So here’s how October went…
Look. We don’t get out much. So when Auntie Jo brought home a puzzle she found on clearance at Target, we were like, “Hey, cool, something to do all together after the baby goes to bed!” So we did it. And then we did another one. And another one. They were only taking us a couple of days, and I was just thinking we needed more of a challenge when I found a coupon code for a custom puzzle. I may or may not have put together a collage of baby pictures, and there is a distinct possibility that I thought it would be a good idea to order a 2000-piece puzzle. I don’t remember exactly what day we started, but the picture above was taken October 7, by which point we had made some significant progress. We did not finish in a couple of days. Auntie Jo and Mommy Mandy were relentless in their mockery of Mama Lisa’s brilliant 2000-piece idea. I’m just glad we finished in October.
A couple of months ago, a woman (AlisaMarie) posted on one of the special needs Facebook groups to share a project that she and her husband would be working on. They are planning to do a road trip across the United States and photograph families along the way who have kids with special needs. They will provide the families with (gorgeous) digital photos, and also use the photos to create a coffee table photo book telling the stories of the many children they meet along the way. They wanted to start with a few families before launching their KickStarter, and since they are based in Southern California for now, they were kind enough to include Leah in their pre-launch photo group. We love the pictures they took, and are keeping fingers crossed that they are able to fund their project. It sounds amazing. If you would like to help (or if you would like to participate as a family being photographed), please check out their web page, Project: A Road Less Traveled, as well as their Kickstarter campaign. The different levels of pledges include various benefits, including t-shirts and copies of the finished book.
Here are some of the photos that AlisaMarie took.
A little Etsy-type shop on Instagram offered to send LeahBug this adorable shirt in exchange for a photo they could share of her wearing it. AlisaMarie was kind enough to snap this on my camera so I could send it to them. This picture is exactly what I envisioned in my head, and she got it in one shot. I’m impressed.
October also marked Leah’s mommies’ 12-year anniversary together. We decided to squish her in celebration. Squiiiiiiiiiish. What did Mama and Mommy do on their anniversary? We went out for tamales at our traditional anniversary/celebration restaurant, and then went down to the 3rd St. Promenade to walk around and get dessert. Somehow we magically found ourselves in front of the Old Navy baby clothing clearance rack. I can’t imagine how that happened.
Leah has been making slow but definite progress in her oral feeding. She is still only getting small amounts therapeutically, but last month we started feeding her Gerber Puff crumbs by mouth, and now she is able to eat several whole puffs in a row!
What is October without a visit to a pumpkin patch? Initially we couldn’t find one nearby that was open and unlikely to be packed with people, so we went to an elementary school “harvest festival” instead. Still had some cute photo ops.
We decided to do our own little photo shoot with the pumpkins we bought from the harvest festival. We felt a little guilty having sat by the pumpkins for so long taking pictures, so we kinda had to buy a few. Of course I had to put LeahBug in the dress we bought for her on our anniversary.
So that’s October!
I posted my updates in September – you might remember that Leah was in the hospital for five days with an unidentified virus and that is why the doctors decided she needed her heart repair ASAP. You can refresh your memory here if you like.
I already blogged our August updates (here’s a little refresher but here are my favorite pictures. I’m trying so hard to catch up to the end of the year before, well, the end of the year. So I’m going to save current updates for after the photoblasts!
These next two pictures just bust me up.
Okay, that was our cat Lobo helping me cope with the cheekies.
We went to our dear friends’ wedding in August, and Ms. LeahBug was a flower baby. Unfortunately, she was a bit wilted during the ceremony. It was pretty hot out, and also it was only a couple of days later that she had a cold and a stoma infection. So I don’t think she was feeling very well. It was a gorgeous ceremony, though! How awesome is that dress?
…aaaand guess where we wound up later that week? I posted already about her GJ coming out. They also thought she might have a c-diff infection but thankfully her symptoms turned out to be side effects from her antibiotics. Why does she look so happy? This child.
SO delighted to be back in PT. Even now, all this kid wants to do is stand. Her desire to stand is so strong that it has actually motivated her to learn her first sign. I’ll try to capture this on video!
Whew! I seem to have updated every venue but the blog! Here’s the update we sent out to the GoFundMe site:
We are delighted to report that Leah had her heart repair on Wednesday, October 8 and came home the following day.
Once in the cath lab, Leah’s doctors discovered that the VSD was larger than initially anticipated. There was a great deal of blood flow through the hole in Leah’s heart, and she was in heart failure. They also found that they had a little Goldilocks on their hands – the device they had intended to use turned out to be too big, and the backup device they had ordered was too small! Thankfully, the third device they tried was juuuuust right. They ultimately used a “plug” intended for VSDs in a different part of the heart.
