Sunday, March 22, 2015

Hooligans

The little dragons are definitely pushing their two-going-on-three boundaries. They can be loud, wild, and unpredictable; hilarious, sweet and cantankerous. They manage to get into a little trouble here and there. 


Here's what they've been up to lately.

-Screaming matches at the top of their lungs, enough to cause some degree of hearing loss. It's usually temporary, thank goodness. 
-Maisie found the largest knife in the kitchen and brought it to me. She was not harmed thank goodness but it scared the living daylights out of me. Note to self- do not leave anything on the counter. 
-James loves to play with the mini blinds, guitars, and drawers. 
-Food throwing is always a blast. The kids are usually required to pick up their food, clean it off the walls or other places where it is stuck. We try to keep it to a minimum but sometimes the little dragons get the best of us and the entire kitchen is a disaster. The only way out is to remove the perpetrators. 
-Helping with the laundry is so much fun. The little dragons throw socks all over the house if you'll let them and clothing too. 
-They love to empty the pantry, especially all of the toddler cups/bowls/utensils and hide them throughout the house. Sometimes they are "cooking" applesauce, sometimes eating "soup". We are lucky that they've yet to get into the rice or our 25lb bag of GF flour. I should knock on some wood. 
-They both love to open and close doors frantically. We've been lucky to only have a few minor incidents so far. 
-Lots of hitting, punching, kicking, etc- the little dragons are definitely exercising their ability to handle things physically. 
-Lets not forget the verbal altercations. While there isn't name calling (yet) aside from stern "Maisie!" or "James!", the little dragons use a lot of "stop it", "go away", "don't touch me", etc (we think that one came from "Frozen"). They are great at keeping each other in check and also letting us know that their twin is into something bad. That is, unless they are both in on the shenanigans and then we don't hear anything. 
-Nap anarchy: we all depend on consistent daily naps to function. The little dragons are exercising their independence with nap time. Most of the time it is fine but other times they do nothing but play and scream and pass the time giggling up a storm. Following non-naps, the kids are tired and emotional. They spend the afternoon and evening collapsing in fatigue and exhaustion or fighting off fits of tears and rage. It's pretty clear we all still need nap time. 

But for all the toddler craziness, there is a lot of love in this house. The little dragons are full of tenacity and love. They have a strong connection and never hesitate to show their care or concern for one another. Perhaps this is the best part about having twins, even when they manage to test your parenting abilities. 



Thursday, March 12, 2015

Back to normal

Everyone is getting over RSV. Maisie is feeling much better and no longer needs oxygen during the day or night. She does get easily winded with exertion but this is expected. She is pretty much back to her old self, with the exception of being very grown up right now. Sometimes I look at Maisie and wonder where my little 1lb 11oz baby went, because she is just so grown up. 

James is doing really well too. He has been getting stronger physically and we are still working towards walking and standing independently. He is close to taking a few steps on his own. With James, it's slow and steady wins the race. He does things deliberately, thoroughly, and plans everything out. He is so incredibly smart and I love watching him communicate and learn. 

We are doing fine - just tired - and trying to recharge from the last month of procedures, sickness, doctors, and hospitals. It's hard to recharge your batteries, so to speak, when you are a parent. We are lucky that the little dragons are good sleepers, have great appetites, and have adapted very well to the chaos of being sick and out of their element. Schedules are everything with toddlers and they managed phenomenally well through it all, then made it back to their normal routine without incident.  

The little dragons are definitely taking advantage of our fatigue, probably unknowingly. Today I was resting following a root canal, and Maisie came over to take care of me and said she wanted to make me feel better. She brought over a baby wipe and held it on my forehead - and it felt great besides being so very sweet. It is amazing what kids pick up from all of their interactions and adventures. I sat there for a while with Maisie cooling my forehead and cheeks. 

After several minutes I realized the baby wipe was full of James's boogers. Ew!

Sunday, March 1, 2015

32 months old & finally home!


Phew! We are all together under one roof. Maisie was discharged today with amoxicillin, albuterol nebulizers and oxygen. She was doing pretty well on room air but at home Maisie needs between 3/4 to 1 liter of oxygen due to our altitude of 9,000 feet. 

Maisie is nearly back to her usually feisty self. She is a little short on energy and and only wants to eat junk food- but we will take it. James is doing great and had an awesome time with Jimmy's parents. They were so helpful with James, allowing us time to be with Maisie while attending to work and home obligations; during lots of crazy weather and many unknowns day to day at the hospital. The little dragons are both very happy to be home. James is enjoying playing with Maisie's Elmo balloons and Maisie is trying to not get caught up in the oxygen tubing. 

This was such a long week; actually, nearly two weeks now if we count when James came down with what we now know was RSV. We are thankful for flexible work schedules and family who was able to pitch in at a moment's notice. We are tired and fighting off the same infection that made both of the kids so ill. We are thankful for the many thoughts and prayers and well wishes for our family during this time. We feel loved and cared for, and we are very glad that Maisie has recovered enough to be treated at home. We are ready to sleep in our own beds, clean our house, and find normal again. 

