This past week Zuzu got it- and by it I mean that everyone has Mommas and Poppas- not just her. While Gramma was here she reasoned out that Gramma was my Momma and Nana is Lovey’s Momma. Which was a delight initially and then a little less and less sentimental as the weeks went on. At one point I heard my mom calling Zuzu Lady. Zuzu- of course responded with, “I’m not Lady, I’m Zuzu!” At which point my mom tried a new bargaining chip- that if she would continue to call her Gramma, then she would remember to call her Zuzu. You can’t blame my mom- she’s waited patiently to earn this revered title and has worn it proudly. Zuzu would agree, and then a little while later come to tell me something that my momma needed. Oh dear. Well when Auntie D gets married this fall my guess is her title will be the next to fall as Zu continues her current train of thought and notices that D is my sister, just like the Quail is her sister. Enjoy it while you can family!
2. Caring Grammas
3. Warm thoughts from loving family and friends holding us fast and staying vigilant through the long worry-filled nights
4. The Quail 2.o
5. Pink triangle boy & girl cakes
6. Gramma getting cuddle time
7. the presence of such determined and strong-willed children in my life & home
8. an awesome support system
9. Auntie’s sending characters of comfort
10. Uncles sending Texas brisket to keep us strong
11. A Quail rocking her scar
12. A fast friendship between a certain Gramma and Chula Cat
13. An understanding boss and work environment during a trying time
14. health insurance
15. The Daily Show & Colbert Report
16. infinitely cheerful children
17. Carolina Cremes
18. A speedier than anticipated recovery
19. A new chomper
20. A confident & self-reliant 3-year-old cheerfully showing Gramma through the days of our nest
21. A strong-spirited baby who inspite of having a pin-size opening through which to nourish herself for the past 15 months, Down syndrome which tends to produce smaller than average kiddos and a heart defect that frequently can produce failure to thrive, congestive heart failure and difficulty in growth; has miraculously managed to keep herself between the 25-50% in growth on the standard charts.
Blessings all around.
All is well with the Quail.
That’s the short version; for those more medically curious here’s how things went down:
Wednesday began early. The instructions were nothing by mouth after midnight. I gave her 10 oz of breastmilk at bedtime thinking I would head off a long night of UN negotiations over the lack of breastmilk in her immediate hours. About 11:45 pm Zuzu woke up wanting help to go potty. So I used this time to mix up another 6 oz thinking I had sealed the deal with the Sandman. No luck, she woke up at 2:30am hungry, and not just a little bit. Lovey and I took turns holding, talking, rocking and singing to her. Each time we would think she had settled in and try to adjust ourselves for sleep she would wake up and start hollering. At one point I got on the computer and pulled up the lullaby “Night Mantra” by Renee & Jeremy on YouTube and played it over and over and over- which it’s rhythmic and harmonic tones did their trick, but after an hour of this I was the one dropping off instead of her. We finally gave up the pleadings, popped in the Lullaby DVD by Baby Einstein; which for us has a PTSD effect; bringing back a flurry of flashbacks from the first few weeks evenings home with the Quail and our attempts to satisfy both her and Zuzu’s need for some sort of mellow stimulation and our need for the subliminal message that it was bedtime. She was happy, a little too happy to see the lambie puppet and we finally acquiesced to playtime with the new Dr. Suess characters that Auntie D had sent in anticipation of the need for a furry friend during the hospital stay. Once Gramma got up at a more reasonable hour she was able to hold her while we did last-minute packing for the hospital stay.
We got Zuzu up at 6:30 am for a last nursing and round of hugs with her and Gramma and then headed off to the hospital; happily stopping by Carolina Creme Donuts for a dozen sugary soldiers to stand in the foxhole with us during the wait. The Quail was pretty wiped out from her night on the town and had the good sense to arrogantly doze off on the ride to the hospital, only to awaken in time to charm the waiting room of surgical families until she was called back. The staff at Greenville Memorial Hospital were top-notch and super-sensitive to her animated need to show off her shiny new developmental milestones of alternating stranger and separation anxiety. The child-life specialist came back to wait with us and schmooze the little bird. The anesthesiologist did his best Donald Duck and the flurry of OR nurses appropriately oohed- and aahhed over her plump belly, sweet cheeks and Cool-Hand Luke staredowns. The CLS won her heart and so she became the chosen one to carry her through the OR doors. They assured us that our 22 lb 3oz bundle of joy would be awake less than a minute from the time we handed her off at the OR doors until she would be asleep. I was pretty worried about having to listen to cries even for that minute but Lovey put on his best game face- Peek-A-Boo game that is and she grinned her way through the doors in the CLS’s arms. A blessing for all of us indeed. The other favorite game of the Quail’s is a count-up to a handoff with big swinging gestures flying her there and so that is how the hand-off went down.
