One-on-One Dates

Jesse and I managed to squeeze in three "dates" this week to give the kids and one another some individual attention.

Tuesday: Movie and Park

Jesse took Jackson to the $1 movie to see Free Birds. Jackson proudly paid for his movie and popcorn from his very full piggy bank. Jackson lost interest in the movie after he took a restroom break midway through. He then "played" games at the arcade before stopping by the park for a few minutes of outdoor play.

Thursday: Mexican Fiesta

Jesse's mom came over so the boys (Jackson and his cousin) could play together. While the babies napped, Jesse and I escaped to our favorite Mexican restaurant. (In case you're wondering, we dismissed the chips and salsa but consumed a lot of carbs through beans, rice, and corn shell.) It's been nearly two months since our last date, so it was nice to get out of the house sans kids. After some serious job related stress, we are back to a more relaxed, playful relationship.

Friday aka "Dress Like a Cow and Eat Free at Chick-Fil-A" day

Maddie and I had an impromptu lunch date. I saw a few pictures of Facebook friends dressed like cows, and immediately recalled an adorable cow print cloth diaper passed down from my sister. Maddie was the only one small enough to wear it, so she accompanied me for our free lunch. For once, I didn't overthink anything or spend too much time on a craft. I spent less than 5 minutes cutting amoeba shapes out of black construction paper and safety pinning them onto a white apron. Voila!

They gave Maddie a 12 piece chicken nugget kids meal with a huge side of fries and apple juice! It was an absurd amount of food. Her three siblings helped eat the remains that we brought home. It was the first time any of the babies ate a french fry. They were a huge hit. I had my bunless chicken sandwich and a couple of fries. Free food always tastes better.

We also managed to have some family fun at the pool, the museum, and around the house this week. I wouldn't say that summer is any slower-paced than the school year, but it definitely helps having Jesse here to share the responsibility and attention.

PT Update: Hip Helpers

Most of the time I forget all about any concerns that Maddie may have cerebral palsy. She's made such amazing progress in physical therapy. Then I see James and Amelia crawling everywhere and pulling up, while Maddie can't seem to get her legs to cooperate. I showed this picture to the PT yesterday because I didn't know how to correct Maddie when she frequently gets stuck in this position.

I also shared that Maddie keeps resisting some of the new exercises when I try to keep her knees together in a crawling position. We talked about how Maddie practically does a split when she is trying to reach over and grab something.

The PT suggested Maddie wear Hip Helpers to try and correct her hypotonia. Hip Helpers are basically bicycyle shorts with the legs sewn together. She said another client was borrowing the pair that would fit Maddie, but we could make our own. She asked me if we had any leggings a size too big. I grabbed a pair out of the closet. Since we have dozens of leggings, I let the PT trim the leg hole. We put both of Maddie's legs through one leg hole. Maddie was immediately off balance and fell over.

The PT explained that Maddie has strengthened her leg muscles but her core remains weak. Without using her trunk she is not going to be able to crawl or walk. We are supposed to make Maddie wear our DIY Hip Helpers for 20-30 minutes a couple of times a day.

When Maddie is wearing her legging, she is having to relearn how to reach for objects in a seated position using her core muscles.

It's disheartening to feel like we're starting over despite all the progress she's made. I just want my baby girl to catch up with her siblings.

Maddie's Moving Out

After over 10 months, I've finally conceded to Maddie sleeping in her crib in the nursery. She's slept 12 uninterrupted hours in her crib for the past three nights. It still makes me a bit sad to know that my baby is a big girl. I've always been more protective over her and miss having her in our bedroom. Still, there's no reason why she shouldn't sleep in her room and she's clearly content there. 

After packing outgrown clothing into storage today, I stumbled upon Maddie's preemie sleeper that she wore her first night home. Comparing it to her 9 month pajama set that she wore tonight is shocking. Where did my tiny girl go?

Tooth Report

At 10 months old, Maddie remains the only baby in the house with teeth. I finally took a decent picture of her two front teeth.