***
Maisie:
Book: Berenstein Bears go to School
Song: She loves the songs from Frozen
Words: No, mine. She also has started to say some interesting words/phrases like "it's complicated" and "it's dangerous". Sometimes we have no idea where she comes up with things. 
Toy: Little people, dinosaurs, baby doll. 
Food: cheese, cookies, pancakes, waffles, eggs, avocado, fruit snacks, blueberries, beans, rice, tortillas, quesadillas, Indian food, chips
Animal: dog, kitty, monkey
Time of the Day: taking a "blath"
Activity: climbing and running
Color: blue
Clothing Size: 12-18 months, 18 month PJ's. 
Shoe Size: 5.5-6
Weight: 21lbs at last checkup on 12/11/12, but she probably lost some during this last hospitalization. We will see during the checkup. 
Height: 32 inches
Number of Teeth: 19+



James:
Book: ABC by Dr Suess
Song: "Stompy the Bear" by Caspar Babypants, Anna's songs in Frozen
Words: James is pretty talented with learning other languages. He can say "please", "thank you", and "yes" in French. He can say "hurry up, sister" in Italian. 
Toy: Currently James likes the click-clack ponies, his num-num balls, and any football. 
Food: pancakes, waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, pasta, rice, pizza, chili, tortillas, cheese, Indian food. 
Animal: dragon or bear
Time of the Day: bathtub time.
Activity: putting away toys
Color: green
Clothing Size: 12-18 months. James is wearing 18 month PJ's now, and we are getting to 12-18 month pants due to length. 
Shoe Size: 5.5, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 6.5 extra wide. 
Weight: 20lbs at last checkup on 1/22/2014
Height: 31.5 inches
Number of Teeth: 19+




Friday, February 27, 2015

Waiting

Maisie is still in the hospital. She was admitted Sunday night with a confirmed case of RSV and bronchiolitis. We thought for sure by now that she would be home, and while we had a few close calls to discharge, Maisie is still here. She is where she needs to be and we are confident in that. 

She spent the beginning of the week with high temps and 3 liters of oxygen and they were able to wean the oxygen down to 1-1.5 liters. At times she got down to 1/4 liter but that was short lived. Her temperature has been hovering around 99-100 and everyone expected it to be gone by this point. On room air, Maisie drops to the low 80's within a matter of seconds; and at this rate Maisie is not able to go home even with oxygen. She would need to have consistent saturations in the 90's and oxygen less than a liter here preferably before we are released. Today they started steroids in addition to albulterol and CPT to help Maisie overcome the roadblock she is at. We discontinued Hypertonic Saline as we can't administer this at home. 

To top off her respiratory complications, Maisie became very dehydrated over the last few days due to her RSV and the fevers associated with it. Dehyrdration causes Maisie to have trouble coughing and loosening the secretions in her lungs, which causes breathing trouble and low saturations. She was drinking moderately well enough but her fluid intake was not sufficient to compensate for the fluid loss. Her intake decreased over the week and yesterday we opted for an IV to help improve Maisie's hydration and help move the secretions from RSV. 

Finally, we found out that Maisie now has an ear infection so we started antibiotics. They are watching her closely. 

All of this combined means that we are still in the pediatric wing, at least for tomorrow and perhaps maybe longer. We really have no idea. 

And James? He has been having a ball with his grandparents all week and is feeling much better. It still floors us to think that his lungs are so much better than Maisie's, given his history.

Tuesday, February 24, 2015

RSV

After two years of Synagis shots and doing everything we could to keep our former preemies quarantined during flu season, both came down with RSV or Respiratory Syncytial Virus. 

We thought they had just acquired a bad cold, most likely exposed at some point during James's MRI at PSL late last week. James came down with symptoms first and was treated first. He then passed it along to his sister, who unfortunately has the more fragile lungs of the two. 

Maisie went downhill late Sunday night. She was unable to uphold her oxygen saturations during nebulizer treatment and would go into the 60's, requiring more oxygen to get her oxygen to sufficient levels. Her hands and legs were ice cold, a sign that she was not perfusing effectively. Maisie went from needing 1 liter of oxygen to 4 liters in a matter of an afternoon. 

We made the decision to go into the ER late Sunday night. We prepared our things and got James ready to spend the night with Jimmy's parents. Jimmy did a quick run of the driveway with the snowblower, and after buckling the kids in their car seats we were off. 

The roads were manageable but icy so we took our time heading to Denver. The closest pediatric ER was Swedish and we were on our way. Maisie started out fine but during the drive she became lethargic and sleepy. I hooked her up to the pulse ox and saw that she had oxygen saturations in the 80's at 4 liters of oxygen, the max in our tank. Her heart rate was in the 30's and I did everything I could to keep her awake and responding to me. I kept the pulse ox on her and monitored her the whole way down, knowing that we were on a really fine line.  Luckily Maisie responded pretty well, watching videos from Frozen and looking at pictures of she and James playing together. 

