Need Advice…

I need some advice and you all are the most sage and impartial audience I could ask for.

Rowan is involved with Early Intervention services with our state’s program. Due to her clefts, Agenesis of the Corpus Callosum, low birth weight, etc., she qualifies for services until the age of 3. These services right now include weekly physical therapy and twice monthly occupational therapy. The therapists visit my home or my mother in law’s house to work with Rowan.

These services are state funded, so they come with a nominal fee. We pay five dollars per month for these services. I am admitting fault right now that I often forget to send in the payments every month. I usually pay every other month $10 or $15 because I think it is ridiculous to spend nearly 50 cents on a stamp for a five dollar payment. As such, I forgot to send the payment before Christmas and it was late. Last Wednesday I got a call from the case manager for these services stating that if my payment was not received by Friday, they would suspend Rowan’s services. Fair enough, I’m the idiot who forgot to mail the payment. I dropped it in the mail that day, it was set to arrive on Friday. Friday morning the case manager called me back and said that they hadn’t received payment and she was suspending services. I asked why, since the business day wasn’t over. She told me it was already done. I didn’t argue, what’s done is done.  I called the Central Finance office and they said that payments would post by 2pm. I called the CM back and asked her to check after 2pm and restore services. I was in contact with the CM that evening and she never said that they payment was received. I expressed my frustration. First thing Monday morning, I called Central Finance who confirmed that my payment was received on Friday. When I contacted the CM, she indicated that everything had been restored automatically. Great, everything is OK.

Rowan has a standing appointment on Tuesdays with her PT at 1pm. Yesterday on my lunch break, I had a text from the PT saying that she had scheduled someone else in Rowan’s spot because she had been notified that services were suspended. PT waited until the day of the therapy appointment to say anything. She also said that she received an email at 8:30 am on Tuesday that services were restored. I texted her back and said that I did not appreciate the short notice, especially when situation was resolved on Friday. The PT put it back on the CM that she was not notified properly. This was especially irritating to me since I have not had a good relationship with the PT lately, but that’s a story for another day.

Long story short, I forgot to pay my bill. Got the payment for the services to them by the date they requested, they discontinued my daughter’s services anyway. I contacted them to make sure that everything was set back up. I was assured that everything was ok. Rowan did not get therapy because of what seems to be a communication error. I’m beyond frustrated. I know that I messed up because I didn’t send the payment on time, but I don’t feel that the therapist should have filled her time slot.

Am I overreacting? Or do I have a real reason to be irritated? I feel like someone (other than me, I take responsibility for my action) dropped the ball and there should not have been any reason for interruption to Rowan’s therapy schedule.

Some end of year updates…

I owe you guys so much more than a few lines. But that’s all I’ve got the time for today.

  • The girls are 1! They turned 1 on Thanksgiving Day. We had their party on the Saturday after Thanksgiving. It went well. I’m incredibly thankful for all of the help and support that we had to make the party great.
  • Rowan has had two surgeries for her cleft lip/palate now. The first was a lip adhesion, tip rhinoplasty (nose job), intervelar veloplasty (soft palate repair) at the end of July. Unfortunately, the placement of the breathing tube during her suture removal the following week disrupted the soft palate repair. I was one irate Mama. There was nothing that could be done and so she will have it re-repaired in the future  during another planned surgery. The second surgery was a cheiloplasty (full lip repair). It was enormously successful and she looks absolutely fabulous. She has always, always been beautiful, but she definitely has a more “typical” appearance now.
  • Alina is my sweet, happy, ornery, busy, busy, busy baby. Her Abuelita (my MIL) calls her “Terremoto” because she leaves a path of destruction wherever she goes. It’s pretty fitting. She has hit all of her milestones on time and easily. She prefers to feed herself table food and is taking milk, rather than formula. She says “Da Da” and means it. She says it every time she sees Farmer. She makes other sounds, including “ma ma”, but she only says that when I am doing something she doesn’t want me to do… like keeping her still to change her diaper. Alina also took her first steps the day after her birthday. She still doesn’t walk a lot. She prefers to crawl since it is still faster, but I don’t expect that to last long. She also has seven teeth. Number eight is coming in. She got 4 in one weekend… the kid’s an over-achiever!
  • Rowan is behind on nearly every milestone and is still dealing with seizures. She has physical and occupational therapy weekly and still sees many specialists. She also takes medication for hypothyroidism and two seizure medications (phenobarbital & Keppra). She also has a helmet for bracycephaly (the entire back of her head was completely flat). This is to help round out her head to a more typical and healthy shape. She wears it 23ish hours per day. We’re hoping the helmet therapy will be complete in early 2017. She has begun to be interested in her toys and can nearly sit up unassisted. These things are huge achievements for her!
  • Farmer and I now work at the same place on different shifts. We only have Sundays off together. So far it is working. I keep joking that “absence makes the heart grow fonder” and it seems to be true. We really try to make our one day off together special.
  • And the craziest update of all… I’ve been thinking about trying for baby #3. It’s completely nuts and scary. Farmer has been all for it basically since the girls were born, but up until just a few weeks ago I was completely against it. There was no way in hell I was having another kid. I’m not sure what has changed other than the girls turned one. I think surviving the first year has made me a bit more confident. Regardless of the cause of the change, I truly do feel like a fog of some sort has lifted and I’m open to all sorts of new possibilities, even a new baby.