We're impatiently waiting for James and Amelia to cut their first tooth.

PT Update

Maddie is rocking physical therapy! I am so, so proud of the progress she has made in five short weeks. Maddie's physical therapist is contracted out through the county's CDSA. During the physical therapy session yesterday, members of Maddie's Early Intervention team came out to watch Maddie in action with the PT. We reassessed her Individal Family Service Plan.

The IFSP goals were created two months ago, on March 10. EI ensures that the goals are functional and will help Maddie gain independence. Our original goals were:

1. Maddie will feed herself by holding her bottle and picking up finger foods.
2. Maddie will tolerate tummy time for extended periods of time.

We were able to mark off both goals as ACHIEVED! (She still doesn't prefer being on her stomach, but because she is able to move around on her tummy and roll over, we can't force her to stay on her tummy any longer.) We had to revise the IFSP to include her new goal of moving throughout her environment independently. More specifically, we are working on helping Maddie transition from prone position (on her tummy) to sitting, and sitting to prone. 

Despite a rough start, our PT really is fabulous. She has acclimated to my obsessive picture taking habits. She'll even hold the pose to make sure I got video or pictures. And if it wasn't to her ideal standards, she'll say, "Wait. Do another one." She knows that I actually refer to the pictures to help me work with Maddie.

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Jesse and I try to work with Maddie three times a day for 20-30 minutes each time using the stretches I learn from the therapist. I work with her after breakfast and lunch; Jesse works with her after dinner.  Jackson knows when I roll the ball out that it is time for Maddie to "exercise".  Madeline loves the ball, but she is so good at the ball stretches that the PT told us to use the ball as a warm up and cool down. We have a lot more floor exercises to incorporate. The PT makes it look so easy but I am not very fluid with the movements.  

These are the series of stretches to encourage Maddie to move into a sitting position.

When she is in a prone position,

tuck her knees under,

roll her from knees to hip,

and wait for her to walk herself up with her hands

until she is sitting upright.

I'm not going to lie, I haven't even come close to mastering moving her from knee to hip in a natural motion. Neither has Jesse. Hopefully we'll figure it out before next week.

PT: Take Two

After last week, I had pretty low expectations for physical therapy this week. Maddie's social worker contacted me after the initial session to get my feedback. I was assured that this PT is highly recommended and was having a very atypical day. Still, I was skeptical.

Once again there was a mix-up on the time. Instead of being late, the PT was 20 minutes early. Jackson must have let her in while I hopped in the shower because I came downstairs wearing a bath robe and she was sitting on our couch!  Oh well...at least I wasn't naked. I guess I need to view PT appointment times as a window of time rather than set in stone. 

Despite a strange start, we had a very productive 75 minute session. I naively thought she would just toss Maddie on the ball, but it was so much more complex!  I felt like the PT's little pupil. She followed an "I do. We do. You do." model.  (Not that she used that language. That's just the teacher in me talking.)  She would do different stretches or positions with Maddie, then explain why it was helpful. Then she would have me do the exercises with her hands on top of mine or assist me in balancing the ball. Finally, she let go so I could do it by myself and give me feedback. I asked if I could take pictures to reference for later use. 

Here are some of the things I learned to help Maddie practice each day:

• With my thumbs on her thighs, I can support Maddie in a seated position on the ball.  Keeping her belly button straight and utilizing the movement of the ball, I can rock her from side to side and front to back. This helps stabilize her core. The PT said that even if it feels like Maddie's falling over and losing control, let her feel that movement to help trigger her reflexes. It's also good to bounce the ball the entire time to help loosen her joints and soothe her.  (I haven't mastered rocking and bouncing at the same time yet.)

• Another exercise that Maddie did really well with is to simply put the ball a few inches from the couch (or another person) and roll it towards her. The point is to have Maddie apply weight on it with her hands. This helps her open her hands rather than keep them in her usual clenched fists because she likes to try and grab the ball and push on it.