By the time we got to the ER, the team checked her in right away and made sure she was stable. It turns out she had a very high fever, which must have materialized during our preparations and our trip down but was masked by her cold extremities. She had a temperature of 105.9 upon admittance and was immediately given Ibuprofen and a nebulizer and oxygen. We were told she would be admitted and that they would run tests for the flu and RSV. 

We spent late Sunday night, Monday, and Tuesday in the hospital with Maisie. She had a positive RSV test (and therefore, James had it also). She had fevers ranging from 99-104.5 and was on a pretty steady 3 liters of oxygen for the majority of her stay. Only today have they been able to wean on her oxygen and make progress towards a possible discharge later this week. She is lethargic, at times restless, but doing pretty well. 

The hospital staff is only doing one new nebulizer medicine, called Hypertonic Saline, which has really helped Maisie. Additionally we are doing the "Vest" chest physiotherapy to help loosen secretions in the lungs. Both have been helpful. Otherwise they are continuing all of the treatments that we had been doing at home. It is nice to know we were on the right track, but tough to be in the hospital with one kid. We are lucky to have Jimmy's parents who are still watching James while we are with Maisie. Thankfully James is pretty much recovered from his RSV and pneumonia. 

I wish we never had to do this RSV a business but it is another cost of having preemies. The nurses here say that even a term infant doesn't have the same risk factors as a preemie / former preemie when faced with RSV. I only wish we could have avoided it, but with the number of people infected right now and increase in hospitalizations currently it doesn't surprise me that we came down with RSV. 


Sunday, February 22, 2015

Sick little dragons

We have been stuck at home with a big winter storm and two very sick little dragons. James's fever and stubborn cough turned into pneumonia and he went on nebulizers and antibiotics Thursday night. He needed supplemental oxygen to keep his saturations up through the worst of the illness and continues to use oxygen while sleeping. James started to feel better by Saturday evening but he is still not 100%.  

We were hoping that Maisie might be able to escape this one but by Thursday night she started to have the fever and a light dry cough, which mimicked the beginning of James's symptoms exactly. She continued to go downhill, and so we worked on getting emergency prescriptions and oxygen refilled at the last minute Friday night to prepare for a weekend at home. Maisie went on the same plan as her brother; nebulizers every four hours and antibiotics, Tylenol to help bring down her fever and make her comfortable, saline and suctioning, cool mist humidifier, and oxygen to keep her saturations up. 

We setup a triage in the living room so we could better treat and manage the little dragons' symptoms over the weekend. Luckily we have been able to effectively treat both kids with our in-home equipment. We are also dealing with a lot of snow and very frigid temperatures so we have all fingers and toes crossed that things continue to improve here and no additional treatment is needed. 

Wednesday, February 18, 2015

Valentine's Day and other goings-on

We've been up to a lot recently. Here's a break down. 


1. James had an MRI to check out the status of his spine and the arachnoid cyst. Everything looked great and there was no evidence of the cyst reappearing on the spine. James's neurosurgeon couldn't even tell where the operation or cyst had been in the first place! We don't have to follow up from a neurosurgery perspective for another year. 

2. James checked in with the spasticity clinic to see what progress he has made since the Botox and Phenol injections. The providers all were very impressed with James and felt we didn't need to go back for another 6 months. He got his new orthotics and we are hoping for the best with this pair!

3. Our trip to PSL was James's 13th time being under sedation. Boo. While everything went pretty well and there were minimal complications - he only had a minor vomiting episode in recovery - it is becoming apparent to me that we are quite too familiar with this process. The forms, the questions, the protocols. The paperwork doesn't have enough space on it for James's patient history and I find myself referring to a list versus going off the top of my head to avoid missing something. We know all of the anaesthesiologists, doctors and most of the nurses. While we are certainly on the healthy side (knock on wood) and most of his procedures were done in the NICU, I sincerely hope that we continue to trend downwards. 

Personally I never had surgery until my cesarean when the babies were born. I'd like to hope the little dragons have less medical difficulties as they get older and don't have to be "frequent fliers" at PSL or Swedish for any reason. Really, things are pretty good. Both kids aren't on any type of medication and they are really stable medically given their fragile start.  

4. We semi-celebrated Valentine's Day. My parents dropped by and gave the little dragons gifts which they are very much enjoying. We did a craft project and ate chili. It was low key but we had a good time as a family. 

5. We got a few feet of snow and enjoyed being snowed in. We are so thankful for our flexible schedules and being able to work from home in times like these. Over Sunday night to Monday evening we got over two feet of snow  in addition to the residual stuff that was left from prior storms. The little dragons got bundled up in their winter gear and went outside for a brief experience in the snow. James didn't like it and Maisie made a snowball and dumped it on James's head. We were inside five minutes later. 

6. Every time we are at the hospital it seems like we pick up some mystery illness. Last time Maisie got a fever and was under the weather for a few days. This time it's James. He is definitely not feeling well and we are watching him closely.