Things to remember

It's been a crazy yet amazing 14 months and I wish it hadn't taken me this long to finally write to you...but... You've kept us a bit busy. You are growing up so fast and any day now you will be walking on your own. It's a bitter-sweet milestone in my eyes. When your brother was learning to walk someone told me that as soon as he started walking on his own that the time would really start to fly by, and that he would go from being my baby (who needs me for everything) to an independent toddler, learning how to do things on his own. It was true. Although I love seeing you both grow up and see your personalities emerge, I will always think fondly (and miss) the short time I had to hold you in my arms and rock you to sleep.

While I still have you as my baby I want to pass on some feelings and advice (before I forget them).

1. You, my dear Claire, are the epitome of the beauty in the human spirit. Your strong will and love of life has pushed you through times and trials that many wouldn't have made it through. You are a constant reminder of what it means to be resilient  and I will forever look up to you for that.

2.  You are stubborn. I've known that from the beginning.  This can be a great asset, but don't let it be a roadblock in your life. Trust others.

3. Your father and I have fought hard for you since before day1. We always will. If you allow us, we will be your biggest fans and constant supporters. No matter what.

4. You will make mistakes. We all do. But in this department, less is more so learn from them and even if it seems like a huge, unforgivable mistake- refer back to #3.

5. I hope you learn to see, feel, and experience the beauty in real food. Prepared with love. For you.

6. Go with your gut, it's rarely wrong.

7. Never judge people. Period. You never know what's going on in their lives or what they've been through.

8. Becoming a mother changed me. Becoming your mother changed me even more. I truly hope that one day you get to experience the indescribable love you feel for your child. And when you become a mom and think, "wow, my mom did all this for me?"... Well... Your welcome.

9. There is nothing quite like getting you hands dirty and digging in the soil. Regardless of what field you choose and how technological the world get, always make time for getting back to nature.

10. Keep an open mind.  Despite what our society portrays, we don't know everything. There are forces greater than us and what you believe is up to you, but respect the beliefs of others, whatever they may be.

11. People will always remember how you made them feel. Never forget that.

12. Don't be afraid to fail.

13. Rules are meant to be broken. Except mine- don't eff with mine.

14. Spread the love. The kindness, compassion, and expertise of countless people have gotten all of us to where we are today. Make a difference to other people. You may never see the impact you have on them, but they will.

And above all, know that 'the greatest thing you'll ever learn is just to love, and be loved in return'
      (Bonus if you can name the movie)

Birthdays and anniversaries

Once again the busyness doesn't end. We celebrated Owen's 3rd birthday in March, Claire's 1st birthday in April, and mine in May. June 9th marked the year anniversary of bringing Claire home from the NICU and June 12th was Jake and my 9th anniversary. Phew.

Now to enjoy the summer.

Baby steps

To pretty much anyone but us this picture looks... Well, average (cute, but average). To us this picture signifies serious progress. For a baby with a massive oral aversion getting anything into her mouth is a major accomplishment... But then you add to it the presence of some food on her finger... And we have a huge baby step in the right direction. Yay Claire!

The days go by

The days seem to go something like this nowadays....

I reluctantly drag myself out of bed and pump before jake leaves for work... While jake gets Claire her first feed of the day (which she may or may not be awake for). Owen is usually up at this point and eats some breakfast while I'm pumping, eh- what the hell, it's natural right?

From here on out, anything can happen. Owens birthday was last Friday. After I had finished Claire's second Gtube feeding she had fallen asleep in her bouncer so I figured this would be a good time to do some birthday crafts with Owen (and by crafts I mean cutting balloons out of colored paper...). We gather the scissors and paper and within about 3 seconds he falls off the chair he is standing on at the bar (yes, mom of the year award is in the works) and scrapes his hand...Owen starts crying, Claire wakes up and starts crying...I'm holding two crying babies and attempt to get a bandaid for Owens  hand and as I start putting the bandaid on (while still holding a crying Claire) she projectile vomits all over all of us (we usually call it spitting up but in all seriousness ummm...it vomit). Sweet. Now were all crying and wet. Somehow we all got clean and dry and the day went on. Happy birthday buddy.