There is still some leakage around the plug, but already her enlarged heart appears to be a more normal size, and the doctor feels that the leakage has a good chance of closing up as the tissue in her heart grows around the plug.
One major complication that we are watching out for is the potential for blood clots, since they use major arteries for the catheterization. Leah’s right foot was quite cold in the hospital, indicating diminished circulation. We brought her back up to the doctor on Friday because we felt that while it had improved in the hospital, it was not improving at home, and had gotten a little colder than it was when we left the hospital. They did an ultrasound and thankfully it looks like there is no clotting right now, but they have put Leah on low-dose aspirin and will be watching her closely – we have another visit on Monday. We are very grateful that her doctors are attentive and responsive to our concerns.
Thank you all for your thoughts and prayers during this nerve-wracking week, and always!!
Today Leah’s doctors will try to fix her VSD using a method that is not typically used for this type of defect. They will use the blood vessels in her leg to send a catheter up to her heart and attempt to close the VSD with a device that is typically only used for different types of holes in the heart. There is a very real possibility this might not work, but the doctors want to try to see if they can help Leah avoid open-heart surgery. We are grateful for any and all positive thoughts and prayers today. Thank you!
There’s an article circulating the Internets right now called “How To Put a Toddler to Bed in 100 Easy Steps.” I first read it during one of the nights when Leah was particularly difficult to put to bed, and remember thinking that there really ought to be a “Non-verbal toddler with special needs” edition because oh man, that list is JUST THE BEGINNING. After another fun evening putting the BabyBug to bed, I’m thinking Leah’s 100 easy steps would go a little something like this:
1. Move pumps and monitors into bedroom.
2. Note look of concern and suspicion on toddler’s face.
3. Get together nighttime meds and feed.
4. Scoop toddler up and place on changing table.
5. Straighten out pulse oximeter sensor. Obtain nasal cannula.
6. Ruin at least three Tegaderms attempting to place nasal cannula.
7. Achieve epic cannula victory only to watch tape slide off on account of toddler’s tears.
8. Dry toddler’s face, retape cannula, turn on oxygen, and connect pulse oximeter sensor to machine.
9. Vent toddler’s stomach.
10. Nearly spill stomach contents when toddler kicks syringe.
11. Administer nighttime meds, clean g-tube site and run feeding pump.
12. Extract toes from toddler’s mouth and retape pulse oximeter sensor. Put a sock over it.
13. Change diaper and wash hands with wipes.
14. Peel toddler’s fingers off of g-tube button.
15. Obtain pajamas and trip over pulse oximeter cord in the process.
16. Breathe sigh of relief that it wasn’t the feed bag tube.
17. Wonder how you didn’t trip over feed bag tube.
18. Extract feed bag tube from toddler’s mouth.
19. Peel toddler’s fingers off of g-tube button.
20. Put pajamas on toddler.
21. Spend five minutes snapping pajamas and pulling wires through various holes.
22. Retape nasal cannula.
23. Remind toddler that feed bag tube is not licorice lace.
24. Observe toddler get very angry, then very cranky, and then poop.
25. Change poopy diaper.
26. Resnap pajamas one-handed.
27. Set toddler in crib using only your elbows and go wash poop off of your hands.
28. Return and retape nasal cannula.
29. Fix pajamas and tubes. Replace sock over pulse oximeter sensor.
30. Begin nebulizer treatment.
31. Remind toddler that nebulizer mask is not a lollipop.
32. Remind toddler that nebulizer mask is not a chew toy.
33. Realize the only way this will work is to place toddler on your chest and hold nebulizer against her.
34. Try to avoid inhaling breathing treatment yourself.
35. Feel lightheaded and wonder if it’s the medicine or the lack of oxygen from holding your breath.
36. Remind toddler that nebulizer mask is not a jai alai basket.
37. Remind self that toddler is nonverbal.
38. Continue to think of things that a nebulizer mask is not.
39. Read a book to toddler.
40. Notice toddler becoming drowsy.
41. Notice drowsy toddler becoming cranky.
42. Change Lasix diaper.
43. Read another book to toddler.
44. Notice toddler becoming drowsy.
45. Place toddler in crib.
46. Observe instant wail.
47. Pick toddler up.
48. Appreciate immediate silence.
49. Begin to place toddler in crib.
50. Observe instant wail.
51. Pick toddler up.
52. Appreciate immediate silence.
53. Pretend to lay toddler down in crib several times to achieve siren effect.
54. Rock toddler to sleep on shoulder.
55. Place sleeping toddler in crib.
56. Observe instant wail.
57. Rock toddler to sleep on shoulder.
58. Place toddler in crib.
59. Realize that the cannula has flipped out of toddler’s nose, and adjust it.
60. Hold your breath as toddler whines.
61. Breathe sigh of relief as toddler falls back asleep.
62. Leave room and observe toddler on monitor.
63. Begin doing something entertaining.
64. Hear toddler gagging and retching on monitor.
65. Vent toddler.
66. Spill stomach contents as sleeping toddler kicks syringe.
67. Obtain new pajamas.
68. Trip over at least 2 cords in the process.
69. Change Lasix diaper.
70. Dress toddler in new pajamas.
71. Spend five minutes snapping pajamas and pulling wires through various holes.
72. Look up and observe toddler staring at you.
73. Brace yourself for the instant wail.
74. Pat wailing toddler until noise subsides.
75. Observe wide-awake toddler.
76. Offer rattling toy.
77. Watch rattling toy fly across crib.
78. Offer glowing musical toy.
79. Express relief that toddler is easily distracted by things that glow.
80. Tiptoe out of room and watch toddler on monitor.
81. Breathe sigh of relief that toddler appears to be entertaining self, at least.
82. Begin doing something entertaining.
83. Get lost in concentration.
84. Become startled by loud beeping.
85. Remember that toddler is easily distracted by things that glow.
86. Refasten pulse oximeter and replace sock.
87. Tiptoe out of room and watch toddler fall asleep on monitor.
88. Go to sleep.
89. Become awakened 15 minutes later by whining.
90. Extract toddler from tangle of wires and change Lasix diaper.
91. Rock toddler to sleep on shoulder, place in crib, return to sleep.
92. Wake up to fix beeping feed pump error. Go back to sleep.
93. Wake up to beeping feed pump error. Beg spouse to get this one.
94. Wake up to fix beeping feed pump error. Return and collapse onto bed.
95. Get up to fix beeping feed pump error that started midair as you fell back into bed.
96. Wonder why feed pump hates you and what you did to make it angry.
97. Go back to sleep.
98. Wake up to pulse oximeter alarm and retape nasal cannula.
99. Lovingly watch precious child sleep for several minutes before returning to bed. Sleep through the remainder of the night.
100. Pretend to be asleep for the first beep or whine of the morning so spouse will get up.
[Edit: I realize I’ve left out a few steps, mostly involving Cat #1, who soars over the cat gate in Leah’s doorway and has to be let out at least three times during the course of this routine because he can’t get back out, and Cat #2, who uninstalls the cat gate entirely and has to be nudged out of the room like a soccer ball. So we’re basically playing Whack-a-Kitty through this whole routine.]
[Edit #2: And I’ve failed to include the multiple steps throughout the evening/morning that consist of these instructions: “Watch monitor. Make sure toddler is still breathing.”]
[Edit #3: I mean, basically you’d need another 100 easy steps for all the other stuff that didn’t make it into this list… and just wait ’til you see the “How To Prep For Your Toddler’s Day: Special Needs Edition” list. Just kidding. That would be a really long list, and not nearly as entertaining.]
Behold, the month of July, in pictures! I’ve already told most of the story in previous posts, so I’ll just refresh your memory here and not get into details. But first…
Okay, now July, for real.
It helps her balance.
It’s like that mirror scene with Lucy and Harpo Marx in “I Love Lucy,” right? These two are too cute together.
Aaaaaand here we are again. Baby Jail. They planned to put a GJ in on July 17 but she was getting dehydrated and not keeping anything down, so they admitted her the night before the procedure to get some fluids into her.
Where’s the baby?
We left the hospital July 18th, and then on Saturday the 19th we went to a “new parent picnic” for families whose babies with Down Syndrome were born in the last couple of years. I already posted pictures from this event. They were too cute to wait.
We were all set to go home that Monday night when surgery ordered a CT scan just to check on the fuzzy area in her lung. And then we didn’t go home. The omentum (fatty outer covering of the intestine) had migrated into her chest cavity by forcing its way through a couple of sutures in the diaphragmatic hernia repair. They decided to repair it and do a Nissen fundoplication while she was already admitted.
Some counterbalance for all the Smily Baby photos. A lot of people have said she is always smiling, and it’s true that Leah is a very happy baby… but let’s face it – she’s still a baby. And luckily for her, she’s still heartbreakingly adorable when she is mad, too. So I had to post this to her Facebook just to offer proof that she does in fact turn that smile upside-down on occasion.
And NO, she is definitely not sleepy:
Every time I plan a long photoblast it turns into an update that we’re in the hospital! The title pretty much says it all, but I might as well get all this down for future reference.
Last Sunday night (the 7th) to Monday morning, we had quite a miserable time overnight. Leah was up very frequently gagging and groaning and crying, and in the very early morning had a fever of 103.4. She also had four little red specks on her leg. We decided to take her up to urgent care. Of course, by the time we were at the doctor’s office Leah was in a delightful mood, clapping her hands and beaming at the doctor.