I will leave you with pictures.

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Bebop (Alina) and Rocksteady (Rowan) on their first Halloween.

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Alina at birth and now.

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Rowan at birth and now.

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I’m one, me too.

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Rowan after her second surgery suture removal.

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Alina and her pretty blue eyes.

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Rowan’s first smile after her second surgery. Who doesn’t smile at the grocery store? 😉

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Santa! 2016

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Alina with her favorite birthday toy. Terrible picture, but the girl never sits still!

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Rowan pre-first surgery.

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Rowan post-op first surgery.

Time flies, friends… Hang on to your hats

6 months. What the what? Yup, that’s six months since my rotten little critters were yanked from my gut. I’m writing this on my phone and getting all teary-eyed because they are just growing so fast! At this very moment the girls are playing on the floor. Rowan is squealing (a newly acquired skill) and kicking her arms and legs. Alina is playing with her blanket and practicing rolling from back to front (which she just learned today!).

Here’s a quick run down of what we’re doing now.
Monday through Wednesday the girls are with their Abuela while I am at work. I usually take them there either still sleeping or barely awake as I have to leave for work at 6am. I arrive back at MIL’s house to get them around 6pm. On Thursdays, Rowan has at least one doctor appointment. I work 10 hour shifts (M-W, F) to accommodate this. Usually that appointment is to adjust her NAM (nasal alveolar molding device), which is a retainer-like piece of acrylic that is used to mold her cleft. (Find out more about the NAM here: http://www.stlouischildrens.org/our-services/cleft-palate-and-craniofacial-institute/nasoalveolar-molding-nam). Other appointments might be for her surgeon, neurologist, endocrinologist, geneticist, ophthalmologist, ortheir pediatrician. I try to schedule all appointments for Thursday to avoid taking time off of work. I have a limited amount after maternity leave and will need quite a bit for Rowan’s surgeries and any illnesses they have. On Fridays, the girls get to stay home. My mom (aka Mammy) offered to come up every week to stay with the girls on Fridays until Rowan’s first surgery. Mammy has to drive 3+ hours one way to do this. After surgery… I have no idea what we will do.
Every day we do the usuals: baths, feedings (formula and solids), naps, play time. Rowan also has to take two different medications. Phenobarbital helps to control her seizures and levothyroxine to supplement her underactive thyroid.

It’s a crazy life, but it’s mine. I love these girls more than anything! I have daily concerns for their wellbeing and development that I consider “normal” mom worry. Then I have all of these other worries about Rowan. “Is she going to have seizures today?” “Is she eating enough and gaining enough weight?” “What is life going to be like for her, is she going to have intelligence deficiencies?” “Is she too far behind?” The list goes on. I feel as though I teeter back and forth from OK to the edge of insanity… but I don’t think it is abnormal. Just life.

Here’s how we are doing developmentally.
Alina: Rolls front to back and back to front. Loves solid foods. Plays with toys. Reaches for items. Stares at other people’s food. Very aware of her surroundings. Loves to be held and played with. Squeals and coos. Sits assisted.
Rowan: Loves tummy times. Holds head up and looks around. Loves cereal. Starting to play with toys and “snuggle” soft toys. Kicks both legs. Has discovered her hands and likes to chew on them. Sits assisted. Squeals and “ahs”. Loves to be talked to and smiles at “her” ceiling fan constantly.

These cats are the coolest… let me throw some pictures at you!

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These two will be on the move soon… I’m in such big trouble! 🙂

One year

A year ago I got the faintest hint of a pink line on a cheapo pregnancy test strip. I was pretty sure that my eyes were playing tricks on me. I showed it to Farmer and he acted like he didn’t see it. (He later told me he did, he just didn’t want me to get my hopes up.)

Fast forward a year and after a stressful pregnancy, a surprise delivery, and many challenges since then, I now have two adorable, awesome 5 month old girls. Yup, five months old already. It really doesn’t seem possible and I still can’t believe they are mine.

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Rowan

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Alina

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"May the odds be ever in your favor..."

St. Patrick’s Day Anniversary

Naturally, I am getting to this post late. Thursday was St. Patrick’s Day. On March 17th, 2015 I learned I would be doing my first IUI on the next cycle. Luck of the Irish, indeed. I remember feeling hopeful and incredibly relieved. The stress of being stuck in limbo-land and not moving forward was strangling me. St. Patrick’s Day is now a day of luck and hope for me, an anniversary of sorts.

