5th percentile

by Kayte

Lola had another great 6-month check up at the endocrinologist today. She gained another two pounds which finally put her over the 30-pound mark for the first time, and grew another 1-1/2 inches. She’s in the 5th percentile for weight and the 31st percentile for height. I remember we were so unsure when we started this grown hormone journey, but Lola is doing so well and I’m glad it was the right decision.

 
Height: 41.5 inches
Weight: 31.7 pounds


Bittersweet Anniversary

by Kayte

Today marks the one-year anniversary of Lola’s discharge from her month-long hMPV-/MRSA-pneumonias + fungal-infection-scare hospital stay. It’s been a rough medical year since then; we’ve dealt with chronic ear infections, multiple surgeries, and another pneumonia hospitalization. Worse than that is the fear that grips us every time Lola spikes a fever, and a loss of confidence in our normalcy that I didn’t experience post-NICU. I’m conflicted between feeling invincible because we have conquered so much, and feeling that we have cheated death and are flying too close to the sun. Looking back at where we started I am in awe of the miracle of life and medicine, but I am also all too aware of their fragility and limitations. Ignorance is bliss as they say, and we have learned much these last five years. I am hoping time will heal these emotional wounds, as time continues to heal our little miracles and grow them into strong[er], [more] resilient little kids.

IMG_5655

On a more normal note, we spent the morning at the pediatrician’s office with two mildly sick kids. Poor Maxie has had a cough since last Monday and a runny nose that got markedly worse over the weekend. Max’s O2 sats were on the low-end of normal and the doctor said his lungs sounded wheezy, so we’re starting breathing treatments and have a prescription for antibiotics if Max doesn’t get better in the next day or two. Lola spiked a little fever this morning and had one goopy eye, but luckily her lungs sounded clear as a bell (yay steroids!). The pediatrician suspects that Max might be on the recovery side of this bug while Lola might just be starting it, but we have an antibiotic prescription for her too if she needs it.

We weighed the kids at the doctor’s office today. Max is approaching the 40-pound mark which means yet another carseat transformation; he’s too heavy for the LATCH anchors that make carseat installation super easy, so now we’re struggling to install the carseat using the shoulder-lap belt. After he grows out of this carseat configuration (65lbs/49in), he will move to a booster seat and use the car’s regular seatbelt (vs. the carseat’s 5-point harness). At 40 pounds he also exceeds the weigh limit for our regular stroller, but we haven’t really been using it much lately. Both kids prefer to walk and Max can unbuckle himself to climb out and/or unlock the brake and push himself around wheelchair-style. Slowly but slowly we are moving away from mounds of baby equipment.

Lola weighed in at 32-1/2 pounds – not only has she broken the 30-pound mark for the first time (yay!) but it’s crazy to think that she weighed 10 pounds less a year ago when she lost so much weight in the hospital. She’s 50% bigger than she was a year ago – wow!

Weight
Max 39-1/2 pounds
Lola 32/1/2 pounds


Double Surgery

by Kayte

Today was the day of Max’s hemangioma and Lola’s ear tube surgeries. We weren’t sure if scheduling them on the same day was crazy efficient or just plain crazy, but it ended up working out really well. They were both scheduled for around two in the afternoon, and we were able to all stay together during pre- and post-op. Surgery was an hour late, Max slept for two hours post-op, and we ended up driving home in rush hour traffic; so we’re really glad that we only had to do this whole thing once.

img_5097

img_5098 img_5099
Max and Lola were both amazing – there was no fuss and they both just went along with the flow. They each drank a shot of Versed (a sedative, aka “Happy Juice”) before surgery so that helped when it came time to take them away for surgery. Max’s medicine took effect right away and he got pretty goofy. Meanwhile Lola got super agitated and kept trying to climb out of bed (which she couldn’t do because the medicine makes them tippy). Different personalities shining through.

img_5102

img_5103 img_5104
Lola’s surgery only took a matter of minutes – we had barely sat down in the waiting room before the doctor came to talk to us. He said everything went well and they got a lot of thick, syrupy liquid out of Lola’s right ear. She’s on antibiotic ear drops for a few days, but otherwise back to normal activity. Max’s surgery took a little longer, but only about a half hour. The doctor said the incision ended up being a little longer than he anticipated, but it still shouldn’t be too bad of a scar. Max’s incision is closed with absorbable sutures, medical glue and covered in a skinny piece of derma-bond so we can’t see much, but it should be pretty healed up in two weeks when we go back for our follow-up appointment. Max is supposed to stay home from school tomorrow and take it easy, but back to regular activity after that.

img_5109

img_5110

Very glad to have these two surgeries out of the way with relative ease!

