How To Put a Toddler to Bed in 100 Easy Steps: Special Needs Edition.

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 lie 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.

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[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.]

NOW for the photos…

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…

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Mama Lisa was so pleased that Sarah McLachlan answered our very important question during her “Live Tweet” Q&A event.

Okay, now July, for real.

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Nobody likes getting up this early for a dilation…

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…but sometimes we just have to resolve ourselves to the fact that doctors like mornings.

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Leah was SO red after her procedure. They ultimately decided to keep her overnight for observation.

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Sweet face

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Independence Day in Baby Jail!

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“They say I’m going home soon!”

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“I’ll believe it when I see it.”

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“Maybe Emo Pony Face will help?”

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Home at last, and using our time wisely – resting up for a night at the beach!

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“This is so much better than Baby Jail!!!”

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We are super-redwhiteandblue today!

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All cool in our warm denim jacket.

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“LOOK MAMA! WHEN I STICK MY TONGUE OUT I CAN STAND!”

It helps her balance.

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’nuff said.

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Another day, another fashion statement.

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Our friend Ry Ry gave us his old jumper because he’s too big for it now! With a few layers of foam mats underneath our feet juuuuuuust rest flat on the ground. We LOVE this jumper. LOVE. IT.

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Just for the cute of it.

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It’s like that mirror scene with Lucy and Harpo Marx in “I Love Lucy,” right? These two are too cute together.

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Something off-camera is both fascinating and hilarious.

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Our first piggies.

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Our second piggies. Aunti Staci does them so much better…. too bad these came out and I had to redo them, leading to the third set of piggietails in two days.

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“Mama, look at these piggietails! I can’t be seen in public like this! I just can’t!”

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“Just kidding. I love your piggietails.”

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“They’re almost as tasty as this tubie.”

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Apparently the third time was the charm. This picture only got 1.4 MILLION likes on Facebook. I am not even kidding. LeahBug’s piggietails went viral!!!

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Are you kidding me with this?

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No kidding needed. They really are that cute.

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Sillie selfies at Mommy’s birthday party.

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A rock star in the making.

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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.

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Smily baby.

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Smily baby.

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No, but seriously – smily baby.

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Smooshy baby.

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.

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But by July 20th we were back in Baby Jail.

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Working on our muscles by doing baby push-ups!

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Treadmill Mommy

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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.

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Mr. Puppy keeps us company at the hospital.

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Sometimes we try to grab his nose but usually we aim for his feet.

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Just because.

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Did somebody ask for Smily Baby?

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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.

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Baby sammich, a.k.a. gastric emptying study.

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Surgery day, post-recovery – you can tell by the OR tan.

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Always with the cables.

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After a few days she was feeling a little bit more lively.

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Ducky was by her side throughout the ordeal.

And NO, she is definitely not sleepy:

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Ducky and Pony

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Pleased to be on the road to HOME.

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This one is definitely getting saved in the “Babymoticons” folder.

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“MINE.”

Back in the saddle again – if by saddle you mean baby jail

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.

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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.

Also, this:

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Deep thoughts on a Wednesday

With the Down Syndrome community in the midst of a Twittertwister over recent comments by biologist Richard Dawkins, I guess it would be remiss of me to not make a comment on it. A few days ago this guy (apparently a well-known scientist?) tweeted, in response to somebody saying they didn’t know what they would do if they had a prenatal diagnosis, “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” His later apology only made things worse. Two gems: First, “what I was saying simply follows logically from the ordinary pro-choice stance that most of us, I presume, espouse.” And then, “If your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down’s baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare.”

I want to step aside from this for a second and talk about Leah. I’ve hoped over the past year that Leah has shaped people’s thoughts about Down Syndrome the way she has shaped ours. My hope has been that if one of our friends or community members got a prenatal diagnosis of Down Syndrome that they would remember Leah when deciding whether to proceed with the pregnancy or terminate. But then I had a horrible thought – what if all they think of is how hard it has been for us? So I want to take a moment and clarify that 1) we have not regretted keeping Leah for a single moment, and 2) most of Leah’s medical problems have been about a) her premature birth, and b) her long-gap esophageal atresia, which was the reason for the premature birth in the first place. Our experience is quite typical for a family whose child has long-gap EA, but is not typical for a family whose child has Down Syndrome. And as we have discussed before, the odds of Leah’s type of esophageal atresia occurring together with Down Syndrome are one in a million.

