Standing on the Wrong Rug

As many of you know my husband has Cystic Fibrosis (CF), over the last two years we have been beyond blessed to have been able to be a part a research study that is supposed to help correct the faulty CFTR gene. Although the new medication did not do as intended, it still has shown improvement in the lung function of CF patients with the DF508 gene.   The fact that Jake was even on the study was one of the most indescribable gifts from God. As a patient of the Dallas CF clinic our phone calls and emails about enrolling in the study two years ago, were to left unanswered. As the enrollment date came and went, it was evident that we were not going to be a part of the study.  I am not going to lie, I was distraught. I had inadvertently placed my faith in the study instead of God.  I though if we can just get him on these drugs to fix his gene than I can hold on to him, my husband, the father of my children for longer. We can delay the inevitable decline in his health, and I can continue to live in denial that our life is "normal."

But God had other plans.... the following week I received a phone call from a number that I did not know, for some strange reason I answered it. The lady identified herself as a research coordinator from the Fort Worth CF clinic. After a few seconds of silence and confusion she stated that she had received my number and that she heard my husband was looking to enroll in the drug study for the DF508 gene. Although I hated to, I reluctantly explained that Jake was not a patient of the Fort Worth Clinic, that we were patients of the Dallas clinic, and as of six months ago the fort worth clinic did not take our insurance, as we had tried to transfer over there earlier that year. She informed me that she double checked and they now  not only took our insurance but, they had one opening for the study. We would need to come by in the morning and if He met the inclusion criteria, he would in fact be able to participate in the study. There is no way to put it into words what that kind of grace feels like. Undeserved, impossible, and down for the count. But, God does the impossible, he changes our circumstances and revels his mercy and grace to us.  This is my parting of the Red Sea, after the 10 plagues. This is were my God showed up in a big way.  But just as the Israelite's did, I lost sight and started complaining in the wilderness.

The current study will finish in August, and my new prayer was to do be able to be a part of the next study for the DF508 gene. The new study was supposed to have better improvements in lung function and overall health. Over this weekend, Jake informed me that the enrollment already started, and because he was still on the current study he would not be able to enroll. I felt like someone had punched me in the stomach. Again, placing my hope in something other than God. Instantly, I felt gut wrenching sorrow for what this medication could have done for my husband. I explained this tearfully to Jake and that it felt like someone had pulled the rug out from under me response what this, "then your standing on the wrong rug."

How can seven simple words be so profound and change everything so quickly? Had I not learned two years ago? God does the impossible and His plan IS ALWAYS BETTER THAN OURS.  So I will remember where he has brought me from, I will rest on His rug and rest in his assurances.

Jeremiah 29:11

The TWIN how-to **work in progress**

Everyone always asks, "how do you do it?" Well, since there are two of them some ingenuity is needed. Some of these came from books I read (see below), some came from friends helpful recommendations, and some came from experiencing it. I am in no way a pro and a lot of these have come purely from trial and error! 

 I read many books. Some of them helpful, some of them not. The most helpful book that I read was written by moms of multiples and really offered a  lot of really great advice with a huge range of topics. I really recommend any pregnant mom of multiples to get one. Its called, "The Multiples Manual: Preparing and Caring for Twins or Triplets, 1,002 Tips for Expectant Mothers" by Lorenz.  Some of the tips below came from this book mixed with experience.

Hope this helps:

STROLLER/CAR SEAT:

• Start with looking at strollers!!! I know it seems backwards, but, carriers are made for all babies with the same safety standards, however, strollers are not all made for twins!!!  When you start looking at strollers you will find that even double strollers come in a vast array of shapes, sizes, settings, and cost! Play with them!! Open them, close them, lift them up and down and imagine trying to get it in your car. Double strollers are huge and costly so spend time trying them out.  Some come with 3 pieces that you take a part (I had no time for that, but some people like the versatility).
• SIDE-BY-SIDE/FRONT BACK DEBACKLE: I am here to tell you that there are huge advantages and disadvantages to both. My solution: GET BOTH!!  I use different strollers for different situations. I primary used front and back at the beginning as it was much easier to click the carriers into them and easier in and out of my vehicle. It was easier to get in and out of doctors offices as I did not knock everyone over in hallways.  However, my side by side is much more convenient in a park setting.
• I went with the Chicco double front and back stroller with the Key Fit 30 carriers. The car seat bases were SOOOO easy to install and switch between cars (literally only took me a total of 2 min to get both bases in and a matter of seconds to secure the carrier in the bases).  A great thing about the Key Fit 30 carriers is they are one of only a couple that can safely transport a lower birth weight baby.

FEEDING


BATHTIME FUN


SHOPPING

Where has the time gone????!!! Family update!