Max
Weight: 37lb 8oz
Height: 41 inches

Lola
Weight: 29lb 11oz
Height: 40 inches


30th Percentile!

by Kayte

Lola had her six-month checkup with the endocrinologist today. She gained another 2 pounds and grew another 2 inches which puts her in the 3rd percentile for weight and the 30th percentile for height! Needless to say the doctor was very happy with her progress.

img_7797

 

They also did an x-ray which put Lola’s bone age at 2.75 years. According to the doctor this is actually a good thing because it shows that she still has a lot of potential for growth. If Lola’s bone age matched her actual age it would mean that she was maxed out at the 30th percentile, but because her bone age is nearly 2 years behind her actual age, she still has room to grow.

2016-10-10-BoneAge

I never noticed this on her chart before but I think based on our (parents’) height the doctor has her natural growth potential (stature) highlighted at the 50-80% range between 5’5″ to 5’7″.

img_7798

 

Height: 40 inches
Weight: 29.5 pounds


Vascular Anamolies Clinic

by Kayte

We took Max to a Vascular Anamolies Clinic to have his hemangioma looked at. The appointment was supposed to be an opportunity to meet with four different doctors at the same time: pediatric surgeon, plastic surgeon, interventional radiologist and dermatologist. But, even though we booked this appointment months in advance specifically on a Wednesday (which is the only days they hold the clinic) and spent a good deal of time getting insurance approvals and drove downtown during morning rush hour…only one doctor showed up. The pediatric surgeon said Max’s is a fairly straightforward case: the hemangioma probably won’t shrink any more than it already has, and leaving it puts Max at risk of the skin catching/tearing, especially as he gets more active in life. The surgeon recommended that the hemangioma be surgically removed, a procedure that is statistically safer than getting in your car and driving to the doctor’s office. Which is all fine and pretty much what we expected, but it would have been way less hassle to go to a local pediatric surgeon and hear the same thing. I think our pediatrician will still tell us to go to the clinic for the surgery since it does require general anesthesia and Children’s Hospital specializes in kids.

IMG_4873 IMG_4874
Weight: 36 pounds
Height: 3ft 5in


Wellness Visit

by Kayte

Max and Lola visited the pediatrician for their yearly physical today. Overall everything looked good. Max was 35 pounds and 40 inches (50th percentile for both). Lola was 26-1/2 pounds (3rd percentile) and 38-1/2 inches (25th percentile). The pediatrician couldn’t believe Lola’s height! He was so happy to see her growing.

They both received DTaP and Polio vaccinations. (4 shots, 0 tears!) Lola had her blood drawn for a PCV (pneumococcal conjugate vaccine)  antibody titer in response to the PneumoVax 23 she received last month:

“The antibody titer is a test that detects the presence and measures the amount of antibodies within a person’s blood. The amount and diversity of antibodies correlates to the strength of the body’s immune response.”- Healthline.com

We should have the results some time next week. The doctor said the hemangioma (strawberry birthmark) on Max’s arm should have gone away on its own by now, but since it hasn’t we were referred to the Vascular Anomalies Center at CHLA. They will assess the hemangioma to see if it might still go away on its own, or if we might need to consider surgery.

Despite everything these kids have been through they still LOVE going to the doctor.

IMG_3206

IMG_3207

Max
35 pounds | 40 inches
Size 4T

Lola
26-1/2 pounds | 38-1/2 inches
Size 3T


20th Percentile!

by Kayte

We’ve had a busy week at CHLA this week. Infectious disease on Monday, and endocrinology followup today. In the six months since our last visit, she’s grown another 2 inches and gained over 2 pounds. She is now in the 20th percentile for height, and in the 1st percentile for weight – which puts her ON the growth chart for weight for the first time ever! Needless to say, the doctor is very happy with Lola’s progress. No bloodwork or x-rays today. He increased her growth hormone dosage and we’ll be back for another followup in October.