• Of course we spent a fair amount of time doing tummy time on the ball.  It provided great support for her because she was on eye level with me without me trying to lay down on the floor. I could talk and sing to her more easily. The other great thing about tummy time using the ball is I can adjust the level of difficulty by working with or against gravity. When she got tired the PT just rolled the ball backward so she was almost in a standing position. She also bounced and rocked the ball, forcing Maddie to continuously stabilize her core.

• Another exercise that was exciting to see was supporting Maddie on a hands and knees position on the ball. The PT said that even if she gets tired and rests her head on the ball, it's still important to activate her leg muscles and get her comfortable in that position.

• We also did some floor exercises. One thing that was interesting that I had never noticed before was that Maddie doesn't twist her trunk to get something. If she is sitting up, she'll lean forward or to her side, but she doesn't turn to pick up a toy. If a toy is out of her immediate reach, she gives up. She should be supporting herself on one arm and rotating to use her other arm to pick it up. This is the same motion that will help her roll from back to stomach, which she is currently unable to do.  And if she can't roll from back to stomach and pull up, she's never going to crawl. We did several side stretches and helped her twist. 

As the PT was getting ready to leave, she let me know that she has Tuesdays at 11:30 available. I don't know what changed in her schedule from last week, but I'll take it!  I went to Target and bought an exercise ball a few hours after she left and have already begun working with Maddie. I'm feeling very optimistic about the progress we can make with our sweet Madeline.

Maddie's Medical Timeline: The Unofficial Diagnosis

Monday, July 15 @ 1:49 p.m.--Maddie (Baby C) made her entrance into the world via C-section.  The nurse showed us our girl before whisking her away to be evaluated by the NICU team. Her Apgar scores were solid (8 and 8).  Suddenly, at 6 minutes she went into respiratory distress and required positive pressure ventilation using Neopuff resuscitation.  The notes do not indicate how long she was in distress, though she was reunited with us in the recovery room by 2:15 and remained with Jesse and I until she was discharged.

Wednesday, July 17-While Maddie passed the routine Congenital Heart Disease Screen, a murmur was heard.  An echocardiogram was ordered and a PDA was detected.

Thursday, July 18-Maddie was discharged from the hospital.  Though she was eating well, her reflux caused her to loose over 10% of her body weight.  She dropped below five pounds.

Friday, July 19-Maddie saw the pediatrician and was prescribed Zantac.

Thursday, August 1-At the two week well check, Maddie weighed 5 lb, 8 oz (1 oz shy of her birth weight).  Her Zantac dosage was doubled and we were advised to keep her upright for at least 30 minutes after each feeding.

Wednesday, September 18-We took the babies to their two-month well check, only to find out that our pediatrician would not accept our insurance cards.  We were denied being seen. 

Late September-We finally got a prescription for Prevacid since Maddie's reflux was getting worse.  I assumed her intolerance to tummy time was a result of the reflux.

Saturday, October 5--A casual play date resulted in a conversation with a mom who happened to be an occupational therapist.  She suggested Maddie might have torticollis since Maddie's neck was extremely tight.

October/November-
-Madeline received chiropractic care throughout this time period.  After dozens of adjustments, she regained neck mobility and loosened up a bit. 
-After multiple phone calls and visits, we still did not have correct insurance cards.
-Our pediatrician left the practice and we could no longer get a refill on Prevacid.  Maddie began to loose weight.  She struggled severely with tummy time, which I continued to attribute to her severe reflux.
-This was the first time I noticed a discrepancy in motor skills between Maddie and her siblings.

Friday, December 6-We finally found a pediatrician in another county that accepted new Medicaid patients.  The trio had a thorough appointment, were examined, and received vaccinations.  At almost 5 months old, Maddie weighed 9 lbs even.  Our new pediatrician wrote a new prescription for Prevacid.  Weight gain and reflux was the primary concern, though it was noted that she was developmentally delayed.  We decided to wait until her six month check before referring for Early Intervention services.