So please, if you ever find yourselves making a decision about what to do with a prenatal diagnosis of Down Syndrome and find yourself thinking about our experience with Leah… please think about those sassy little pigtails and the proud smile on her face when she reaches a new milestone. Think about her giggles and the look on her face when we go through the car wash (oh boy, just wait for that one). I’m not telling you what to decide, because every family needs to make the decision that is right for them – just please don’t let our story influence your decision negatively!!

Now back to the substance of what this gentleman said. If you don’t like political or philosophical discussion this is the point at which to stop reading this post. SO, here we go:

I strongly disagree with the notion that a pro-choice stance automatically results in a pro-termination stance upon receipt of a pre-natal T21 diagnosis. Pro-choice means PRO-CHOICE. It means you support a woman’s right to choose what happens to her own body. I think there are actually different ethical considerations when you’re dealing with an unwanted pregnancy vs. a wanted pregnancy. With an unwanted pregnancy the moral issue is whether it is acceptable to force a woman to go through pregnancy if she doesn’t want to. But once you’re dealing with a wanted pregnancy, the choice is no longer about the woman’s right to her body – because she has already made that choice. It becomes instead a decision about what the woman (and partner, if applicable) feels is best for her child. Parents have had to make heartbreaking choices about terminating pregnancies in which the fetuses were simply not viable or would have had little to no chance of survival. It’s a crushing loss and it’s unfair to put a political spin on what these parents have been through. Personally I think you’re treading a thinner line when you are dealing with diagnoses in which a child can lead a happy and fulfilling life. But then again, who defines “fulfilling,” and is there a requirement for how long that life has to be? I mean – does one terminate for Trisomy 13 or 18? For Tay Sachs? Most children with T13 and T18 don’t live past a year, though some live into adulthood, and Tay Sachs gives a few years at most, the end of which involve some major deterioration. That’s a lot of suffering. And then what about Down Syndrome? Cystic fibrosis? A missing limb? Cleft lip? How about if it’s a girl and you wanted a boy? Where do you draw the line, or is there a line at all? I’m not asking what people should be allowed to do – just what they might consider when making these decisions. Raising a child with a disability is a big commitment. It is. You can’t do it half-heartedly and you have to know that it will change your life’s course. But that is also true if I take out the words “with a disability.” I like to hope that expectant parents who don’t feel prepared to raise a child with, say, Down Syndrome or CF would be willing to let the child be raised by others who feel differently, but in the end, it’s their choice.

Now, here’s where we get to the really cloudy ethical area – what is the doctor’s role in all of this? There are two big issues that I see coming up over and over again: poor and outdated information, and pressure to terminate. They often go hand in hand.

First, parents are often given an extremely bleak picture of the life of a person with Down Syndrome, and I believe that providing decades-old information is actually robbing women of their freedom of choice. Imagine that you’re told your child will lead a miserable and painful life and die in infancy or early childhood, and if they survive childhood they will never be able to learn very much or work and will probably get dementia and die in their 20’s. Now imagine you’re told instead that your child will always need some degree of support and will be more prone to some serious health issues, and it will mean a lot of hard work and patience on your part, but with early interventions and a good support system the child can lead a happy life and have friends and be beloved by their communities, and possibly even have a job or get married when they’re older. Might these two offerings lead to different decisions on the parents’ part? Maybe, and maybe not – but how can we know until doctors provide more accurate and holistic information?

Back in the 80’s, there was a child born with Down Syndrome and esophageal atresia, just like Leah. The doctors could have given the child a g-tube for feeding and then repaired the EA/TEF (it sounds like this child had the more common Type C), but instead they told the parents that the child would have a miserable life and would only suffer, and that the humane thing would be to let the baby starve to death. The parents trusted the doctors and agreed to let their baby boy starve to death. This case went to the state’s Supreme Court because there were several families that were willing to take the child in and make sure he got medical treatment, but the parents refused to allow this because they truly believed they were doing what was best for their child by letting him die, and the court agreed that it was the parents’ decision. This child was JUST LIKE LEAH. And they let him starve to death by withholding medical treatment. I realize this is a different issue because the child had already been born, but still – parents going through the crisis of learning of an unexpected diagnosis are in a vulnerable state, and doctors need to give trustworthy and current information about what that diagnosis means. Then, and only then, can the expectant parents make an informed decision about how they want to proceed.