IMG_2703

IMG_2512

Weight: 26lb 14oz
Height: 38 inches


Infectious Disease

by Kayte

We enlisted yet another specialist at CHLA: infectious disease. Our pediatrician wanted us to follow up with them to see if they had any insight on Lola’s “trifecta” (viral, bacterial, fungal) of infectious diseases while in the PICU. Unfortunately, or thankfully (?), they did not have much to offer. They said the hMPV hit hard this winter, and it probably hit Lola harder because of her history, young age, and small stature. There’s not a lot we can do to prevent viral infections in the future, but as Lola grows older and bigger her immune system will be better equipped to fight them off. In the meantime she’s happy and healthy and growing!

IMG_2459

Weight: 26lb 14oz
Height: 38 inches


Infusion

by Kayte

Day 22. No growth in any of the cultures. We rendezvoused with Max outside. Lola hopped off her couch and out the door of her room, wanting to walk around the PICU for nearly an hour: some of it even on her own. They looked into getting home health care for us to finish the infusions at home, but no one would take Lola’s complicated combination of being a pediatric patient, with an IV (not a PICC), and on amphotericin meds. Looks like we’re seeing this thing through until Saturday. Lola had been getting her infusions from 4pm-6pm, with 30min of prep beforehand and an hour of flush afterward. Today I asked the doctor to start moving Lola’s infusions earlier in the day each day, so by the time Saturday rolls around her last infusion will be early in the morning and we can be out of there as soon as possible. #exitstrategy #gameplan

IMG_6141

Weight: 25lb 2oz


Walker

by Kayte

Lola has another good day. Each day she’s becoming more and more animated. She was chatting up a storm today. We’re getting to the point of being a little stir-crazy cooped up in a (fortunately private) hospital room with a semi-energetic toddler. At least now that she is hooked up to fewer wires she’s able to move around a bit more. She likes to get out of bed and sit on the couch, and she’s even able to stand and walk around just holding one hand. She’s so much stronger than even two days ago when the PT had to help support most of her weight.

She gained back almost another 1/2 pound and is eating well. I think she’ll do even better once we get her home and can start making her more familiar foods. This hospital fare is obviously not the best, although they did let her order a filet mignon from the adult menu for dinner tonight! They stopped one of her breathing treatments (pulmozyme) and stopped her CPT therapy, so respiratory-wise she’s just getting pulmicort (steroid) twice a day. They might send us home with the pulmicort like they did in the NICU. Tomorrow will be day 5 of the blood/urine cultures so, assuming they’re still negative, we will stop the second antibiotic. That just leaves us with the MRSA antibiotic (vancomycin) which they will switch to an oral dose at noon tomorrow. If Lola is able to stomach that we may be home free on Friday!

img_3511.jpeg img_3510.jpeg
The doctors did warn us that it could still be a long recovery once we get Lola home. She may not be able to walk by herself, and might require outpatient PT. Her lungs are still damaged and weak, and could take months to fully recover. They also recommended that we seriously consider keeping Lola out of school until this cold/flu season is over (April-ish) because she will be so vulnerable. I obviously don’t want to go through this ever again, but it’s kind of throwing me for a loop. We were on germ-lockdown the first two years of their life post-NICU and I had just finally started feeling “normal.” I know that this could (and does) happen to perfectly healthy full-term kids, but I just hate this feeling of being scared of every germ, cough, and sniffle. I guess ultimately we will just have to see how Lola does at home and take our cues from her. April isn’t too far away after all…

Weight: 24lb 4oz


Goofy Girl

by Kayte

Today was a big day of milestones. 1) Lola is off the nasal cannula! Totally breathing on her own at room air. Her lungs are still diminished and will take awhile to fully heal, but now she’s more like a kid with a cold than a kid with a critical illness. 2) She’s been upgraded to regular pediatric status – no more intensive care, although we (any many of the nurses) are hoping they let us stay in our private room in the ICU until discharge. 3) Lola is free of all tubes and wires except for a small pulseox monitor on her big toe. She still has the PICC line for Q6 antibiotic administration, but in-between doses she’s unattached.

The final word on her MRSA infection is that she will need to be on antibiotics until Monday, February 22nd. The majority of the doses need to be through IV, but we could get her home a few days early if she’s able to take the antibiotic orally. On Thursday the 18th we will switch her to an oral antibiotic in the hospital to see if she can handle it, and if all goes well we could be going home on Friday the 19th.

