Celia & Isabel

Tuesday, October 22, 2013

Almost 2!

And here is one more post I had saved in drafs ... attempted to re-start this blog in March 2013 and just officially getting back to it now in October 2013 but figured I would post this one as well :)

The girls will be celebrating their 2^nd birthday on April 21, 2013, so I figured it was due time to update our long, lost blog! It’s incredible what a difference a year and a half can make – looking back at old posts, I almost forgot all of the emotions, trials, ups and downs that came with their entry into this world. It feels like another life. Which I remember dreaming about while we were going through it all …. I just couldn’t wait for the day that the girls were normal, healthy babies. And here we are – now toddlers!!

So much has happened I am not sure where to even start. I guess we can just focus on the present. We recently moved from our beloved 2 bed condo on Sunnyside in Lincoln Square into the NW suburbs of Chicago. Park Ridge has been our home since May, 2012 (well actually Feb, 2012 when we lived with Sam’s parents for a few months while we looked for a house)! I went back to work full-time in February of this year. We hired an amazing nanny, Sarah, who has made the transition from stay-at-home mom for the past 22 months to full time worker as smooth as it could be. I am still adjusting to this new routine, but at the end of the day, it’s best for everyone. Sam is still at Slalom and celebrated his 4 year anniversary recently. Sonny is still Sonny … sleeping, eating & getting in the middle of everything.

And the girls – OMG are they amazing. They are so full of energy and life and are keeping us busy! It has been so cool to watch them grow up together – they are best buds and really don’t like to be apart. I remember people saying “if you can get through the first 6 months, it’s almost easier to have twins.” I am going to double that time frame, but after we made it past the first year, I am so grateful for the gift of twins and we are now reaping the benefits. You can never put a price tag on a built-in-playmate and two distinct personalities to entertain you.

Health wise, we couldn’t have been more blessed. The only side-effect of their prematurity is with Celia’s lungs and her bouts of upper respiratory infections. I have a lingering suspicion she might develop asthma of some sort. She also, for as long as we can remember, wakes up a few times a night with little cries that last 15-30 seconds. It’s something we thought she would outgrow and are considering doing a sleep study to get to the bottom of. Aside from that, she is growing (around 23 pounds today), she has 8 teeth and 4 molars, and healthy head of curly hair. Isabel has really been a power trooper since coming home from the hospital. Aside from your typical cold and small fevers, she has been about as healthy as any full term child would be. It’s actually amazing considering she was definitely not ready to be born back in April 2011 (she had to be induced and was delivered 2+ hours after Celia). As I am writing this I am tyring to think of “what else am I missing” but the beauty is – nothing. That’s all there is to report on health.

The girls continue to get therapy services 3x a week through the Early Intervention program. We see a speech therapist, a physical therapist, and an occupational therapist – all who come to our house and spend 1-1.5 hours with the girls to make sure we are hitting milestones. We have been so proud of how quickly they are catching up to their actual age. There are still some areas where we might be a little behind (for example, they are a little ways to talking in full sentences, they haven’t grasped jumping yet, they could do better with ball skills, etc.) but for the most part, our therapists are amazed and extremely happy with their progress to date. They may be little – but boy can they keep up!

Personalities – boy oh boy do they have personalities! And they are so different from each other. I have to say I am 100% a believer of nature versus nurture. These girls were raised the exact same way – from the same food, to the same sleeping schedule, to the same mommy & daddy time, etc. and they couldn’t be more different. Celia is our sweet, cuddly one. She listens well and doesn’t like to test the waters too much. She gets so upset when we get mad at her. And she’s funny! Her laugh is heartwarming to hear. She likes to suck her thumb, loves to drink milk and is becoming a more picky eater as she gets older. But with all that, she is also a bit of a bully to her sister – always taking what she has. But she will also share on her own, so at least she has that going for her ;) Isabel is our drama queen. She is a Daddy’s girl 100% and knows how to sneak her way into and out of things. She is a character – her facial expressions are priceless and her giggle is contagious. She loves her paci and bunny and loves to carry around an army of stuffed animals with her. She is a great eater and continues not to be a huge milk drinker. And she's adventurous! Climbing, dissecting, overturning everything. She doesn't like to sit still! Both girls continue to show their independence and attempt most things on their own before asking for help. Their favorite cartoon is Bubble Guppies. They are becoming quite the artists and love coloring at their little table that nurse Tina gave us last summer. And they also adore their cousins. It’s incredible to see kids learn and feed off of each other.