We are almost two!  I can not believe it. This year has seen lots of ups and downs so far and can not wait to see what the rest holds. Avery and Neely are everywhere. I mean. e.v.e.r.y.w.h.e.r.e! Places that I can not fathom, and doing things I am not sure how they know to do. What one cant accomplish by herself they have learned to work together and can basically achieve anything. Yay for teamwork, Nay for moms sanity!!!! The girls vocabulary has increased exponentially and I am not even sure if we can count all the words.  We still take one to two naps a day and are going to bed around 7:30pm  and getting up around 7am.  Eating is a constant battle, but I am told this is normal for their growth pattern now, still makes me crazy when they don't eat! But, they are gaining weight and still as rambunctious as ever so I guess the pedi is on to something with, "they will eat when they are hungry." I am pretty sure 95% of their diet is goldfish and I am told this is also "normal" They haven't turned orange yet, sooo....

We love exploring new things, safe or not! So safety proofing our house is a constant war. I am quite positive that there are no amount of safety proofing items to keep two determined twins from doing what they want.  For example, while taking the towels out of the drier, I came back to find four feet handing out of it on top of the remainder of the laundry still inside!! What!?! They have figured out which cabinet locks are weak and they attack. The two of them literally broke two of the  locks and now have a secret hideout!  Neely has figured out not only how to lock and unlock the dishwasher but to start it as well.   EEEKKKK!

In August we started a new mothers day out program that is 3 days a week and has extended hours! It works out perfectly for my clinical group on Mondays, and work Wednesdays and Fridays. I leaves me open to be with the girls Monday afternoons, Tuesdays and Thursdays!

Jake has had the opportunity to start in a new drug therapy for his type of CF! So far that is going well. The best part about the study is that when in closes in December/ January, he will be able to get the medication on a continuation study  that should reverse the faulty CFTR gene until it is released to the public! Here is a link to a similar drug for a different CFTR gene that has already been released! 
 http://www.cbsnews.com/8301-504763_162-57368992-10391704/cystic-fibrosis-drug-kalydeco-approved-by-fda-what-does-it-mean-for-patients/

He had to be hospitalized in September for a exacerbation "tune-up" which is becoming harder and harder for mommy with two toddlers. Jake had to have an unexpected surgery which complicated his stay. Although the surgery is "minor" for "normal" people is made things difficult for breathing. He came home on oxygen at night and is now starting to feel better.

The next chapter... into toddlerhood

Twelve to eighteen months

Wow, what a difference turning one year old makes!! The girls are starting to communicate with us better, even signing some words, while working on their own vocabulary. We have added mama, dada, doggie, and ball to our solitary "uh-oh."  We are also starting to climb on things, including, but not limited to our family dog, Harvey, couches, tables, stools etc.  We are really starting to be able to get out and about. We found a toddler play group at the local activities center, which WE love!!! It is so amazing seeing them get out and about and play with new objects. It is also amazing to see how their personalities are shaping up to be. Neely is a go getter, she loves to explore and doesn't really need moms help anymore. She is much bigger than she really is! But, every once in a while she can't find mama in the gym and gets a little scared!! Avery on the other hand is our dare devil, however, does not get more than a foot away from mama. She is so brave and doesn't really know her limitations, yet!

 

 

We are also blessed to have found a mothers day out program that the girls have started going to! They go two days a week and are doing really well! So far they have only been sick a couple of times, without missing school!!  Naptimes are going better. Neely, still does not like to sleep as much as Avery so she still naps in the spare room in a pack and play.  Girls are doing really well with trying and eating knew things! We love spaghetti and whole milk!!!!

 

 

 

 

 

 

There are still things that are hard to do with two, but we are finding all our obstacles easier and easier!!  





Crazy things people say.....

I am sure that anyone who has ever been pregnant or had a baby has been verbally accosted with peoples opinions, questions, and comments. I am NOT sure why people do this, or why they feel like they need to share or ask such personal questions. I wish that I could say that it was just complete strangers that felt they need to interject themselves in my life and our choices, but when it comes to co-workers, family and friends I wish that people would follow the simple, yet foundational, rule "if you don't have something nice to say don't say it (or ask it) at all." Here are the wonderful collection of peoples comments/questions and how I wish that I could respond.


"Oh, are they twins.....?"   ----- Yes, they are twins, hence the same clothing, same paci's, same earrings, twin stroller and the general overall look of sleep deprivation and haphazard look of my general appearance. Sometimes I just want to say nope, and walk away because when I answer "yes" we get the battery of the following questions.

"Oh, are they paternal?" ---- yes, they have a father... oh, you meant fraternal... yes they are that too.

"Are they natural?"--- nope, they are plastic. And I am still not really sure why this question is necessarily as if they mean less or not worth as much??!! Still not really sure.

Were you surprised when you found out they were twins??. YES!! I am pretty sure everyone is surprised when they find out they are pregnant, even when you "plan" to get pregnant there is something that takes your breath away when two lines appear.