Second, I have heard from a LOT of women that their doctors pressured them to terminate their pregnancies even after they declined abortion. Dear doctors: The freedom of choice is about the FREEDOM to CHOOSE. And if a woman CHOOSES to proceed with a pregnancy after a prenatal diagnosis, NOD YOUR HEAD AND MOVE ON. She’s made her choice. Focus on keeping mother and baby healthy and safe and preparing for appropriate medical interventions after delivery.

We feel very lucky that we did not get pressure like that with our OB/GYN providers. We had already made our choice, but it would have been very stressful to have to argue with doctors when we were already going through a tough time (especially with the suspicion of EA). What did happen is that once we had confirmation that our baby had Down Syndrome, we met with the geneticist and were handed a copy of Babies with Down Syndrome. That is the proper reading material in this situation – not some 30 year old pamphlet with little to no information about early intervention. Then we were directed to the high-risk OB for further consult and a more detailed anatomy scan. And that high-risk OB did not mention or suggest termination even once. He treated us like any other couple concerned about the health of their child-to-be, made the proper arrangements for us to deliver at the hospital where the pediatric surgeons were located, and arranged for us to meet with the surgeons – a meeting which of course never happened because Ms. LeahBug decided she was ready for the world 8 weeks early. :-)

I know it’s not going to get any easier for us as Leah gets older and her developmental delays get more pronounced. And things haven’t exactly been easy thus far (though largely because of the medical issues). But Leah is the sweetest, most precious little girl, and I can’t imagine our lives without her. She chose us, and we chose her back.

Can’t seem to stay away

We had another little visit to the hospital last week when Ms. Bug’s GJ tube pulled out. Earlier in the week we had begun the process of transitioning her back to g-tube feeding; we got a second pump and were gradually reducing the j feed and adding to the g feed. On Thursday the GJ came out, and Mommy and Gran put in the regular g-tube and drove Leah up to the hospital (Mama was away all day), where she was admitted in peds. The initial plan was for the GI on call (who knows Leah well and has done some of her dilations) to reinsert the GJ tube Thursday night, but Leah’s primary GI decided this would be a good chance to see whether Leah could tolerate full g-tube feeds. We stayed at the hospital for observation and increased Leah’s g-tube feed 5cc every three hours until she was at full continuous feed. And now she is back to the g-tube! Hurrah!

I think I mentioned previously that Leah caught a little cold last weekend. The good news is that she doesn’t seem to have pneumonia yet. The bad news is that the cold is thickening her secretions and making her gagging and retching much worse. She also developed a bit of an infection in her g-tube stoma, probably around one of the sutures, and the docs put her on antibiotics. On Wednesday night, we had what we might call an epic poopsplosion that reset the scales for epic poopsplosions. Leah was in her jumperoo and Mandy glanced over and noticed that she was awwwwwfully happy. Why was the baby so happy? Well, the antibiotics had caused a giant poopsplosion that had leaked out of her diaper and onto the floor, and Ms. Bug was kicking her feet around in it and having So. Much. Fun. We did not have so much fun cleaning it up, but we were still laughing pretty hysterically through the whole ordeal. Ms. Leah went straight to the bath.

SO – when we got to the hospital on Thursday, we let them know of this incident and they decided they wanted a stool sample since they continued to be loose on Thursday. They sent us home Friday, but on Saturday they called us back to tell us that the sample tested positive for c-diff. Oh boy. We have had a pretty confusing couple of days. They said it wasn’t clear whether she had an actual infection or was just colonized, as many hospital frequent fliers are. I left it up to the GI on call to decide whether or not to treat, and he said she should go forward with the specific antibiotics that kill this bacteria. But her regular GI called me yesterday and told us to stop the antibiotics – he did not feel it was appropriate to treat it at this time because it didn’t sound like a full-blown infection. I guess this strain is particularly resistant to antibiotics, so when you go on antibiotics, the good bacteria get killed and this one can get stronger and take over, causing infection and lots and lots of icky poopsplosions. But the antibiotic can itself cause the same reaction, and that’s what the GI thinks is happening. So he wants to wait a couple of days and see if it clears up on its own before attacking her body with 14 days of strong 4x-a-day antibiotics.