As we look to celebrate their 2^nd birthday, we are no longer ever in fear of what’s around the corner with them. We are in a “safe” place and know that their prematurity in the end, was meant to be and will forever shape their life. Our little warriors.

Things get easier every day

Here is an old post I had in "drafts" from October 2011, guessing I wrote this about a month after the girls came home from the hospital. Not sure why I never posted it so here it is :)

It's a whole new world over at our house. The girls have made amazing progress in the time that they have been home. Here's what we have gotten RID of.
- Isa's NG feeding tube! After a few days in a row of Isa pulling her tube out, and me replacing it daily, we decided maybe she was trying to tell us something. It was time for her to figure out what eating and getting full from taking a bottle meant. It actually made us kind of sad realizing that since she has been eating, she had only had one day in her entire life in the NICU without a feeding tube (as a test to see how much she would eat). She was never given the chance to understand that getting full comes from eating a bottle only since we would always tube whatever she didn't take on her own. It took her a few days to figure it out, but we are three weeks into no feeding tube and she is gaining weight perfectly. Ideally, we want to see her gain 20-30 grams per day, and as of last doctor visit, she is gaining, on average, 25 grams per day! She isn't eating the full amount the "chart" says - the chart says she needs 22 ounces a day, and she logs in anywhere between 15-20 ounces but that seems to be working for her. Getting rid of the tube has made a HUGE difference in our day and she looks so pretty without all that stuff on her face :)
- Fortifier - it's been a while now, but we no longer fortify breast milk, just formula.
- Diuretics - as of our check in today at the Pulmonary Hypertension Clinic, the girls no longer need their diuretics! We will get the results of the ECHO tomorrow but from the preliminary results and the doctors assessment, the girls current dose of the medications most likely is doing nothing at this point and they should be OK without them completely. If we notice swelling, trouble breathing, slowing down in eating, etc. we will need to regroup with the team and see if the medications need to start again but we are all hopeful that's the end of them.

Both girls are smiling and Isa has let out a few giggles too. Both still roll from tummy to back every now and then, make excellent eye contact and have great neck support. We had our follow-up with the Physical Therapy Clinic a few weeks back and the girls are right on track for their adjusted age and we won't need to be seen again by PT until the girls are 6 months adjusted in February. Lia still will get her eye checks, the right eye is clear but the left still has a ridge that they see. We go again in late November (graduated from going every 2 weeks to a 4 week stretch now) and fingers crossed it's our last. Right now the ladies are stringing together anywhere from 4-7 hours of sleep at night. As of Thursday, they weight 9 lb, 15 oz (Lia) and 9 lb, 5 oz (Isa).

Saturday, October 8, 2011

Homecoming

I am sitting here drinking a cup of coffee (with Almond Milk in it but we will get back to that later) thinking about how incredible it is that our NICU stay is now behind us. After 133 days in the NICU, Celia came home on Thursday, September 1st. After 151 days in the NICU, one day short of their 5 month birthday, Isabel came home on Tuesday, September 20th. Leaving the NICU for the final time was such a weird feeling. Along with being overjoyed, Sam and I strangely enough also felt some deep sadness. The NICU had become our home away from home for so long and we had formed such incredible relationships with the nurses over that time. But we soon started to realize that our children were not supposed to live in the hospital, we would continue those relationships outside of the NICU and that our "normal" life was finally going to begin.