This is how I celebrated this year.

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They weren’t feeling particularly photogenic, but I basically dressed the girls up in as much green, girly crap as I could find. Who am I kidding? I loved every second of it. It was fun. Rowan had her weekly NAM adjustment and all of the girls that work at the orthodontist’s office swooned. I love when other people fuss over my babies because, dammit, I did get it right with them.

Everything else that is going on in life gets bullet points.

• Rowan has been seizure free since we left the hospital, almost 3 weeks now. She’s getting better with taking her medication (phenobarbital). We tried a few different ways, none of which are better or worse than the others. She still hates it and gets kind of choked up,  but doesn’t spit it out or throw it up. So I call that a win.

•Rowan’s orthodontist said that it would be at least 2 more months before her first surgery. That will be a lip repair, ear tubes, and I think the soft palate, but I am not sure.

• Alina rolled over for the first time today! I knew it would be coming soon, but she did it. I feel terrible because I missed the first time because Rowan was crying and I was tending to her, but I got Alina’s second roll on video. So proud of my chunky monkey!

• When I went back to work last month, I switched to 10hr shifts. That way I am not constantly using leave to take Rowan to weekly doctor appointments. My sick and annual leave bank was seriously depleted because I took 12 weeks off after the girls were born. I also need to save all remaining leave time for Rowan’s surgeries. The 10 hour shift thing is great in theory. Reality is, it sucks hairy balls. It is necessary and I will do it because it is best for my family, but getting a nightly routine down has been a beast. The girls are fine, they go with the flow, but I constantly feel like there are not enough hours in the day. I don’t like feeling rushed and feeling like I don’t have enough time with them at night.

• Both girls are fantastic. They will be 4 months old on Thursday. I can’t believe how time has flown. Both girls sleep through the night, which is amazeballs. I hope you all don’t hate me for that.

I still have a thousand things I want to write about. None of which I feel I have time for, hopefully I can get better at managing my time and laziness.

A Scary Week

There’s what seems like a thousand posts that I want to write. This isn’t one of them.

Last weekend started out great. My mom had been visiting since Thursday because she watches the girls for me on Fridays. She and Farmer went to a small animal auction and the girls and I joined them later. It was a great first trip to “the sale” for the twins. The weather was fairly nice and I had just gotten a new carrier that was working beautifully. I also got to try out the stroller for the first time.
Sunday, my mom left pretty early. No big deal. Farmer went to the farm to do some work since the weather was still nice. Around 9:30, I started feeding the girls. Alina was fine and ate like a piggy. Next up, Rowan. It always takes a little longer for her to eat. All of a sudden, she turned blue. I thought she was choking, so I flipped her over and started thumping her back. When I flipped her right side up, her color was back. I thought it was weird, but just assumed she had choked and would be fine. Unfortunately, it wouldn’t be the first time that she choked, so I didn’t see it as a big deal. I continued feeding her. Just a few minutes later, it happened again. I repeated what I had done before and again, her color returned. I stopped her feeding. I called Farmer to come home. I needed him to see this to make sure I wasn’t crazy. Rowan seemed fine, maybe a little out of it… but who wouldn’t be after choking? After Farmer got home, she did it again with no provocation. That was it, we were headed to the E.R. Before we could make it out of the house, she had 3 more “spells”.
The children’s hospital is about an hour away, but stopping at the smaller local hospital was not an option. (They would freak if I brought in a preemie with a cleft lip/palate that was turning blue.) She did not have any spells on the way.
We made it to the E.R. and they saw her right away. The doctor admitted her for observation. Still no more issues. All of the staff was friendly, helpful, and explained things well. This was a relief since it was the first time that we had used that hospital (it is also where she will have her cleft repairs done, so I figured we had better get used to them.)
The first couple of hours were pretty uneventful. They did start an iv and took blood from her. Around 4:30, Rowan was doing tummy time in the hospital bed and she turned sort of red, but snapped out of it so I couldn’t decide if it was the same thing that had happened before. At about 6:30, weird things started happening. She would stiffen, lift her legs to a 45 degree angle and change colors and her oxygen saturation would decrease rapidly (desat). I called a nurse in every time it happened, but they never made it in time to see it. The events were only lasting about 15-30 seconds. Around 7pm during shift change, the nurses were in the room doing report. They got to see it happen. Rowan desatted again, rapidly. She needed oxygen. They suspected she was having seizures. She was moved to PICU.  Seizures continued on and off for a couple of hours. They did an EEG which confirmed seizure activity on the left side of her brain. She was given phenobarbital for the seizures and she was able to rest for a few hours. She had 5-6 more seizures overnight and into the next morning. She was given another large dose of phenobarbital. They tried to do an MRI on Monday afternoon, but she was too wiggly. Continued with maintenance doses of pheno, seizures stayed away. Tuesday afternoon she wasn’t allowed to eat or take a nap for about 4.5 hours. Then I was to feed her so that she would, hopefully, sleep through the MRI so they wouldn’t have to sedate her. It worked. I finally got her to sleep in the MRI room and she slept until we pulled her out of the machine… success. The MRI did not show any abnormalities that we didn’t already know about. So that was a bit of a relief. She was also moved out of intensive care.
On Wednesday, she had been seizure free for 48 hours so she was released. I was told that this will happen again and she will have to have her medication adjusted often.