In brighter news, we have started mixing Liquid Hope into Leah’s breast milk feeds. This was a compromise with the doctors because it is very difficult to do blended feeds with a j-tube, and this formula is made completely of whole organic foods. She seems to be tolerating it well! We actually won a case of it in a Facebook drawing by the manufacturer, which is super-awesome and helps us out a lot. The best news is that they are coming out with a pediatric formula, which means we would actually be able to feed it to her without diluting it. Right now there is too much protein so we can only give her a small amount each day. At some point soon we are going to transition her to a fully blended diet, but it will still be nice to have the Liquid Hope pediatric formula when we are out and about and the logistics don’t allow for a blended feed.

I’m working on the next round of photos (LOL – the month of July), but in the mean time, here’s an exciting video. :-)

An actual update

Since we last wrote…

Leah got out of the hospital on July 29. I’m pretty sure my favorite non-Buggy moment in the hospital was from when the GI was in the room talking with me about options going forward. Remember how I said the stuff Leah was spitting up was absolutely foul? The doctors didn’t seem to grasp just how vile it was and I kept trying to find the most descriptive words possible but it didn’t seem to be getting through. At some point the GI doc was concerned that there might be milk in the tube and offhandedly said to the nurse, “Is it milk? Smell it.” AND SHE SAID NO. HAHAHA. I don’t remember which one of us invited him to smell it himself but he did, and he maintained an impressive poker face. Absolutely classic. I would have said no too! She knew what it smelled like. We all did. It was awful! Why put yourself through that deliberately? I was seriously still replaying the scene and giggling to myself for days. “Smell it.” “No!” I’m smiling as I type the story. I hope at least one of you finds the humor in this situation. I swear it wasn’t hospital delirium.

This was my other favorite moment:

SO – yes, Leah came home July 29. She continued to spew yuckies for maybe a week, and then it seemed to be tapering down – but then it got bad again. At this point she doesn’t even always bring something up – just chokes and gags and retches. It’s so frustrating to watch, and I remember how it feels to throw up multiple times every day. It’s exhausting. Exhausting is not even a strong enough word. This kid goes through so much.

On the bright side, here are some exciting things LeahBug has done since she got out of the hospital, in chronological order:

-Sent postcards to Cool Aunti Staci at camp.

-Learned to bang objects together – yay!!!

-Is consistently bearing weight on her feet when we hold her hands! She gets the “LOOK WHAT I’M DOING! I’M SO PROUD OF ME!” face and laughs, just like she did when she learned to sit. It’s so precious you can’t help but laugh with her.

-Listened to her Cool Auntie Erin’s band’s EP in the car.

-Wished a happy birthday to a couple of SuperBaby friends and a “welcome to the world” to a SuperBaby friend who finally busted out of the hospital for the first time since his birth 10 months ago.

-FaceTimed with her six-year-old second cousin for the first time.

-Had a play date with her best friendcousin at the Farmer’s Market.

-Started getting a blended-food formula through her j-tube in addition to her breast milk.

-Went to the Griffith Observatory and slept through the planetarium movie.

-Danced to the new Jason Mraz and Raining Jane album.

-Attended her very first birthday party for kids.

-Served as a Flower Baby in the beautiful wedding of some dear friends to whom Leah led us just before she was born.

-Became a toddler.

-Caught a cold.

That pretty much catches us up to today, which was another long day up at the hospital complex for doctor visits. In addition to what appears to be a cold, Leah also seems to have a bit of an infection of some sort at her g-tube site. They are putting her on antibiotics, which of course turned out to be a variety that can’t be fed through the g-tube, which we didn’t know until we got home. Tomorrow will involve some phone calls… Leah is also getting a second feeding pump and we are going to make an attempt to transition her gradually from j feeds to g feeds. Wish us luck – getting Leah back on g-tube feeds will put us back on the right track moving forward.

