of it, hopefully those steps will work again.

Once William is off the ventilator and doing well, and his g-button is working and he is taking his feedings that way, we can bring him home!! (I'll admit, I'm a little scared because I feel like he's so safe in the hospital and we have all these wonderful people helping with him, but I can't wait to have him home!)

I'll try to post an update after his surgery this week, thank you for all the prayers that have already started and continued for William and our family.

Love,

Emilie

Daddy, Norah, Bella, and William

Mommy, Norah, Bella, and William

Sweet William

Norah, Bella, and William (The girls have been amazing at the hospital - and they love to go see William!)
Sweet baby boy - he loves his pacifier - which is a very good thing!

Norah's 4th Birthday

Today is Norah's 4th birthday - unbelievable!! We had a birthday party for her last Sunday so our families could celebrate and then our family celebrated today. She was thrilled - two parties! Today she kept asking if today "was her real birthday...do we promise it's her birthday?!" She is so proud to be 4 :)

She's into princesses now and was very sweet today when she opened her birthday gift from Brian and me. She got a trunk of dress up princess clothes and told Bella she would share all of the clothes and they played dress up for the next hour - so much fun! They've both agreed that William can play dress up but he needs boy clothes - we'll see if they stay true to their word when he is old enough to play!

Eating birthday cake this evening - beautiful girls and beautiful weather

At her birthday party last week - all smiles

Getting ready to sing Happy Birthday

Her woodland fairy mushroom cupcakes - thank you Lubley's bakery :)

William and the Girls

Overall, this was a good week for William. We not only received the good news that there are no leaks in the esophagus and trachea, William also got to have his ventilator removed on Thursday of this week. He has been doing a good job of breathing on his own, with the exception of during bottle feeding and when he gets very upset. He has a tendency to hold his breath when he gets upset and had a "blue spell" this week and had to get another Epi treatment.

On Friday, they tried to start bottle feeding, but he doesn't want to swallow. He drank 5 ml from each bottle (they tried 3 times) but the rest had to be put through his feeding tube. It's not a bad start for bottle feeding, but the bigger issue is why isn't he swallowing. Obviously it could be an issue of tenderness still from the surgery, it could be that he hasn't felt that sensation before, or it could be something else entirely. He also has a hard time breathing when he tried to take a bottle, so an ENT is coming in on Monday to take a look at his trachea to see if it's an inflammation issue from the ventilator, the surgery, or again - something else that hasn't been seen yet.

We found out on Friday that he also has an infection in his trachea - likely from the ventilator - so they started him on antibiotics. Hopefully that clears up easily and he doesn't get sick anymore.

His jaundice levels were high on and off throughout the week, so he got to sleep on a bilisoft blanket and have the bili lights on. Early this morning, he was able to get those turned off and is happily swaddled now :)

He is a blessing and gives these little smiles and funny facial expressions to us - he especially likes raising his eyebrows :) We can't say enough how grateful we are to all of his medical teams, this would be so much harder without them. The same can be said of all our family and friends. William has been on so many prayer lists from the time he was 5 weeks in gestation - we are more thankful than words can say for all the support and prayers.

The girls have been great through all of the hospital visits too. We hear from all the nurses how well behaved they are - thank goodness for Magna Doodle and Color Wonder :) We're doing what we can to develop somewhat of a "normal" schedule for them and try to get them up to see William at least every other day. They both love to sing to him and put their hands on his feet or his blanket. He'll be so "mommyed" when he comes home!


Norah and Isabella building a wonderful princess castle!
William off his bili lights for some snuggle time with Mommy
Bili soft blanket and bili lights - "Blue William"
William's first bottle