Lyla's First Haircut

At 14 months old, you would think Lyla is well overdue for a haircut. But because she hasn't been able to hold up her head for long periods of time, she's constantly rubbing her head on the floor. As a result the hair around the side of her head is very short (about 1" or less), and the hair on the top has grown incredibly long. Sheena cut off a total of 5 inches just to even it out with the other hair on her head.

Steps

Lyla is truly taking Lyla-steps. She progresses at the rate she wants, but she seems to be on a slow and steady increase. Her biggest concern right now is growth. She's had a very hard time keeping down her formula, so we've switched her to 'neocate' formula, but so far there's no noticeable difference other than maybe a very slight improvement. With our visit this week to her Infectious Disease doctor, it was concluded she does not have a reoccurring fever syndrome (which would be terrible if she did), but weight concerns will leave her with increased susceptibility going into the winter months.

This week she's been to the ID doctor, had a blood draw, and scheduled a consultation with a surgeon regarding a potential for Fundoplication surgery (the same surgeon who installed her g-tube).

Transferring Toys

This month Lyla has been transferring toys from one hand to another and then back again! It's been so amazing to watch her do this intentionally. She is rolling all over the place and doing really well keeping her head up. When on her belly she likes to lean onto one elbow and throw the other one back behind her. She is still spitting up, and we hope this ends soon! Her weight is teetering and 12lbs.

Catch Up

This blog has sadly been neglected. We know that a lot of you out there still check this blog and we wish we were better about keeping it up to date, but in a way it was a little easier when Lyla was in the hospital because we had more down time sitting in there with her while she slept.  I'm going to try and do recaps of the last 3 months.  This might get pretty lengthy, but I really do want to have a record of all this craziness to look back on.

May:
  After almost 2 months at home post OHS discharge, Lyla got really sick. She had been getting a lot of runny noses and fevers and combined with spitting up and not gaining any weight, we were asked by her doctor to bring her in to the ER. Both Trevor and I were optimistic that this wouldn't be a long stay, but I don't think we realized how sick she was. We were luckily admitted to the PICU. I say "luckily" because that is the 10th floor and that is where Lyla has spent all of her time at UCD. At first it was with the general doctors, and not ICU/cardiac doctors, but in less than 24 hours we switched over to the cardiac doctors. This was a good change because they know Lyla more, but scary since it meant she was sicker than we thought. She had human metapneumovirus amd diagnosed with bronchiolitis and pneumonia. This stay was 10 days long and we went home just in time for mother's day. The rest of the month was filled with Dr. appts. Ophthalmology, cardiology, pediatrician, and a blood draw.

June:
  June was going to be all about fixing Lyla's eyes. First with a nasolacrimal duct surgery, to help with the drainage in her eyes. And then cataract surgery

 

to remove cataracts in both eyes and hopefully give Lyla some vision. But unfortunately, we had to cancel and reschedule appts due to fevers. We had an appt with ENT (ear, nose, throat) for a swallow study. This was really neat to see in x-ray, Lyla drinking and swallowing. I wish I took a video! Anyway, she passed! So we have officially been ok'd to bottle feed. Unfortunately, Lyla gets sick so frequently that we haven't been able to get a good consistent feeding schedule. She is still being fed continuously through the gtube and takes water and formula occasionally from the bottle. 
She's also been getting really good at lifting her head! It's been amazing to see the change. 








July:
  As a result of Lyla's frequent fevers and spitting up, she wasnt gaining weight like she should have been so her cardiologist scheduled for us to be admitted on July 1st. The plan was to have her checked out by GI, ID (infectious disease) to check immunity deficiency, and get some blood drawn. We were there for 4 days and I was ready to leave after the first night! It seemed like a pointless admission. ID didn't feel it was necesary to check Lyla out, and GI didnt have much input since the issue of her "button" leaking resolves when she's not wretching and spitting up. There wasn't anything the hospital stay was doing that we couldn't do at home. Very frustrating. We brought Mabel and Parker to the hospital to watch the fireworks at Cal Expo from the 7th floor. It was amazing how many different firework shows we could see. The Kids got bored however. One good thing was that they could do test runs of Lyla off oxygen and closely watch her sats. She was pretty consistant around 90- mid 90s so they advised us to keep her on oxygen at night while she sleeps and as needed during the day. So wonderful!!! I can't believe how much easier it is to leave the house without the oxygen tank. We had been carting that thing around since April.  We went home on July 5th.

  After discharge Lyla was able to have the eye duct surgery on July 8th. The picture to the right is how the Dr. checks if the eyes are draining correctly. The right eye drained really well and the left eye was way better than pre surgery so we could prepare for cataract surgery.









 We had to wait until the end of July to have the cataract surgery because the Dr went out of town! picture on the left is what Lyla had to wear for 28 hours!