Today on the other hand started out like this... I reluctantly drug myself out of bed, told jake I wasn't pumping because I was done (yes...done) and then we ate breakfast over the course of a few hours. Claire had a massive up the back blowout so I went to change her. In an effort to let some air drying happen I put a blanket down on the bed and let her roll around naked until she peed. Blanket changed, Claire cleaned, and back on the bed. Now comes the poop. More poop. All over her. Ok, time for a bath. Bath. New clothes, blankets, and changing table make over. Next feeding. Spit up. Poop. And we start all over again. And it's 10 am.

Luckily I have really cute kids... And they're good too...

Time heals all.

It was a week ago, (last Friday evening) that we finally got Claire discharged from the hospital. What was initially supposed to be an overnight stay ended up a four and a half day admission. I think it's safe to say that second thoughts were running wild through my head and worst case scenarios had become regular occupancies in my mind. Ever so thankfully I write this as both kiddos nap peacefully...  at home.

We had to check in at the same day surgery clinic at 6:30 a.m. On Tuesday for Claire's G-tube placement. When we arrived, the place was packed. Monday had been a holiday so there were that many more scheduled cases... Yay. After getting checked in Claire was given atropine since her anesthesiologist routinely gives this drug to 'little babies' like Claire. Her anesthesiologist then askes us how bad Claire's reflux was and whether we thought she would be fine to get the IV after under general anesthesia... Since she could get aspiration pneumonia, a potentially life threatening illness if she had reflux before the IV and her airway secured.... Double yay. And here comes the first rush of second thoughts. Well, shit. What kind of potential life threatening situations are we putting Claire in for this essentially elective procedure???

After deciding that her reflux should be ok to get the IV after being asleep, and after Claire completely filled her diaper, we walked down the hall to the operating room and handed her off to the anesthesiologist. I don't know how many times a day parents hand their baby off to anesthesiologist a in that very hallway, through that very set of double doors... And wonder if they'll ever see their little one again. I know, I know it sounds super dramatic, but there are very real risks with any surgery and anytime someone goes under general anesthesia. Especially when it's your baby and especially when you've seen these 'minute risks' come to fruition in your own OR.

The tears began to flow as jake and I walked to the waiting room but after getting a muffin and a chai only a matter of minutes passed before her doctor came in to tell us the procedure was over and Claire was doing fine. About fifteen to twenty minutes later I was able to be with her in post-op. Overall she seemed to be doing good, you could tell she was in some pain but she was her regular feisty self. From there she was moved up to the infant med/surg unit and she stayed pretty sleepy most of the afternoon with pain medicine. They would keep her NPO (nothing by mouth) for 24 hours, then begin using the G tube for feeds. Jake and I went to a G tube class that night in the hospital to learn emergency and routine care of the tube while Deborah stayed with miss Claire in her room.

Up until Tuesday evening pain control didn't seem like much of an issue but then... Then It was. Every few hours the pain meds would wear off and she would get just enough more to keep her comfortable for awhile longer. We were supposed to be 'rounded on' by the surgery team early Wednesday morning so they could check Claire out and give the orders to start her feeds. Ten 'o clock came. Noon came, then 2 pm...we had anticipated going home by now and we hadn't even started her feeds yet...3 pm came...her nurse finally got an order to start her first feed of 25 mL. The plan was to do two of 25, 50, 75, and 100 mL (100 mL being a full feed for her). We did a 3:00 feed of 25 mL and finally saw a surgery resident around 4:30 that afternoon. Unfortunately she didn't check her incisions because it wasn't until almost 7:30 when jake mentioned to the nurse that Claire's bandage seemed budging that it was seen that her incision had opened and had herniated tissue. A surgical nurse practitioner came by around 9 pm, after Jake had already left for the night, and said that she would need to be taken back to the OR in the morning to have it fixed. This also meant she would have to go under general anesthesia again. And her feeds would have to stop. We were going to be here awhile.
Damn it. Cue in the next set of second thoughts. And worst case scenarios. Damn it.

Thursday morning the OR tech came to get Claire, I was able to carry her down to the front desk of the OR where I met the surgeon and anesthesiologist. Jake hadn't made it up yet so the Drs assured me that everything would be fine and they would fix her up in no time. By the

time I made it to the waiting room, in tears once more, Jake had gotten there. So we waited, yet again, for our daughter to come out of surgery and anesthesia.