We busied ourselves in the waiting room armed with the month’s bills for mind-numbing household duties needing to be finished, the box of donuts- 3 sour creme for Lovey, 3 white frosted with coconut cake for me, 3 raspberry bismarks, since I ordered them and 3 raised-glazed to satisfy Lovey’s standards. Judge if you must- we all cope in our own special way. Once the bills were done and the sugar kicked in we moved on to episodes of The Daily Show to keep us feeling upbeat and witty.
When we were expecting Zuzu, and knowing we were going in for an inducement and an epidural we had spent hours debating the merits of different TV genres and how well they would keep us engaged and focused on them without too much violence. We had settled on 2nd season of 24. Earlier the year before we had loved watching the first season DVD’s and the thrill the show brought on when you were uninterrupted by commercial breaks to lower your blood pressure and heart rate. We figured would keep our minds distracted enough. It hadn’t worked out though as we had to switch hospitals at the last-minute due to a full moon filling up the place with full-moon bellies needing relief before I was scheduled to arrive. The new hospital had been lacking in two basic stimulation requirements we had been counting on- an inroom DVD player and a downstair’s coffee shop. Oh well- the best laid plans do not typically apply to births as any experienced mother will tell you.
About 30 minutes in to the Quail’s surgery, we received the call from the OR on the “OR report phone” in the surgical waiting room. It’s a bizarre process to say the least which I’m figuring was implemented by some little focus group that tried to put themselves in the family’s place: “What would you want to know while you were waiting?” “Well Chuck- I think it would be good to give a blow-by-blow of how things are going!” The flaw in this plan, which is a pretty common flaw in most of the best plans I think- is the actual, in the moment, human interaction that relies on the so-called judgement of whomever happens to be on duty and assigned to this task. Our call went like this:
“Mr. Lovey- The Quail is doing fine. All is going well. The doctor has been working on her for 30 minutes and if it goes any longer than another 30 minutes we’ll call back. Otherwise expect Dr. Snip-Snip to come out with the final report in 30 minutes”
Do you see the problem? First- the visual. He’s been WORKING on her for 30 minutes. Ugh. Any loved one with the stimulation of caffeine, sugar and Mr. Stewart running through their veins and any amount of imagination does not want that visual in their head.
The second- the exacting of a specific number of minutes left in the procedure. You can guess what happened next- they weren’t done in 30 minutes, and us being set up with a stop watch time and all were feeling a bit restless. When the kind doctor came out my heart stopped. He called us over to him. Seems innocuous enough; but we had spent the last hour in a very public waiting room watching surgeons come and sit down next to the families and deliver the update and next set of instructions. And when our anticipated visit time came and went we were naturally a little jumpy.
It was allfine though- he was just a little “pacey” and hadn’t want to step over all the legs sprawled out to get to us. Have you ever seen a surgeon after a surgery? I hadn’t. I have no idea if this is typical but our Doc looked like he had just run a marathon in record time. He had such a glow of success around him. An obvious endorphin rush. He didn’t actually say, “Dude that was awesome!” But I wouldn’t have begrudged him the phrase. He said it was an excellent teaching moment for the students and was a classic obstruction.
This is where it got a little scary; when the reality of what our dear bird has been coping with rained down and drowned us. The opening that she had to get food through to her stomach was the size of the tip of a pen. And by tip- I do mean the end that you write with. I mean the size of that tiny roller ball that passes the ink from the pen to your page. Her intestines functioned not unlike a water balloon in that they would fill up and expand until the pressure was great enough for her to push the food through the opening the pen hole opening that is about a millimeter in diameter. Everyday, all day; since her little heart was born. What prevented the obstruction from being full was it’s location. It was at the entrance of the bile duct valve from the pancreas. Doc was able to excise 95% of the web, leaving the remaining bit that pressed up against that opening so as to be careful not to damage it. The surgery only required one skin incision but 2 areas of the duodenum to find where the web started and then to be sure where it went down to. In all she was away from us for about an hour and a half- which in the end was what we were originally told.
Bless the mommas, papas and grandparents that work in the hospital. They get it. The care of a child and what it means to a worried heart. We went back to recovery and saw a surrogate Grandma in scrubs holding and rocking our whimpering baby. The staff were quick to let us know she kindly had not seen the light of the crib that was assigned to her. She had been held in warm arms and comforted until we could be with her again. As a momma that warms my heart- if I can’t have my baby in my arms- may someone who knows kindness hold her in my stead. I took my spot in the rocking chair and we held her while vitals were checked and stabilized and a room was cleaned for us. We weren’t down there too long before another nurse took us up to our room in the pediatric wing. For the first 24 hours our bird mostly slept- initially held by us and then later laid next to us in the crib when we realized we were causing her to flinch with each of our movements that she couldn’t predict and brace herself for. She had an excellent response to morphine. It took literally seconds from the insertion in her IV till she calmed and snored. The kind nurses were quick to notice tiny facial expressions indicating her pain and respond quickly to it. Technically there was only a twin bed in the room for the grown-up; but our first nurse let us know that there was nothing wrong with Momma sleeping in the crib with baby, so plans were made for both of us to stay with her.