Re: toddlerhood… up to this point Leah has generally only really cried when something was physically uncomfortable or painful. But I’m pretty sure that she realized the effectiveness of The Wail while in the hospital, and now we are getting that whenever she gets upset about anything. She is still a very cheerful baby, but in addition to The Wails she has also been whining for long stretches each day. It’s very frustrating because it’s clear she isn’t comfortable but we don’t know what to do for her – mostly it seems like she is a) hot because of the weather and we do what we can to mitigate that, or b) tired and yet adamantly refusing to nap (see video above for a highly-subdued version). The latter is where she has really entered into the realm of toddlerhood, and it contributes to the former because she works herself up into fevers from crying.

In brighter news, would you believe her viral picture reached 1.4 million “likes”? It seems to be tapering off now.

More pictures coming soon.

Probably the most overdue photoblast ever.

These are super late, but I owe you all pictures while I’m busy catching you up. Remember when I had time to blog every day? I guess I should be grateful – pretty sure that only ever happened in the hospital. These pictures bring us up through the end of June.

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Deep Thoughts by Leah Buggy.

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Buggy the Vampire Slayer

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“What is it?” asked the dog.

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Mommy made a hat!

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Baby ate a hat!

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“Here, let me hold that knot for you.”

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Pony Face

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Just some light reading for the weekend.

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Celebrating Father’s Day with Grandpa and Great-Grandpa!

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Great Grandpa!

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“ET PHONE HOME, Grandpa Bill!”

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Lobo tempting fate again.

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Mmmm, carrots! (Clearly before her last surgery)

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Silly selfies with Mama

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Mama loves the BabyBug, Baby loves the MamaBug

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Dilation day! “I’m so hungry – if I could just eat this chin, please…”

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Leah’s buddy Wesley decided to wear his LeahBug shirt that day. He and Leah must be on the same page – he didn’t even know she had a dilation scheduled!

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Hospital gown for breakfast!

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“Mr. Ducky, I have to have another dilation today.”

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“Maybe you could be my breakfast?”

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“Oh dear.”

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“Well shucks. If I can’t sleep, I might as well nap.”

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A bird’s-eye view of said nap.

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Wakey wakey!

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I just love this face. Don’t care if the pic is blurry.

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Her very favorite sleeping position

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Taking the whole “navel gazing” concept literally

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Geeeeentle with the kitty!

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Presh.

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A first! Swimmy time!

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We like it!

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We did not particularly enjoy the part where Mommy dipped our hair underwater. That was not cool. It was COLD.

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But it’s okay. Water is fun, because…

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…water has duckies.

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BabyBug doesn’t get to play outside every day, but when she does, she makes sure to enjoy a nice nap in the grass.

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Baby pushups

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For our 7-year wedding anniversary we took BuggyBug to the beach. It wasn’t her first trip but it was the first time we actually sat down and watched the waves. She loved it!

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She was not, on the other hand, particularly impressed with her bib.

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WHEEEEEE! We are silly!

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Cool Baby is cool.

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Family selfie

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I know it’s blurry but I just love this sheer joy.

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I wish I could tell you what was so funny but I have the oddest feeling it was my face.

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Caption, please.

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Come on. Just come on.

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Working hard in PT

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More JOY

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“Still wondering where my service pony is…”

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“… But it’s okay. I can wait.”

Baby jail a week later

Leah had the gastric emptying study on Thursday morning. She spewed almost immediately after they injected the milk into her tummy – but to be fair, she hadn’t had anything in her tummy in over a week and they put 30cc in all at once. That doesn’t even happen with her g-tube feeds. The gastric emptying study came out relatively normal – technically a very, very mild delay, but functionally normal. So no pyloromyotomy.

Surgery was Friday. Not a lot to say there – they did the Nissen and fixed the hiatal hernia repair, and also confirmed that a large segment of the omentum had forced its way into the chest cavity through a tiny hole. They were surprised at how much had managed to get through this tiny hole, but it did, and now it’s back where it belongs.