The rest of ther hospital course was pretty un eventful. It was just a matter of increasing her feeds and ensuring that she could tolerate them. By Friday afternoon she was up to her full feed and doing okay... And we were all SO ready to go home (and mr Owen was SO ready to have us all home).

The past week has been a learning curve for us. We are getting back into our rhythm of what has become our normal and Claire is healing well. Other than not feeling the need to sleep through the night she is basically back to her old self. And not having to deal with (or worry about) the NG tube is nice. I'm hoping that by this time next week things will be even better and that we'll be working on some oral intake for little missy...

All in favor of a feeding tube...

I'm writing this post to you, miss Claire, because I know that one day you are going to ask me why. Why did we decide to give you a surgically placed tube to eat. Why couldn't we just feed you like a 'normal' baby.  Well, you are not normal, you never have been. You are amazing...and a constant inspiration to me. You may wonder if you'll ever be able to wear a bikini without the embarrassment of questions of your scar. You may criticize us for the choice we made but I truly hope after reading this you'll understand our decision and look at your scar as a badge of courage and survival.

The roots of this decision stem back from before you were even born. After being observed on ultrasound over a dozen times in utero we still didn't know if you would survive after birth. We'd been told by numerous doctors that you might not make it, but despite the odds you fought... And not only survived, but you thrived! 

Because of the concerns with your stomach and bowels you received all of your nutrients by IV until you were 5 days old. At that point you had a feeding tube ( NG) placed and you began receiving milk in tiny amounts (15 ml). From then on (for the first 6 weeks, the entire time you were in the NICU) you received a majority of your meals through the feeding tube. For reasons unknown to us it took you awhile to get to the point where you could take all of your feedings orally. There were many theories; your small size, the holes in your heart, an oral aversion... But in the end we never really figured out why the feeding piece was so tough. 

By your 48th day of life the NG tube was out and you were taking all of your feeds by mouth- and you were home. Every single day was a balancing act, but overall the first few months home went fairly smooth. You ate fairly well and contined to grow ok, and on your own curve. By the beginning of fall feeding time had become more and more of a struggle... You taking less and less at a feeding and us trying more and more to get you to eat. Where before you would take atleast some of a bottle from others, now you would only take a bottle from mom and dad, and even that was a struggle. We had been able to lower the calories we added to your milk in the summer, but now with you drinking less your pediatrician told us to start adding the extra calories again. We continued to feed you every 3 hours with smaller volumes because you simply couldn't tolerate big volumes of milk. The questions arose again as to why feeding was becoming such an issue- was it cardiac (your body was working so hard to make up for the holes in your heart)? Was it GERD? Another oral aversion? We didn't know. We had no-one to turn to for answers at the time, and all we knew is that you weren't eating and getting the nutrients or calories you needed. And it scared the shit out of us.

You will never truly understand this until you are a mother, but the most natural and maternal thing there is... Is to feed your baby. The most basic maternal instinct is to nourish your little one so she will thrive. And I now truly feel that one of the most difficult feelings as a mom is knowing that no matter how hard you try, you aren't. I was still trying to breastfeed as well as bottle feed you, and you- being the unpredictable little girl that you are- would never flat out refuse breastfeeding... So we kept trying and I would pump the rest of the time. Still, things kept getting worse. You would cry, arch your back, and most times flat out refuse to drink. We would all come to dread feeding time, praying that you would take some milk, any milk... and keep it down. We would keep track of how much milk you took at each feeding and by the end of the day you weren't even hitting your minimum intake. You would vomit frequently and sometimes lose an entire feed. We were lost. Your pediatrician was out of the country and we didn't know who to turn to. We were frustrated. No matter what we tried, you just wouldn't drink.  We we're desperate to get you nutrition. We knew what the next step had to be. 

I've said it before and no doubt I'll say it many times again, things happen for a reason. One day at work, (while at a very low point and damn near the end of my rope), a pediatric GI fellow came in as a patient. As soon as I heard this I pulled her aside and told her what was going on. She was very concerned and pulled some strings to get us into the clinic within the week. We tried a dairy free formula to rule out a lactose allergy and a medication to increase appetite, both to no avail. It was time to go back to the feeding tube.