December/January-Our happy girl had returned.  Reflux was finally under control with regular meds and introduction of solids.  Maddie began making a variety of new sounds and interacting with others.  Tummy time and rolling over continued to be a struggle.

Thursday, February 6-At the six (almost 7) month well check, Maddie weighed 11 pounds even.  While the doctor was content with her weight gain, there was still concern that Maddie kept her fists closed, and did not transfer objects or roll over.  She requested Early Intervention services through the county's Children's Developmental Services Agency.

Monday, February 10-Maddie saw the pediatric cardiologist to follow up on her heart murmur.  The PDA had closed, though she still has a PFO.

Wednesday, March 5- A team of 5 individuals (including social worker, case manager, OT, PT, and SLP) came to evaluate Maddie for Early Intervention services.  She automatically qualified because of IUGR (intrauterine growth restriction).  She was evaluated in the following developmental areas: cognitive, physical (fine and gross), communication, social-emotional, and adaptive.  She scored age-appropriate (7 months) in most areas.  However, her physical/gross motor skills were equivalent with those of a 2-3 month old. Her birth notes were reviewed and they emphasized her loss of oxygen at birth. Due to all these factors, they recommended that I seek a referral for a pediatric neurologist to rule out cerebral palsy.

[insert 2 days of sobbing here]

Friday, March 7-I took the triplets for their second round of the flu shot and requested a referral for a pediatric neurologist.  An appointment was made.

Monday, March 10-The EI team returned to create an IFSP (Individual Family Service Plan).  Because Maddie has over 30% delay in gross motor skills, she qualifies for weekly physical therapy at home. 

Tuesday, March 18-The appointment with the neurologist was informative and reassuring.  The doctor clearly stated that Maddie exhibited several "soft signs" that support cerebral palsy such as clenched fists, tight muscle tone in arms, and low muscle tone in trunk.  Her "prognosis" was that Maddie had "mild to moderate cerebral palsy". The only way to diagnose cerebral palsy is with an MRI, which would require an hour of anesthesia.  She told me that she would request an MRI only if I needed a label, but asked me to consider if it would change any course of action that we did.  We both agreed that the risks of anesthesia were unnecessary.  Our plan of treatment is to begin regular PT (beginning with once a week and increasing in frequency as needed) and continue to see the neurologist every 3 months until Maddie reaches the age of 2.  An MRI would be ordered if she shows a regression at any time or if we need a diagnosis for insurance/therapy purposes. 

The neurologist informed me that it is very possible that Maddie could be meeting developmental milestones and catch up to her peers by age 2.  It could be equally possible that she would require braces to assist her in walking.  Early intervention is critical and we are following all the right steps.   The good news is that her delays are only physical and it does not seem to impact speech, social, cognitive, hearing, feeding, etc.  Maddie can even grab objects (cheerios, pacifier, graham cracker) with her thumb and pointer finger, which is something James and Amelia haven't mastered yet.  The neurologist was also optimistic about her "prognosis" because she had great anticipatory reflexes. 

Now we wait.  We wait and see what impact physical therapy has.  We wait to see if additional time is in her favor.  We wait to see what God has in store for our beautiful girl!

6 Month Well Check and Cardiologist

The trio had their 6 month well check last Thursday (though they're really closer to 7 months old).  Here are the highlights for each child:

James-He weighed in at 15 lbs, 7 oz.  Neither the doctor or Jesse and I had any concerns.  James prefers putting weight on his legs and jumping than he does sitting or rolling over.  While looking in his mouth she said, "Those teeth are right there." James was especially silly and talkative throughout the appointment.

Amelia-Her weight was 14 lbs, 9 oz. At her last check we had expressed concern over a mildly flat head.  It has corrected itself now that she spends more time on her tummy or in a exersaucer or bumbo.