Back at home our angel Gramma had Zuzu happily entertained. They baked pink cakes, made welcome home pictures, talked about and practiced new hugs that would keep the Quail’s incision safe while still allowing for their frequent need to cuddle. The morning after the surgery when I called to check in; my mom (as Zuzu took to calling her, as in “Your mom said I could have gummies Momma!”) told me she thought it was a bit odd that Zuzu asked for Dolphins for breakfast ( don’t worry- dolphin shaped chicken nuggets- no actual dolphin’s are harmed in the feeding of our child) but figured with the stress of her sister’s hospitalization we should just go with the flow with most of Zuzu’s requests. While I was on the phone and listening to this odd tail though I suddenly had a light-bulb go off as to the reason for this sudden interest in dinner at 7am. Sure enough as we were discussing it I heard Zuzu come running up in the background to announce to Gramma, “Gramma, I’m all done with my dinner- now I get a treat! My momma always gives me a treat after I eat my dinner. I’ll take an ice-cream cone now!” Yeah…..not cool kiddo. Totally working the system. I do honestly believe she thought she had just figured out the answer as to how she should logically be allowed sweets at 7am though and earnestly wondered why her own parents hadn’t figured it out before now! Unfortunately for her, since I was on the phone at the time her caper had a quick and less than sweet ending as I told my mom to let me talk to her right now.
Meanwhile in the hospital, the Quail passed through all her levels of recovery quickly with one minor blip in the overall picture. We had been told that she would require a naso-gastric tube for filtering out the site for the first 2-3 days, after which they would remove it and we would begin attempting to feed her orally again while she received most of her nourishment by IV to safeguard against dehydration in the transition. That first evening our nurses surprised us by hinting that she might start back on the bottle the next day. Unfortunately we hadn’t planned for this quick of a recovery or for both of us to stay over. A dear friend was able and willing to run back to our house though to collect bottles and blankets for us and to top it off with a shiny balloon for our girl. It was nice to have a reminder of the outside world and have some grown-up, non-medical conversation while the bird snoozed. Much later, as all bad things tend to occur, during the first night’s vital checks her tube suddenly started filtering out bright red blood and filling up the container at an alarming pace. The surgeon was called in the middle of the night due to a panicky mom & dad’s insistence and this mom found her Achilles’ Heel at the sight of her child’s blood. I have a history of being a fainter in stressful situations but hadn’t actually experienced it in years. As soon as I saw a container of the bird’s blood collecting though I found I couldn’t remain upright to comfort her. I was infinitely grateful that we are a two-parent household with Lovey having the stronger stomach of the two of us. The doctor felt certain it was just that the NG tube had gotten stuck on the side of the stomach wall though and that the suction was pulling blood from there- not anything more serious. They turned off the suction and we all wearily returned to our corners wishing for a morphine IV drip round for the house but settling for a single serving for the Quail.
The next morning during rounds the bleeding had subsided and our surgeon said that around noon they could remove the tube and at 5pm- the day after the surgery (picture the astonishment on Lovey’s and my faces) we indeed could resume feeding her by mouth. Well our bird clearly had this sweet imagery enter her dreamstate as she spend the afternoon in a morphine induced haze while she sleep nursed off and on until 5:04pm- at which point she suddenly woke up with a grin and a giggle and started hollering for her bottle! 30 hours post surgery our bird was ready to fly! She had 3 oz of thickened pedialite with her old friend the bottle, flirted briefly with a dear friend of mine who had come to sit with us for the afternoon while we waited out the haze; and then dropped back off to sleep for the night. She didn’t really waken again until the morning the next day when we discovered she had ripped the tube off of her IV and soaked the bed with fluids. She had thankfully though, taken a new bottle of pedialite sleepily during her vital checks throughout the night.
