Patient: Alma Diagnosis: Heart Defect, Feeding Problems

Well, it's been 3 months since Alma's surgery, and she is thriving. The first few weeks she struggled a bit. But we saw a Pediatrics GI specialist who increased her Prevacid from 2mg a day to 5mg a day. That really made her tummy feel so much better. She still takes Lasix (sp) for her heart, but only until this fall. She’s finally caught on to getting her meds, so I have to wrestle with her. That’s the ONLY time I miss the feeding tube. Alma is up to 14 pounds. She can sit up on her own and is eating solids. She finally started taking the bottle consistently about two weeks before I went back to work. She won’t take it from me, but oh well. Now we’re trying to get on finger food and drinking from a cup. On June 5th, I went back to work. In June, I was working Monday, Tuesday, and Thursday. In July, I’ll work Monday, Tuesday, Thursday, and Friday. I’m still undecided if I’ll return full-time. We’ll see. Alma is doing great at our daycare. Elsie still loves her teachers and her friend, especially, Gustin. Alma loves playing with Elsie. Her favorites toys are a Stork beanie baby (just like Elsie) and a little life preserver from a stuff toy seal.

Alma left the PICU on Saturday, which was also my birthday. We could have left PICU on Friday, but no rooms were availabe. And today we went home. We had a close call today when they thought they saw something on the echocardiogram. They did a chest x-ray, and we were cleared. Long term we be monitoring her two small MVSDs and the patent ductus, which still has a very small flow. The PD could be fixed with a catheter - no surgery. Bummer. She has stopped taking the bottle. The more alert she became the less she would take the bottle. Thankfully, she is nursing well and seems to be quite hungry this evening. We are thankful to be home and really appreicate everyone's well wishes and prayers. But please keep praying for the other little babies with heart troubles. We met other families with much more ahead of them. Regarding the photo...The big incision is obviously from the surgery. The two slits are from the chest tubes, and the two spots to the right and left of the lower slit are from the pacer wires that were attached to her heart while she was in the hospital. The other remaining wires are just attached to her skin and were monitoring her heart rate. She has titanium wires holding her breast bone together. The bone will just grow around it. How crazy is that!

Mommy and Alma cuddle   Alma is looking much better today and is starting to look like herself again. They were able to take out two IVs and her chest tube today. Most likely she will move out of the PICU tomorrow and into a regular room. Vicki, one of my co-workers, dropped off a care package from my work crew. Games, puzzle books (my obsession), slippers, snacks, and a very cuddly blanket that the one of the nurses was eyeing up. The exciting news for Alma today is that she has taken 3, counted 'em, 3 bottles for the nurses. Up until now, she hasn't taken the bottle but for a few very inconsistant times.

This morning they removed her breathing tube, so she's breathing on her own now. The rest of the day, the med team spent managing her pain and clearing out her lungs. Her face is swollen so she's doesn't look quite like my little Alma bug. But she did look better when we went home tonight than she did earlier. The swelling is normal and will go down in a few days. All in all she's doing well. Thanks for all of your messages. Once we are out of ICU, we'll be ready for visitors. They expect her out by Friday. Off to pump and then to bed!

Just a quick update to let you know Alma’s heart surgery went well today – she’s off bypass and they fixed pretty much everything they wanted to, heart functions and pressures are where they want them to be, etc. Dr. Focker & the rest of the surgical team, the cardiologists, etc. were great throughout everything. She's in the ICU now and they'll continue to monitor her, but this is a big milestone. We expect to be in the hospital up to 2 weeks as they watch her heart surgery recovery and look at the feeding issues. Thanks to all of our family and friends all of your concern, support & prayers! --Rich, Kari & Elsie

Elsie playing in the snow   I thought with all the updates on Alma, some of you may be wondering what Elsie’s been up to. First of all, her vocabulary is crazy. She is talking in complete sentences now, knows her colors and shapes, and counts to ten (skipping 5). She also repeats everything she hears. I feel huge pangs of guilty when I hear her say, “Just a minute, Elsie.” But then I’ll hear, “I love you, Mommy, I love you, Hazel.” Hey, at least I come before the cat. She loves to play with her pets, Hazel the cat, and the two dogs, Lula and Omaha. Somewhere along the way, Omaha became “Ozma”. Hazel has to come to bed with Elsie during her naps. I’m not sure where poor Hazel is supposed to sleep because Elsie has about 6-8 books, Grumpy Baby, 4 stuffed animals, including a very large Pooh, a magna-doodle, a pillow and blankets. And heaven forbid we don’t put up her “tent,” which is a blanket draped over her crib. One day a week Elsie goes to school. Then we hear all about her teachers and schoolmates. Sometimes we hear about what she has learned in school that day. The other days during the week, Farmor comes over to help out. Elsie is finally calling Rich’s mom “Farmor” instead of “June.” I’m not sure who has more fun playing. Elsie or June? In the evenings, Elsie gets to play with Papa. They play guitar and listen to Elsie’s Yeah Yeah CD. Elsie wants everyone to dance. Sometimes Elsie and Daddy (she calls Rich both, “papa” and “daddy”) just laugh hysterically. We also sing. She likes to make up her own words to “Frere Jacque.” Elsie and I did have a chance to play in the snow a few weeks ago. She likes to scoop the snow. I like to watch her try to walk in the snow with snow pants on. We will sure miss her while Alma is in the hospital. Her grandparents will be sharing her, but she’ll be able to visit us at the hospital.