Maddie-She weighed 11 pounds even.  While she is clearly still the runt, she's holding her own.  All three babies gained around two pounds in the last two months.  The doctor was pleased that Maddie was putting on weight and has made excellent progress with trunk control.  She was concerned that Maddie is continuing to keep her fists closed and doesn't cross the midline.  For example, if Maddie has a toy in her left hand, she never puts it in her right hand.  People always comment on how sweet and dainty Maddie is because she always keeps her hands clasped together in front of her.  However, this is not developmentally appropriate for a six month old.  Our pediatrician referred us to get her evaluated and receive OT at home through early intervention services.

The babies had four vaccines each: DTaP, Hib, PCV, flu.  They go back in one month for the second dose of the flu vaccine.  At 9 months they will be caught up with all their vaccines.  (There aren't typically shots at the 9 month check, but we had a delayed scheduled.)  It took longer to sign permission the forms than it did to administer the shots, thanks to two very efficient nurses.

Unfortunately, the shots had an ill effect and all three babies were crying and ran fevers the following day.  At least one baby was up fussing every half hour throughout the night.  Amelia wouldn't keep any food down until mid-afternoon. It took until Saturday evening for the trio to return to their predictable moods and schedule.

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Maddie had her cardiologist appointment scheduled for Monday afternoon.  Scheduling the follow up was a headache in and of itself because the cardiologist was adamant that Amelia was the one with the heart murmur.  I assured the office that it was Madeline who had the echocardiogram in the hospital when she was three days old.  We finally tracked it back to original paperwork for"Baby C", which was indeed Madeline, not Amelia.

The cardiologist's office is located one floor above my MFM's office.  I felt all kinds of nostalgic navigating the parking deck, elevators, and corridors.  I was excited to listen to Maddie's heartbeat and watch the blood flow on the machine, just like when she was in utero.

The nurse, pediatric cardiologist, and ultrasound technician were completely smitten with Maddie's smiles and coos.  I don't think any of them ever made eye contact with me because they were so enamored by our sweet girl.  Before the appointment, my main concern was how Maddie's hands and feet turn purple.  Just like the pediatrician, the cardiologist also assured me that it was still typical for infants and was not a result of anything related to her heart.

The cardiologist could no longer hear the murmur and the ultrasound confirmed that the larger of the two holes has closed.  She does, however, have a PFO, which is a pinhole size heart defect.  Apparently, 1 in 5 adults has a PFO and most people with PFOs don't know they have one because they are harmless and have no symptoms.  He told me the only time it would be an issue is if she wants to go deep sea diving.  He also let me know that there are current studies about the correlation between PFOs and strokes, but there is nothing preventative or treatment for it. I'd rather not dwell on that possibility.

Maddie was very cooperative during the ultrasound.  I held her hand, not because she needed comfort, but because she kept trying to grab the cords.  The tech printed a picture for me and said, "Here's your first Valentine from her."

Misnomer

FYI, these so called "Safety" nail clippers are nothing of the sort. 

Or perhaps I just don't know how to safely cut the tiniest of fingernails attached to one very wiggly Madeline.  I may or may not have clipped the tip of Maddie's fingertip while trying to cut her nails. 

My stress levels skyrocketed with each new blood soaked tissue.  It finally stopped bleeding after 20 minutes and you can barely notice it a day later.  Someone, please teach me how to cut tiny fingernails!

And just because I don't want to end on a bad note, look how much my sweet Maddie has grown.  She may be the runt, but she's certainly getting bigger.

Quick Maddie Update

Praise God for Prevacid. Maddie is back to her smiling, cooing self.  She takes four fortified bottles (4 oz of breastmilk with 1 scoop of formula) each day.  She is still spitting up, but nothing projectile and nowhere near the volume that it was without the Prevacid.  Now let's just hope it's enough to help her put on the weight.

The most exciting news is that she is briefly holding her upper body up during tummy time without crying.  This is a huge improvement for our sweet Maddie Moo!

Chatterbox

This is what I heard when I came out of the shower:

Love my Maddie Moo!