This morning on rounds the surgeon said it was fine to switch back to thickened breastmilk and if she stayed on this path she could go back to babyfood the next morning and be released shortly thereafter. Two more friends of the Quail dropped by that afternoon, and unfortunately, or fortunately depending on your perspective, our one friend who is a current nursing student had to practice her training on the spot as she assisted in what turned into a 40 minute, 4 vampire attack in a third attempt to get 3 more vials of blood from the Quail for the tail end of her thrombosis panel. We had spent weeks trying to get her checked prior to surgery for Factor V Leiden since I have a single copy of this gene mutation and was worried about the impact of it on her with major surgery. I was more than a little frustrated by our pediatric hematologist’s office and the difficulty in getting this information. They ran every lab in a thrombosis panel but the one we asked for prior to the surgery. And unfortunately, by the time the lab results were in, indicating the one lab left out was the Factor V, it less than a week before surgery. The only good thing was, the rest of the panel had come back normal. Our hematologist felt confident she was not at risk during surgery even if she had the disorder we were looking for but had not taken the time to explain why. Eventually a different doctor from the practice came to see us at the hospital and explain that Factor V would only be an issue for her once she was older and had a higher level of hormones in her system and if she was to be immobilized for weeks at a time. Since neither were the case it had been fine to proceed with the surgery. They could have saved us all alot of worry though if they had more thoroughly explained why she wasn’t at risk from the beginning. As it turned out, a week post surgery we did get the results and indeed they were positive for a matching single copy of the Factor V gene- just like her Momma.
The nurses agreed to remove the IV from the Quail finally on Saturday morning when she essentially handed it to them over a pool of blood on morning rounds. She was done with it at that point, and they were about done with her. She moved on to Weeble Wobble status while sitting in her crib and gave us all a fright when she kept trying to roll over onto her belly against our better judgement. The doctor said if she wanted to sit up or roll over it was her prerogative to do when she felt up to it. She was really wobbly for the first few hours sitting up. The doctor said that in the process of the surgery they had physically manipulated and handled the stomach muscles and that would cause a slight weakness for a few days. He assured us everything had been put back in its place though and wouldn’t cause any long-term damage.
By 10 am on Saturday the Quail was sitting up, squawking and whipping her hospital-given-thank-you-kindly-for your-stay-and-dollars, complementary toys out of her crib at the nurses. She was back to her most charming by the time the surgeon came through for a final check and discharge. She was quite fond of this one and was reaching up to pat his cheek and managed to work a babysitting offer out of him before she was done. We packed up that morning and were on our way back to our nest by 11am the Saturday after surgery. She managed to get by on sporadic doses of regular Motrin for the next day or two until teething started in and interestingly interrupted her and all of our’s sleep in a much more dastardly way than major surgery had. By last Wednesday morning the culprit- the top, left of center finally broke through in a pool of drool. She’s now working on it’s partner and if we could help move it along- we surely would because we feel both guilty and simultaneously inclined to ply her at night with her lortab prescription; that while intended for post-operative pain, would be a gift against the greater evil- teething pain.
Since our homecoming the Quail has been making up for lost time. We had Gramma staying with us for an extra week after surgery expecting a sullen and dazed post-operative baby in need of 24 hour comfort. What we got is The Quail 2.0. We are so incredibly shocked and in awe of her speedy recovery and giant developmental leaps in the first week after major surgery. In the last week she has started pulling herself up and rocking in the crawl position. Bouncing in time to any music played while she is sitting. Talking in a new tone that can only be explained as baby-ese, less of a random babble, and more of a thoughtful- “I’m trying to tell you something here, people” insistence. And the laughter, my God- deep belly laughter evoked by a simple smile from her peeps. It brings tears to your eyes and warms our hearts as it echos through our nest both at 6am and 10pm at night only vaguely prompted by her surroundings. We cannot believe the immediate changes in her. She is filled with energy and laughter and determination. She is one of the strongest and most inspiring people I know. Just like her sister who has taken to tending to the needs of all the stuffed animals who suddenly find themselves in need of a little hospital care. These girls are so pure and confident in their lives. They show us that all of our fears are really in our heads- and we should just follow our hearts and tend to our immediate needs. Like dolphins in the morning and the removal of IV’s that nurses have carelessly left in beyond their necessity.
Tomorrow is the big day! Please pray for the health, well being and quick recovery of the Quail as well as the steady and kind hands of the surgeon. We can’t believe this day is finally here but it’s time to repair her duodenal stenosis. We are blessed to have Gramma here to watch over Zuzu while we are with the Quail at the hospital. We’re all a little choked up with fear and worry at such an invasive procedure for our sweet bird; but it’s necessary and her little world will open up once it is repaired. We are hopeful that this will help stop all of her vomiting and allow her to ease into big people foods- for which she has been clamoring and eyeing our meals longingly. Since it wasn’t emergent- only a partial blockage and she has had really good growth this past year we were able to hold off until Lovey’s semester was over and Gramma could get her so that we could take shifts with the children. The expectation is 4-6 days in the hospital with the first 2-3 requiring the Quail to be on a naso-gastric tube and IV for her nutrition.
We are so grateful for everyone’s kind words and thoughts that are already watching over us. Please continue and we’ll update as we can!
Lucky, lucky us to have met this dear talented spirit!
You captured our heart Ms. Molly!
Thank you so much!