Look at those cubby legs!!!!   Just a few days until Alma's surgery. On Monday we had an appoinment with the cardiologist, Dr. Shanthi. Alma is doing well and should be ready to go next Tuesday. We will have a different surgeon though; Dr. Foker.will be doing the surgery instead of Dr. Harrington. When Alma was discharged from the hospital 6 weeks ago, she wieghed 9 lbs 13 oz. I think Dr. Shanthi was pleasantly suprised when Alma wieghed 11 lbs 14 oz. on Monday. She wanted Alma to 5 kgs for her surgery, and Alma will be 5.5 kgs! On Monday, March 27, Alma will go to the cardiology clinic for her pre-op check-up, which will take about 4 hours. Alma will have tests and more echos and more ultrasounds. Rich and I will meet with the surgeon to discuss the surgery in more detail. On Tuesday, we have to be at the hospital by 5:30 am. Yikes! After they admit Alma, they will start prepping her for surgery around 7am. By 9 am/9:30 am, they will start the surgery. Ten people will be working on her, including two surgeons, a cardiologist, two anesthesiologists, and the nurses. The surgery will take about 2 hours and then another 2 hours before we'll be able to see her. She'll spend awhile in ICU before going to a regular room and will be in the hospital for about 2 weeks. The doctors want to make sure that the surgery has resolved her eating issues before discharging her. She may need to stay on the Prevacid, or possibly have a G-tube inserted directly into her tummy. But hopefull, little Alma Bug will come home healthy and strong with no tubes, and maybe the girls and I can have some fun before I go back to work.

Alma hooked up to the feeding pump   Alma will nurse 3 more times during the day. I will also weight her before and after she eats, so that I know how much she has eaten. If she doesn't nurse 40 mls, she will get a supplement with the feeding pump. In preparation of Alma’s nightly feeding, and supplements I need to pump about 16 ounces of milk each day, beyond what Alma’s eats. That means I must pump 6-7 times a day - before I go to sleep, when I wake up, and then after each of Alma's nursings. Besides her weekly to doctors’ appointment to either pediatrician or cardiologist, a nurse comes to check up on Alma. She will take her temperature and blood pressure, and listen to her heart and lungs. The nurses also come to our house when Alma pulls her tube out. Notice I said "when" not "if". She has managed to pull it out three times now. Alma says, "But Mommy, I'm just trying to learn how to use my fingers!" Alma’s last nursing is at around 8 pm. After I pump for the 5th or 6th time, I need to get Alma’s med dosed up again. I will also mix-up a batch of milk (normally breastmilk has 20 kcal per ounce, but I fortify it with formula so that it has 26 kcal) and get the pump ready. Often Alma is fussy in the evening – probably the acid reflux, so I’ll rock her until she falls asleep. By 9:30 or 10 pm, Alma gets hooked up to the feeding pump for the night. She'll get 46mls/hour for 10 hours. Between 11:30 and Midnight, I’ll pump for the last time of the day. I’ll get at the most 5 hours sleep before we start all over again.

Alma getting her meds   So here’s been Alma's daily routine for the last month and half. Alma gets a food drip all night long. Mommy gets up around 5:30 am to pump. Sometime between then and 8 am, Alma spits up - a lot. We get her cleaned up and hope she doesn't do it again. But sometimes we have a second or third changing. I also try to get another hour or two of sleep. Depending on how the night and morning went, Alma finishes her drip between 8 and 9 am. Then I flush the line with water, get her medicines and vitamins dosed up, give her the meds via her tube and then flush the tube again. I try to pump again, but most mornings I don't get to pump until after Alma's first feeding of the day, which is somewhere between 10 and 11 am. In the mean time, Farmor has gotten here around 8 am and gets Elsie up and ready for the day. She will stay until Elsie goes down for her nap or longer if Alma has a doctor appointment. When Alma and I are home, I’ll try to get an afternoon nap in with girls.

Alma's pink eye is cleared up, but the runny nose lingers. She is still not eating very well, so I have been supplementing her with the feeding pump. Saturday we spent the afternoon at Children's ER (because her clinic was booked up) to make sure she didnt' have a ear infection. The doctors also did a chest extra to make sure her heart failure hadn't worsened. But no infection and the heart is the same, so we are bit stumped as to why she's not eating well. Hopefully, it's just her stuffy nose. On Friday, stupid Mommy went to clean up Alma after she urped up, but I forgot that Alma was still hooked up to the feeding pump. Alma started to cry. I thought I had just pulled off the tape holding the tube, but no I had pulled out the entire tube. We both were crying then. A nurse from Childrens Home Care came within two hours and put in a new one.

Alma and her big sis, Elsie   Her doctor wanted her to 5 KGs by her surgery, and, according to our scale, she weighs 5.06 KGs. So despite throwing up every morning, she’s gaining weight. She still gets fussy quite a bit. We’ve switch the formula I mix with the breastmilk a week ago. I’m afraid I’m might need to give up dairy. YIKES! At least it’s only while I’m nursing Alma. Unfortunately, Alma got my pink eye and my cold. Her pink eye is looking good – just one more day of drops. Hopefully the cold will clear up quickly too.

Alma at Childrens   We had Alma’s cardiologist’s appointment this past Monday. A team of ten doctors reviewed her case, and they have decided to do her corrective heart surgery as soon as possible instead of waiting until she reaches 6kg (~13 lbs). Now we’re hoping that she can get up to 5/5.5kg (11-12 lbs.) She is scheduled for March 28th, but if there are any cancelations, e.g., someone gets sick, then the doctors will move up her surgery. Since it's cold and flu season, we will probably be going in before March 28th. She is still having acid reflux issues and as a result still not gaining weight quickly enough. The doctors hope that the surgery will help the acid reflux as the lungs won’t be pushing on the stomach. If she still has eating issues after the surgery, they will insert a G-tube, which she could have until she’s one or two years old. The doctor says we’ll be in the hospital for about two weeks. Then hopefully the little squirt will start growing. Her surgery will be done the University of Minnesota by Cynthia Harrington, one the top peds cardiac surgeons in the country.