On November 25th, your grandma's birthday, you were admitted for observation at PCMC so that your dad and I could learn the in's and out's of your NG feeding tube. We both had to put the tube in you before we could leave. Our hopes were that as your nutritional status went back to normal, and as you gained weight, that you would begin eating on your own and we could get rid of this damn tube....  Well... you went from eating some by mouth to essentially nothing once that tube was back. When we saw your cardiologist in December he thought that your PDA could be part of the feeding issues, (and since the PDA hadn't closed on it's own at this point is wasn't going to). So on December 19th you had a heart cath in which Dr Grey put a metal coil in the 'hole' to close off the PDA. So now that your heart 'stuff' was taken care of we thought that maybe you'd start eating better orally...

You are in feeding therapy currently, as well as physical therapy, and a patient in the neonatal follow up and follow-up-nutrition (FUN!) program at PCMC. You are an amazing fighter and I have no doubt that you will be eating 100% orally on your own. Just not yet. I think we all have to be patient and not rush you- and you do an amazing job at letting us know where your boundaries are...we just have to follow them. NG tubes are meant for short term use and are known to increase oral aversion (you have a tube stuck to your face that goes through your nose and down your throat 24/7, then when it comes out we have to put it back in) and it increases reflux...something that you have pretty bad. With those two things combined, and the fact that without a tube you just aren't making it nutritionally, we have come to the conclusion (with much research, advice, and soul searching) that the g-tube is the way we have to go in order to get you to be a true lover of food one day.

I have done pretty extensive research on tube weaning and intensive hunger based tube weaning programs (none of which are in Utah). We are going into this surgery with a plan to get you tube free as soon as possible. But we don't really see any other way around it. So...this is not a decision we have come to quickly or lightly. Know that it has been an extremely hard decision for us and we feel that we have tried pretty much every other option that we (and others) can think of. We also know that you are a fighter and that everything that life has thrown at you, you've beat...and you'll beat this too. We'll beat it together.

Growing up

There is something so beautiful and poetic about watching your child playing from afar. Maybe it's that everything you see them do they are doing on their own with no input or influence from you... Maybe it's that you see the light in their eyes of discovery and imagination... Or maybe it's that we literally see them growing up in front of our eyes, no longer an innocent baby who needs your constant support but a growing individual who makes their own decisions. There is a definite bitter sweet that fills my heart as I see this little person grow into his own, with his own personality and capabilities that no longer need me like before.

Despite what seems to be a constant state of sleep deprivation I feel like I've come to truly enjoy the little moments when I'm still needed. Whether it's holding a little hand going down the stairs, tucking him in (yet again), or carrying him around, I can't help but feel the time fly by us. It's so easy to get caught up in daily chores that we forget about these little moments that matter most... And that I'll miss the most as he grows up too fast.

Germ warfare

Long gone are the times when I can wallow in my own self misery when sick. Welcome to motherhood. Motherhood with 2 children meaning quarantines, splitting up the kids so that the other has a chance of staying well, and hunkering down until the damned virus has vacated (hopefully before everyone goes crazy from the plague procedure). There is a true art to balancing the sanity of all... mom because she's caring for the infected, worrying about each new symptom, hoping that she's containing the spread (and not becoming a new vessel for transmission), and sadness for not being able to kiss or hold the babe (for fear of being contagious before being symptomatic). While mom making hourly runs in and out of quarantine for juice, Popsicles, and medicine, dad is feeding the babe...yet again, hoping that she'll take anything by mouth but inevitably ends up tubing the majority of the meal. Day in and day out while hoping that the illness stays upstairs he keeps on the schedule, crossing fingers at each feed that this one will stay down, that all the effort won't be for nothing and that the nutrition will stay down. In the meantime, flu-boy doesn't understand why he's sick, why he's stuck upstairs and can't play with sister, and when this will all end. And our poor little one is frustrated and upset when she sees mom go back and forth throughout the day yet never getting close enough to touch, kiss, or hold her.....

Oh the joys of the flu.