Celia, born 1 lb, 4 oz, came home weighing 7 lb, 5 oz. As of yesterday, she is up to 9 lb, 3 oz and 19 1/4 inches long. Isabel, born 1 lb, 5 oz, came home weighing 7 lb, 11 oz. and as of yesterday is up to 8 lb, 8 oz and 21 inches long. Both girls came home on Prevacid for their reflux, 2 diuretics for their pulmonary hypertension, 22-calorie fortifier and a multi-vitamin. At times, it feels like we are still in the hospital with all of the bottles, syringes and measuring tools in our kitchen. Isabel also came home with an NG feeding tube. For follow-ups, Lia still goes to the optometrist for her ROP (stage 2, zone 3 in the left, all clear in the right and the left is still expected to fully resolve on its own), and both girls go to physical therapy, the pulmonary hypertension clinic, get lab work and frequent visits to the pediatrician.

Milestones - we are already reaching them! Lia first rolled over from tummy to back on September 11th and Isa did the same on October 1st. Isa smiles all the time and is so good at focusing, looking at you in the eyes and following things. And this isn't a milestone, but after a very difficult first few weeks home with Lia (crying non-stop, very irritable, fussy beyond belief), we discovered both girls have a milk protein allergy (found by blood in their stools) and were having bad reactions to the cows-milk based formula we are supplementing. We moved them to a hypoallergenic formula, stopped adding a milk-based fortifier in the breast milk and I cut out dairy & soy from my diet ... and it has made a WORLD of difference. I do miss that cheese though!! This allergy is something the girls should outgrow and I can start enjoying that pizza & half-n-half in my coffee again around 9-12 months of age. Speaking of age, this is something we are always asking. When are the girls considered their chronological age (close to 6 months) and when are they considered their adjusted age (2 months old)? And when strangers ask, "Oh, are they newborns?" how much do we get into the story? Answers are, we need to go by their adjusted age for everything except for immunizations, and to those strangers we nod and say, "Yep, they are newborns."

The girls are so different from each other. Isabel continues to be our laid back lady - she is so content and can entertain herself easily. Celia is still our little nut - she is very determined and wants what she wants immediately or all hell breaks loose.

The girls are getting better at sleeping and understanding days from nights. It took a lot of trial and tribulation, but we have our bedtime routine down (bath, breast milk bottle, sound machine and low lights and down around 10 or 11 pm) and last night the pulled together a 6 hour stretch! During the day we try to get tummy time in, move around from swing, to bouncy, to crib and back through rotation and are taking advantage of the Indian Summer going on in Chicago right now to get all the fresh air we can before winter. I never could appreciate until now how incredibly hard it is to have twins! Being out numbered is hard, and adding in all the little extras for us (feeding tube, meds, doc appts, etc.) brought Sam and I to the decision that I would resign from my sales position at CafeMom and become a stay-at-home mom for a few months while we get everyone on track over here. While I consider this more than a full time job, I am excited to be the primary care taker of those ladies during the day and help them to grow to happy, healthy and smiling little girls.

Cheers to our new life!

Celia's first meal in her new room.

Celia with Grandma, the baby whisperer.

Our first walk with Mommy!

Sonny keeping watch over Lia.

Isa enjoying some fresh air in her bouncy.

Isabel & Celia

Isa fresh from her bath

Isa all dressed up ... where's the party?!

Gangster

Isa sooo happy after pulling her feeding tube out ... again!

Lia sleeping

Celia ready for her walk

Celia in her Sunday suit

Thursday, August 18, 2011

the babes

Tuesday, August 16, 2011

Day 117 and Counting

Now onto current updates. So what's new since our very, very old post on 7/27 ... lots! Some steps forward, some steps backwards but today we are back in a good spot. A few things that are not "status" related. The ladies definitely have their own, very different personalities. A few words that are often used with Celia are "aggressive", "funny", a "maniac", "just like Sam" and of course, "beautiful", "cute", "love", etc. etc. Isabel on the other is often described as "content", "curious", "calm", "just like Rachel" and of course, "beautiful", "cute", "love", etc. etc. Isabel likes to take everything in while Celia is the one making things happen. We are going to have our hands full once they get home ... which we will welcome with very open arms.

Onto their health status' starting with the gal who got this whole party started.