IMG_1254 IMG_1256 IMG_1259
Lola’s appetite was much better today. We started placing special orders from the adult menu; like sausage & bacon for breakfast, which she chowed! She’s eaten peanut butter & crackers, chips & guacamole, pizza, a pat of plain butter, and milkshakes. Her weight check today was a 1-1/2 pound gain from yesterday which everyone was really happy about. She’s still 2lb less than when she was admitted, but at least we’re moving in the right direction.

Lola was even more alert today and starting to talk more. Her voice is still quiet and hoarse, but she’s talking in sentences rather than one-word whispers. She’s very mischievous right now. Her favorite activities are bonking her stuffed animals, pretending to hold your hand while nibbling your fingers, chewing on her tubes/wires, emptying boxes of kleenex/wipes, throwing stuff off the bed, etc. Making up for lost time I guess.

Weight: 23lb 12oz


Super Lola

by Kayte

Lola had another her great lung day. They downgraded her machine from a high-flow Vapotherm to a low-flow cannula, and continued to wean her support. She’s currently on 1 liter of flow at 21% oxygen (room air), which I think is as low as you can go. Lola continues to get breathing treatments (pulmozyme and pulmicort) and CPT (chest physiotherapy). She has also been getting PT once a day to work on strength and balance; she’s sitting up much better, but still can’t walk unassisted. The PT warned us that Lola will probably not be able to walk on her own when she goes home.

img_3504.jpeg img_3506.jpeg img_3502.jpeg
The doctor’s two major concerns now are infection and eating. The blood and urine cultures didn’t grow anything these last 48 hours so I think we are cleared in terms of a secondary infection. We are still waiting on infectious disease to give us the word on her MRSA status, and how long we might be in the hospital on antibiotics to treat it. Eating-wise Lola isn’t throwing up anymore, which is a good thing, but she still is not eating much. She has lost 3-1/2 pounds (15% of her body weight) since we were admitted to the hospital, and the nutritionists are trying to figure out how to get more calories into every bite she takes. We’ve tried peanut butter, avocado, olive oil, yam, butter, nutritional drinks, ice cream, and protein shakes; all with meager success. Progress is slow, but her appetite does seem to be returning a bit. In the meantime we’re just trying to feed her often and make sure she’s drinking lots of fluids.

img_3503.jpeg
And real clothes – yay!

Weight: 22lb 0oz


All Smiles

by Kayte

It’s like she can’t stop smiling.

We’ve been weaning vent settings all day and Lola is still satting great. But we still have a long road ahead of us. At least another 3-5 days in the hospital, a week of rest at home, and possible outpatient PT to regain her strength. They weighed Lola today and she has lost a whopping 3 pounds during her hospital stay. At 25-1/2 pounds to start, she didn’t have much to spare. Extubation was a huge step, but it just moved us out of the critical phase and into the serious healing phase. Lola also spiked another fever today so they’re running a barrage of blood/urine cultures to find the source and starting her on a second antibiotic to cover whatever’s not being covered by the MRSA-antibiotic.

All of that aside: being here with her, seeing her smile, hearing her croaking laughter; it feels like we won the lottery.

Weight: 23lb 8oz


Pneumonia

by Kayte

Lola was still breathing heavily even with the breathing treatments, so I took her back to the pediatrician on Tuesday. They did a chest x-ray and found fluid in the lungs. Pneumonia. They sent us home with antibiotics and instructions to take her to the hospital if her breathing and fever continued to get worse.

Lola continued to struggle to breathe throughout the rest of the evening and her fever continued to climb. When Brody got home from work he took her to the ER. They found her blood oxygen saturation was really low (86%) and they admitted her to the hospital.

Another chest x-ray confirmed the pneumonia and they started Lola on a different course of antibiotics. She’s getting breathing treatments, oxygen support, and manual Chest Physiotherapy (CPT), which helps to break up all the gunk in her lungs so she can cough it up. We could be here for a few days.

IMG_0500 IMG_0468
Weight: 25lb 13oz


3T

by Kayte

The weather has cooled down lately and I realized that I had no long pants for Lola. She had completely grown out of all her 2T clothing! I was dubious when I pulled out the 3T pants, but when I put them on her the length was perfect.

Her waist, however, is another story. I’m having to take in at least 2-3 inches from all her pants. It leaves a funny little tab in the back*, but at least her pants aren’t falling down.