Friday and Saturday were largely days of rest and drugs. Yesterday Leah spent a little bit more time awake, and managed to get through the whole day without morphine – very exciting. Today was not such a fun day. At 4:30AM Leah woke up wailing and wound up vomiting. Vomiting?! It was wretched and horrible, too – like liquid morning breath. Gross. (I’ve come up with many adjectives today – abysmal, vile, foul, etc. Worse than a diaper.) Poor child – that can’t be very pleasant for her. That happened six more times today, including one episode that lasted a couple of minutes and included some scary little eye rolls and shaking. It appears that her secretions are pooling in the bottom of her esophagus since everything is still pretty swollen around the fundoplication. When it can’t pool anymore, it comes up!

The docs were also a little concerned that they seemed to be seeing milk in the g-tube when it was venting, so they did an x-ray. I swear, this kid is going to glow in the dark by the time she’s a teenager. The x-ray was fine, except that she is pretty backed up from several days of being given morphine and other meds and not really being fed. Her little bowels are just not really awake and moving. So we’re working on that.

Leah has also gotten in the habit of WAILING when something happens that displeases her – and I’m not sure whether it’s out of pain or annoyance, but either way, it’s heartbreaking. OT came in today to work with her a little bit and she was able to sit with some support from the Boppy, but when the OT went to lay her back down, it was like a siren going off – WAAAAAAAAAAAIL. So we let her stay in the Boppy after the OT left. About 15 minutes later, I noticed that she was starting to drift off – several times her eyes fluttered shut until she tipped forward or backward or just shook herself awake. “I’m not tired, I swzzzzzzzzzzzzzzzzzzzzz.” The minute she was lying down she was OUT COLD.

At present, Leah is basically glued to Mandy’s shoulder, and is wailing every time any attempt is made to put her down. She actually got her breathing treatment over Mandy’s shoulder.

We HOPE tomorrow is the day, but I’m just not going to say the H word right now.

Back in Baby Jail!

My next post was supposed to be a photo blast, but there’s a funny story about how we went home from the hospital Friday night and then came back Sunday evening… good times.

So. On Friday (I think – maybe it was Thursday. It all blends) they did a chest x-ray and an echo. The heart looks okay, although for the first time her cardiologist said he is thinking this might be a VSD that requires repair. If it hasn’t gotten smaller by the time she is about 4, they will probably repair it. The chest x-rays keep showing this mysterious spot on Leah’s right side, but the surgeons seemed pretty sure it was residual from her hernia repair. On Friday they started Leah on erythromycin to see if that would help her stomach empty enough so that she wouldn’t keep retching and vomiting stomach contents. It worked for a while, and they sent us home Friday late afternoon / early evening. Of course she spewed as soon as we got in the car! But we had been told that could continue for a little while, so we headed home. On Saturday our friends came over in the morning for a visit with the Bug, and then Leah and Mommies went to a picnic for new parents of babies with Down Syndrome. We went last year too, but this time we got to bring LeahBug with us! Leah’s two friends from the Baby Party back in March were also there, so they hung out together and people kept asking if they were triplets. It was pretty cute.

BUT all through this very fun day, Leah was still retching, and she didn’t really keep down her meds on Friday night or Saturday morning, so we got on the phone with her primary doctor ASAP. I tried very hard to reach her GI since he had instructed us to have him paged if we had problems, but the nurses are pretty staunch gatekeepers, and even when I tried to call back on Sunday, I was informed that if the doctor really wanted me to be able to reach him then he would have given us his direct number. Um. I don’t think so. I kept calling and pushing and they finally paged him, and I got about 30 seconds into the call with him before he said she needed to come back. The concern was that she wasn’t getting her cardiac meds and that’s not okay. So they admitted Leah again on Sunday night.

On Monday, once it was established that all of Leah’s cardiac-related blood labs looked good, the GI said her meds could go into the J-port on the GJ tube. Cardio did an echo just to  They wanted to keep her long enough to make sure she was tolerating the meds through the J and then we could go home, but we would need to have a follow-up with her other GI in clinic on Tuesday. At some point during the day surgery decided they wanted to get a CT before Leah went home – they were going to order an outpatient CT to check on the mysterious spot over Leah’s right lung, but figured since she was inpatient they might as well just get it done. The CT was scheduled for 6PM, and at that point we figured if we were going to have to go to the clinic the following day we might as well just resolve ourselves to staying over for one more night. It’s a good thing we didn’t plan for discharge – the CT wound up not happening until close to 11PM. Leah was so tired she forgot to be cranky, and just sort of looked around with bleary eyes and little delirious smiles.