He concluded that she likely had a viral infection, but that she looked good and we should just keep an eye on her and bring her back if she got worse. I pushed back at him a little bit since Leah tends to surprise us with funny things that aren’t your run-of-the-mill virus, but he seemed pretty confident that was the problem. Still, by the time we left the elevator and stepped into the lobby, he had called me back and recommended that we get a chest x-ray just in case. We had another rough night on Monday, and I actually wound up sleeping in the recliner in Leah’s room for a good portion of the night because it seemed pointless to leave the room when I would have to come right back in next time she woke up. She finally fell asleep around 2AM.
Tuesday morning the doctor called us back to let us know that the chest x-ray wasn’t conclusive for pneumonia, but her lungs looked unhappy enough that they wanted to treat for pneumonia just in case. Okay, he didn’t say unhappy – but I can’t remember the term he used.
So Leah had her antibiotics, and gradually improved throughout the week. We kept her home from therapy on Tuesday and Wednesday because of her continued fevers, but by Wednesday and Thursday we were starting to see more improvement (and get more sleep). On Friday night everything just sort of went to the birds. We had friends over for dinner and had an absolutely lovely visit, and Leah even went to sleep relatively on-time. Then around midnight she woke up fussing and gagging. This continued all night, and early Saturday morning she spiked a fever of 102.6. By about 5AM we noticed that she was breathing pretty fast, and by 6AM she was practically panting in her sleep. Based on what we’ve seen in the past we didn’t feel like we needed to get an ambulance, but we definitely needed to get her to a doctor Saturday morning. So that’s what we did. We got an early appointment and they admitted her from the pediatric urgent care clinic – but not before making us shlep all over Sunset Blvd to get labs and x-rays done. We still don’t understand why they didn’t just admit her first and then do testing – they weren’t going to send her home with the way she had been breathing.
The nurse at the peds clinic scared us for a minute. He came out and was so somber and told us that she was going to be admitted and that the doctor would be speaking with us soon. We asked him if the labs showed anything and he said the doctor would speak with us. So naturally we started worrying immediately. Our big concern at that point was this enterovirus that has been going around. But then we asked him again if he could tell us what the labs showed and he said something about low red blood cell count, and at the same time I got an email showing that she had high white cell counts. And the nurse was so somber. So we started getting a little antsy and worrying that maybe we should be worrying about leukemia. The L word sort of lurks in the back of the brain for parents whose kids have Down Syndrome since it’s more likely to show up in our kids than in typical kids. And he seemed so solemn! But then we also considered that he is used to breaking the news of hospital admission to families that haven’t spent months on end in the hospital, so perhaps he was being solemn for that reason. So we tried not to worry too much, and thankfully what worry we did worry seems to be for naught. Leah is anemic – very anemic. The working hypothesis seems to be that Leah caught a virus or something, and that it may or may not have developed into pneumonia (they are treating her for it out of precaution), and that her anemia has probably developing for some time and isn’t necessarily the cause of her shortness of breath but certainly isn’t helping. From Saturday morning to last night, Leah was requiring daytime oxygen; she was desatting to about 89-92% without it. She was satting as low as 84% while sleeping, and that’s with her old O2 level of .25L. As of today she’s back to her usual O2 regimen, except that when we take her home we will need to keep her on O2 while she naps and while she sleeps instead of just overnight.
But wait – there’s more. Leah has a lot of congestion in her lungs, and the doctors doubled her Lasix to ward off heart failure. Her cardiologist came in yesterday and advised us that he now recommends that Leah’s heart be repaired next month instead of waiting until she is 4 or 5 year old. His previous recommendation was to wait because there was no indication that we needed to do anything immediately. But at this point he feels Leah is just going to keep bouncing back into the hospital with respiratory infections all winter and that is going to be hard on her lungs. It will be safer for her to go into this cold and flu season with a repaired heart. So we spent the night contemplating open-heart surgery.
Today, the pediatric cardiac interventionist came in to discuss the possibility of repairing Leah’s VSD via cardiac catheterization. It’s a procedure that is done pretty consistently for PDA repairs and for ASD repairs, but typically not for the VSDs. But this is the way of the future, apparently – they are developing ways for more and more of these procedures to be done by less-invasive means. If we go ahead with this procedure it will take place in only a few weeks. So Leah is getting a blood transfusion tonight to boost her iron levels since she wouldn’t have enough time to replenish her blood count and iron levels between now and the future procedure with just iron supplements.
So we have a big decision to make. Go with the far more dangerous procedure that WILL be a total fix – assuming Leah actually pulls through open-heart surgery? Or go with the far less dangerous procedure that still has risks and may or may not fix the leak (again, assuming Leah pulls through), but is far, far less risky and has a significantly better recovery time? Letting Leah go through this winter without a repair is a pretty risky proposition as well. So. That’s where we are right now.