 Picture on the right is what Lyla is currently wearing for 3 weeks. Plus 2 different kinds of eye drops 1 drop in each eye 4 times a day. She's surprisingly been so good about the eye shields and hasn't tried to rip them off. Below is what Lyla's leg looked like after the nurse flushed her IV (wrong) for about 4 days. It still is really purple right at the IV site on her ankle. I'm hoping that starts to clear up soon.

 We had the normal appts between cardiology, pediatrician, and ophthalmology. and cardiologist requested for us to be seen from ID. So Lyla got her blood drawn. The ID Dr's were pretty confident (still) that these frequent fevers/illnesses were due to her age, cardiac condition, and Down syndrome. But the tests were borderline, so more blood was drawn for more specific diseases and now we wait.

  We did take a nice trip to Lake Tahoe in between surgeries and it was really nice. (aside from the mile hike down to the beach) Lyla slept most of the time on a blanket on the sand. I think the sound of the waves lulled her to sleep. Parker and Mabel had a great time too. Mabel wanted to be buried in the sand and Parker wanted to swim out and explore the Lake with Daddy. It was something that we really needed as a family. 

New Epoch

Lyla is home, and feeling pretty good about it. I feel like we've entered a new phase of our lives, moving out of the birth and anxiety for surgery phase, and into the post surgery phase of Lyla's life. Organs are now functioning as they should, so we're working to develop stronger muscles in her, including muscles she'll need to hold her head up.  The hardest thing so far has been that in the hospital "sleeping good at night" means only getting up 2 or 3 times. But add in 2 feeding pump changes, and meds at 10, 12, 3 & 6, you're talking about getting up and out of bed about 9 times overnight. Luckily our calendar is wide open in the wee hours.

Sheena, however, is kicking butt at her new job as nurse. It seriously  is a full time job involving tons of planning and preparation. In the picture, you can see how intense our list making has been of late.

We're starting to get glimpses of what Lyla's 'likes" are. We constantly have a wide variety of music playing in the house, everything from latin reggae to Vivaldi, to The Muppets soundtrack, but of course her favorite is the fake computer music that comes out of her leap frog doll 'Violet'. She also loves the babbling brook white noise sound from her sleep sheep that we repeatedly turn on for her while sleeping.

And We Are Home!

  A day short of 8 weeks, we brought Lyla home from her long recovery of heart surgery. We are relieved that the doctors feel she is well enough to be at home and that we don't have to split our time between kids and each other! But we were also sent home with some new equipment, medicines, and concerns.
   Lyla was sent home on oxygen. She is on 1L and we feel comfortable with the equipment but wonder how long she will need it for. She is now going to be followed by a pulmonary doctor. Her lungs are a new concern and still have not completely cleared from all that went on at the hospital.
   We need to be followed up with Ears, Nose, Throat doctor to check on her vocal cord that damaged during intubation.
   We will continue to meet with GI and figure out what's best in how to feed Lyla and other GI concerns. GJ Tube is still an option for Lyla and could be more realistic if she is not gaining weight and continuing to spit up.
   Lyla is on two drugs that we will be in charge of weening; methadone and Ativan. We will do this one at a time and start with methadone. So far it's going ok, but it may be more difficult once we cut it down to once a day and smaller volume.
   Her feeds were set at 25 while in the hospital, but the dietician told us once we got home we could go as low as 20ml/hr. since she was having more spit up at 25 we decided to go down to 20ml and slowly work up. She has still been spitting up but not nearly as much. It is tricky with Lyla because it's hard to tell how much the spitting up is related to withdraw, how much it's related to upping her feeds, or how much it's just normal baby spit up! She is still on the special formula with low fats and will be for another week or two.
   She is taking 5 different medicines: Ativan, methadone, lasix, Pepcid, and ibuprofen. Multivitamin and vitamin D. Albuteral inhaler and QVAR inhaler. This means Lyla is getting something every three hours. Which means no sleep!
   On top of doctor appointments, we will be starting physical and speech therapy with Lyla. I am excited for these to begin and hope we can make up for lost time. Lyla has very low muscle tone, which means hardly any head control and her body is so floppy when holding her. Speech therapy will help her to eventually get to eating orally.

   She will also see an ophthalmologist in May and hopefully get some answers about her eyes.
   Overall things are going good at home. We've jumped right in to a routine and have her meds and feeding routine down. The kids are happy that Lyla is home and excited that mom is home all day too!

Will post some pictures later!

   

We Are Getting Close!

Feeds are at 25ml
Methadone ween still on hold.
Oxygen still at 1L. We are told she will be on oxygen at home.
Still having some spit up.
Antacids switched back.
Echo scheduled for tomorrow. If all looks good (no worse than previous one), we will be sent home!