By morning, the plan was no longer for a Tuesday discharge. The CT showed that some of the omentum (the fatty layer that covers the intestine) was starting to poke up through the mesh on the hernia repair. You can imagine how surgery does not like the idea of repairing this Morgagni hernia over and over and over again. Their plan as of last week was that Leah would keep the GJ in for a few months to keep down her food and get a little bigger, and then once they were certain the stricture was completely resolved, she would have the Nissen fundoplication to help control her reflux. But they think that all of this gagging and retching may be putting strain on the hernia repair and not letting it heal. So Leah will finally be getting the Nissen on Friday. She will be having a motility study done tomorrow and if her gastric emptying is severely delayed, she will also have a pyloromyotomy – the same surgery that Mama had last summer.

Odds are we will be in the hospital until early next week. (And I would like to point out for the creeper Internet’s sake that other people live in our house besides us, so don’t think it’s unattended.)

In more uplifting news, Leah is getting extraordinarily bored in her crib, so we took her out in the Peds wagon for the first time and she LOVED IT. She kept rocking back and forth to make it go faster like she does with her PT swing. She will be thrilled to learn that she has a wagon waiting for her at home that she just hadn’t been Big-Girl enough to play with yet (thanks again, Candy and David!!!). She also saw one of her old therapy dog friends in the hall – the collie who wore the Dodgers uniform at Halloween last year.

Oh – and that picture that went viral is now at 698,000 likes.

Still working on pictures, but here are a few to keep you busy:

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Baby Party II

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Their faces don’t look anything alike, but they are all roughly the same size and have about the same hair color, so people kept asking if they were triplets!

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Deep conversation.

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How cute is this bow?

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“Fan me with palm fronds.”

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“Giddyup Mama!”

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“DOGGIE!!!”

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“Teehee. It’s a doggie.”

Here we are again!

So apparently I haven’t posted since the last time Leah was in the hospital? Yikes! I have a picture post in progress but I guess I’ve been working on it longer than I thought.

So. Leah had a dilation this morning. Or rather, Leah had an endoscopy this morning. They didn’t have to dilate!!! Her esophagus is a uniform width at this point, which is So Awesome and Exciting.

Now for the less-exciting part. Leah’s vomiting and retching have both gotten worse since the last dilation, and they were already pretty bad going in, which is probably why she wouldn’t hold anything down in the hours immediately following the procedure last time. Her doctor proposed putting in a GJ tube at her next procedure and we have been agonizing over this decision for a good week now. But on Monday Leah didn’t keep down a SINGLE FEED, and at that point we concluded that something had to be done ASAP. We took her to urgent care on Monday evening just to check on her hydration, and then met with GI and surgery on Tuesday. We agreed to go ahead with the GJ as a temporary fix to allow Leah to get her calories and fluids. The plan was that she would come in Thursday AM as usual, but on Wednesday she was still retching and vomiting and looked exhausted. Her little fontanelle was sunken and she was tired all through therapy. We decided to call her GI and see if he felt it might be worthwhile to admit her overnight to hydrate her before her procedure. That is exactly what happened, and so here we are – Leah’s almost-dilation went great, and the GJ is in. The not-so-fun part is that Leah has still been retching all afternoon, and after her feeds started she began to leak greenish fluid from the stoma, and shortly thereafter she had two episodes of vomiting greenish yellowish stuff. (You’re welcome for TMI.) So they called off her feeds for a few hours and did an x-ray to check placement of the tube. It’s in the right place, so she is just starting feeds again, this time at a slower rate. They will adjust her feeds gradually overnight, and we will see how things look in the morning.

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Oh – and how’s this for perfect timing: the Butterfly Fund posted a picture of Leah in her little piggietails and it totally went viral! The photo is nearing 475 THOUSAND likes. Holy moly!!!!!! So many people sharing LeahBug’s sweet smile! So cool and very encouraging when we are stuck in the hospital.

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We are all So Exhausted.