And expanding on that last one... "Oh, you did fertility treatments, so you knew you were going to have twins...." Nope, I am not God, I can not foretell my future. I went with the recommendations of my team of fertility doctors, who were all in agreence that we would transfer two. And this question bothers me even more when it is projected that I should have known this was going to happen.

My favorite question is, "do they run in your family?" .. YES, I have twin cousins (which is not a lie!). Or, if they don't run in your family.. They do now!  Usually if they ask this questions the questions stop!!!!

I know there are some sassy responses that I could never really say, so the majority of the time I just smile and nod and try to not make eye contact. Its really hard when I am just trying to get in and out of somewhere. The deck is already stacked against me having two nuggets to get in and out of the car, keep happy during our shopping expeditions, but to add everyone stopping you with questions it does not help!

We are ONE!!!

I can not even begin to believe that our girls are one!! It is absolutely crazy.

 Last year our sweet girls arrived at 6:15pm and 6:16pm. It is unbelievable how much your life can change in the blink of an eye. In the past year we have had many ups and downs but have inevitably “survived.” Here is what I have learned the first year of raising twins:

1. Parenting=trial and error
2. You can do just about anything while holding two babies (and yes I do mean anything)
3. I can now understand how sleep deprivation can be used as a torture device
4. Found out just how “natural” breastfeeding really is
5. Personal hygiene and appearance take 1,298 on the priority list
6. Found out that you can reheat the same cup of coffee about 5 times before you have to throw it out (if you remember to take it out of the microwave after the 5th time)
7. A Break= going to the bathroom by yourself.
8. All those things I said I would never do, I did them, b/c there is a reason those people did them in the first place
9. Laundry, cooking, cleaning… what are they? 
10. Understand the true capacity of love and patience

 

 

Oh the Clamity!!!

ten to twelve months

We are sleeping from 8pm to 7am most days, every once and a while we will still wake up around 5 or 6am. They are eating oatmeal, rice, cheese, crackers, green beans, peas, vanilla wafers, mac and cheese, mum mums, and anything else we can break into small pieces. They are starting to hold their own sippy cups. Which makes more a much easier meal time for mommy.  Crawling everywhere in a second. I can not believe how fast they are and how fast they develop from day to day. They both love to talk, babble and laugh. Both girls are wearing 9m,  and size 2 diapers. Avery finally has 2 teeth and starting to stand without pulling up on anything. Neely loves following sister around and starting to get into trouble together.  Girls starting to "talk" to each other in cribs.  We will lay them down for naps or bedtime and hear them babbling. On the monitor they are both standing up in the cribs talking to each other across the room. So stinking funny!!!

Avery at her visit to cooks ER. Both girls got RSV, and Avery seemed to get the worst of it. Poor thing. Got some medication, treatments, and suctioning and we were on our way!

 

11 month
Girls are starting to go to bed closer to 8pm and waking up around 7am. They love to eat and so far have not been very picky, even though our meal cleaner-uper, Harvey, is! He is not a fan of the green beans.  They love playing with the food on their trays and are getting better and better at fine motor skills.  Doing great with sippy cups and starting to take then in between meals. Neely is so good at opening and closing doors, its her new favorite thing which again, gets them into trouble. They love getting into cabinets, pantry, closets, etc. There is not a day that goes by that we don't baby proof something else that they get into or find.  Avery is still wearing 9m and Neely, big girl, is up to 12 month. They are both still in size 2 diapers.Both girls are standing and "scaling" walls, cabinets, and couches. Neely still is not a good napper and doesn't want to miss anything, while Avery loves to sleep still!!!

 

 

12th month
 Starting to sleep 8pm to  some days to 8am!!! We are starting to introduce whole milk and Neely is loving it. After a couple of days she was not taking anymore formula. Avery, however, tends to have a little more of a sensitive stomach and we are starting to mix it.  WALKING!!! AWWW! Not ready for that! Neely was almost taking steps for about a week. Avery was still not ready to let go. But, 2 weeks before their birthday, we looked up and Avery took 6 whole steps!!! The following night Neely was walking also. Within 1 to 2 weeks they were walking 75% of the time.They are so wobbly! Neely walks like ET, hobbling side to side, while Avery is much faster than her balance and looks like she is flailing. Girls love to "help" mama with laundry. They love pulling out all the clothes and throwing them. So funny! Neely still wearing 12m and Avery still 9m. We are up to size 3 diapers. Neely has 6 teeth, while Avery still has two. They love to carry around  favorite toys and  clothes. On of their favorite games is pulling out all the wipes when mom forgets to shut the lid. They are constantly exploring everywhere and getting into everything.  Neely weighs 19lbs 11oz and Avery 17lbs 6oz.