IMG_3226.JPG IMG_3227.JPG

*I know I could cut and properly alter the pants, but I want to preserve their original form 1) in case she ever grows into the waist or 2) so I can hand them down to friends.


12th Percentile!

by Kayte

Lola had her six-month followup with the endocrinologist. In the year since we started growth hormone, she has grown 5 inches and is now in the 12th percentile for height.  She is still a peanut on the weight-chart (25-1/2 pounds and 0th percentile), but the doctor confirmed that once she catches up height-wise her calorie consumption should shift toward affecting her weight too.

While at the hospital we also did a bone age scan (x-ray) which showed that her skeletal structure is comparable to a 2-1/2 year-old. So she’s about a year behind and we still have a ways to go, but the progress thus far is amazing.

Grow Lola Grow!

IMG_3117.JPG

IMG_3118.JPG

IMG_3119.JPG

2015-10-21-BoneAge

Weight: 24lb 8oz
Height: 36 inches


Wellness Visit

by Kayte

Max and Lola had their three-year wellness visit at the pediatrician today. It’s crazy to think back to the days when we visited the doctor every other week. Now their scheduled visits are only once per year. We had a pretty fun time. Not too many concerns – just some minor toddler transition questions (forward-facing carseats, bite-sized food, etc). The doctor made balloon Humpty Dumptys for Max & Lola and let them play with stethoscopes and tape measures. They each got one vaccine shot and neither of them even cried. They really are getting to be big kids!

IMG_2615.JPG   IMG_2616.JPG
Max
32 pounds | 36 inches
Size 3T

Lola
22 pounds | 34 inches
Size 2T


Growth Chart

by Kayte

Lola had her 3-month checkup at the endocrinologist today and she is finally on the growth chart! For height at least, if not weight. Since our last visit she has grown another inch and gained a little over half a pound. That puts her in the 3rd percentile for height (still at 0% for weight). The doctor said it is normal for the height to increase faster than weight – all those calories are being used for growing, not gaining. Hopefully once Lola’s height has “caught up” she will start packing on the ounces. She has been looking SO darn skinny to me lately, I guess because she’s getting stretched out vertically. She’s grown into 2T sizes length-wise, but her pants barely stay up around her waist. If it weren’t for those bulky cloth diapers nothing would fit. Not sure what we’ll do when she’s potty trained!

IMG_2580.JPG IMG_2581.JPG
Weight: 21lb 13oz
Height: 34 inches


Two Inches

by Kayte

Lola had her follow-up with the endocrinologist today. In the three months since we started growth hormones, she grew 2 inches and gained 1-1/2 pounds. Based on our last pediatrician appointment we were expecting a good report, but it’s always nice to have it validated by the medical professionals.

The 2 inches is an especially big deal. Normal growth for toddlers is 2 inches per year — and she grew that much in three months! This means she is responding perfectly to the growth hormone treatment and exhibiting what the doctors call “catch-up growth.” Things should slow down eventually (they don’t expect her to grow 8 inches in a year) but until then they said she can’t grow too fast. She’s still not even on the growth chart, so we still have a ways to go.

We also did some bloodwork while we were at the hospital just to make sure all of her internal levels look good. Should get the results in 1-2 weeks. In the meantime we’ll just keep doing what we’re doing. We will have follow-up appointments every 3-4 months until the doctors are confident that everything is stable, then every 6 months after that. Until she hits puberty. We definitely have a long road ahead of us, but at least we know we’re on the right one!

IMG_2309.JPG IMG_2310.JPG IMG_2311.JPG
Today was also the first time Lola was able to stand by herself on the big-kid scale instead of having to lie down on the baby scale. Big girl all-around.

Weight: 21lb 3oz
Height: 33 inches


Growth

by Kayte

It appears that the growth hormones are working! Lola had her 2-1/2 year checkup with our pediatrician today, and in the last month she has gained one pound and grown one inch. She now weighs 20lb 11oz and is 32.75″ tall. Assuming all the measurements were correct (accuracy can be difficult with wiggly little kids) the 1″ is an especially big deal. Normal growth for toddlers is ~2″ per year so this would be a big catch-up. Our next appointment with the endocrinologist is in January so we will know more then, but it seems like we’re on the right track.

Meanwhile Max is 28lb 8oz and 35″ tall.