A shitty, scary situation. She is home now and has been seizure free for 5 days. She is also getting used to the phenobarbital, so she’s not quite as sleepy all the time. I am so glad that I followed my instincts and took her to the hospital. I am also thankful that the staff there made a really scary situation tolerable.

On a fun note, I was able to finally get professional pictures done of the girls last night. I can’t wait to see them and share them with you all! And Rowan had her follow up appointment with her pediatrician yesterday. She finally weighs 8lbs!

6 months and 3 months.

I looked back. My last post was nearly six months ago. Wow. So much as changed. I think to catch up, bullet points will have to do.

•Pregnancy weeks 22-30. A series of MFM appointments to determine the extent of Baby A’s birth defects. Cleft lip and palate had been confirmed at 21 wk ultrasound. Blood test determined no major chromosomal abnormalities. Fetal echocardiogram = no heart defects. Baby A refused to show much of her face. Mom and Dad struggled to come to terms with birth defects. First signs of growth restriction for Baby A. Baby B growing perfectly (and big!). Start discussing names. No decisions made.

•Pregnancy Week 30. Met with surgical team to determine if they would be “our” team. Loved the nurse, surgeon good, too. Decided to go with that team because of good first impressions, good reputation, and they are local (about 1 hr away). Other options would be 3+ hours away. Cleft team told us about the “typical” plan for baby after birth. A NAM device would be used. Surgeries at 4-7 months, and another at 12-18 months. And more after that… Spend time digesting. Everything still going pretty well otherwise. Mom feels great except for anxiety over Baby A’s defects. The unknown is scary. Weekly ultrasounds, NSTs, and doctor appointments begin. Still no headway on names.

•Pregnancy Week 32. Seen by MFM again due to weight discordance between twins. Given steroid shots for babies’ lungs. Baby A estimated at a pound lighter than her sister. Steroid shots make me feel terrible… blood pressure creeps up… Still no names.

•Pregnancy Week 33. 33+5 feeling funky. Keep checking BP. It is not in a scary range, but high for me. Still feel like crap. Starting to feel really wet down under. Assume it is mucous plug since no contractions. Farmer and I finally decide on names. Baby A = Rowan Nicole. Baby B = Alina (Ah-lee-nuh) Keelin. Yay! Super excited about that. While laying in bed talking about them I make a joke about them coming early now that they have names.

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33 weeks

•33+6. Regular OB appointment and ultrasound. U/S tech (super awesome, by the way) notices Rowan was not acting normally. She had very little movement and next to no amniotic fluid. Her heart rate was OK, but everything else was concerning. Alina looked perfect on U/S. I was taken to Labor and Delivery. Soon the verdict was in… I would be having babies that night. C-Section scheduled for 8pm, 11/24/2015. Rowan Nicole was born at 8:31pm weighing 3lbs 15oz, 17in long. Alina Keelin came into the world at 8:33pm weighing in at 4lbs 10oz, 17 3/4in long. Their cries were the most beautiful sounds.

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Rowan

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Alina

•NICU. Time in NICU sucked. The day after the C-section sucked for me. I couldn’t go see the girls when I wanted to. I was stuck in bed. Both girls were strong. They never needed to be intubated, the steroids had done their job. They were on a CPAP for about 2 days. Happy Thanksgiving to us, they were off the CPAP and just on regular oxygen. Soon they were moved to regular air in their isolettes. Alina was hospitalized for about 2.5 weeks. Rowan was in the hospital for about 3.5 weeks. We were able to come home the Friday before Christmas.

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My first time holding both girls at the same time.

•Home. It was fantastic to be home. The girls were perfect and beautiful and wonderful.

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One month old.

•Now. They girls are 3 months old today. Time has flown. I have gone back to work.

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Rowan's pretty cleft smile.

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My sweet Alina.

These are some serious Cliff’s Notes. I want to write posts about the following: feeding Rowan, NICU frustration, balancing time with each twin, cleft lip and palate, corpus callosum (and other birth defects), mommy guilt, going back to work, lack of breastfeeding, and being a rock star.

I have done some serious stalking of you all trying to catch up… I will get caught up. Eventually. ❤