Celia
- Growth: 6 lbs, 5 oz, 17.6 inches long

- Eyes: The left had had progressed to stage 3 ROP, but as of today, both eyes are back to stage 2, zone 2 which is great news. The doctor still believes this is a classic case of ROP which will ultimately correct itself and not require treatment. Timing wise, we should start to see major improvements within the month. There is a "small" chance the ROP will get worse again, but staying positive it won't. She will still get weekly checks in the meantime which will continue when we are out of the NICU as well until we can say she is 100% clear of ROP.

- Eating: we are up to 52mls, 24-calorie fortified breast milk per feeding. She has no more feeding tube and is doing all the work on her own.

- Pulmonary: we had a follow-up ECHO last week and it appears her pulmonary hypertension is slightly improved which the doctors were very happy with. We will continue to be followed outside of the NICU for this but it's something that she can and hopefully will outgrow and can have no long term health effects.

- Physical Therapy: she gets seen 1-2 times per week and is doing great! They look for symmetry and resistance to pressure which she scores an A+ in.

So what is keeping her there? Eating, eating and eating and breathing while eating. We were warned that this would be one of the more stressful times during our stay and they were right. What we can do is encourage, be patient, and practice bottle and breast feeding with Celia. What we can't do is help her not get tired, keep her taking long, deep breathes or force her to take more than she wants. So that is what we are doing and she is getting better at her part every day. Last week, she had a bit of a setback in that she started to take less and less of her bottles and have more and more major desats. The doctors stopped her feedings as a precaution and performed many tests on her to make sure she was not getting an infection or something more serious. She passed all her tests and the doctors determined she was just tired. They picked up her feedings a day later and slowly increased her back to full feeds. As of the last 2-3 days, she has taken all feedings through the bottle, has not had any major desats, and is kicking butt. Now we just need to keep her there ... and hope she is strong enough now to keep going so she can come home. What we keep hearing is that she needs to get stronger, grow bigger, and "time". We HATE the word "time". It's like slowly peeling a band aid off every time we hear it - but that is the solution for so much in the NICU.

Isabel
- Growth: 6 lbs, 2 ozs, 18.5 inches long

- Eating: this is where our major set back was. 2 weeks ago on a Thursday, Isa had a bloody stool. Prior to that, the amount of food she was willingly taking through the bottle had been decreasing so we were force feeding the rest via her feeding tube. Before the bloody stool, we tossed up the reduced bottle feedings to her getting tired and pooping out. However it turns out her belly was hurting her which is why she didn't want to eat. After blood work, cultures and x-rays, the doctors ended up treating her for NEC (Necrotizing Enterocolitis), which is an infection where bacteria begins to attack the intestinal wall. If the disease is not treated promptly, the intestinal wall can weaken and may die. Eventually, a hole can form through the bowel wall (a perforation), spilling its contents into the abdominal cavity. Bowel perforation is very serious requiring immediate surgery and has a high mortality rate. The scary part is that severe cases of this get really bad really fast and require surgery within a few hours. THANK GOD we did not get to that point, not even close to it. After a 7-day treatment of antibiotics and not eating (she was given IV fluids but no milk for the week, which is one of the hardest times I have had in a while. She had been eating through a bottle for almost 1.5 months at this point, and knows what it feels like to be hungry, eat, and get a full tummy. When she cried over this 7 day treatment because she was hungry, there was nothing we could to expect try to comfort her as much as possible. Needless to say on day 8 when we started the feedings again, I was SO relieved and she was too). She is back to full feeds, 56 mls, 22-calorie fortified milk and is doing well. She is not at 100% yet and still requires some to be fed through her tube, but she is getting better every day. Unlike Celia who tended (putting this is past tense due to our good string of days) to have major destas into the 50s, Isa is slow and steady and typically breathes very well during feeds.

Pulmonary: her latest ECHO showed that her PDA (which had re-opened after surgery) is once again closed and her pulmonary hypertension is also slightly better than the last ECHO. Good news all around.

In addition to the above, both girls are still on a chronic does of diuretics and Prevacid to help with their reflux.