Friday, September 24, 2010

Homecoming!!!

Callie came home on Monday, September 20th, weighing a whopping 3lb, 8oz! She was 20 days old and a day shy of 38 weeks gestation. She has been doing well at home. It has been a bit of an adjustment for her getting used to a new environment (temperature, noises, etc). Her feeding volumes have dropped slightly as she seems to loose energy during feeding, but it is probably due to the energy she is using adjusting to home! We did take her to the pediatrician’s office Tuesday and she weighed in at 3lb, 10oz. Hopefully, in a couple of days she’ll start adjusting and picking up her volumes.

Since Callie is so tiny and still adjusting to home, we are trying to keep things quiet and easy for her. Although we would love to have visitors, we’d like to keep things quiet for a few weeks to allow her to adjust, as well as put on some weight and build up her immune system. Although the weather is nice and illnesses are not as frequent, Callie’s immune system is very fragile and her low weight would make it very difficult for her to fight off even a slight cold. Please remember, RSV season technically begins in October (although people can still pick up the virus any time of the year!). Due to Callie’s gestational age at birth, she will probably not qualify for the RSV vaccine (Synagis). As many of you remember, Henry got RSV while still in the NICU in late April of 2008 (the end of RSV season). He weighed about 4 ½ lbs at the time and was significantly impacted by the virus, which caused him to be on a ventilator for 5 days and extend his NICU stay by several weeks while he recovered. Obviously, keeping illness away is quite a challenge with two brothers in school/daycare! So, we have been practicing LOTS of hand washing, changing clothes, coughs and sneezes away from the baby, etc!!

Callie will have several appointments over the next several months. Next week she will have an appointment to examine her eyes for maturity and ROP (Retinopathy of Prematurity). ROP is more likely in babies who require oxygen support after birth; however, babies who are smaller than their gestational age are also required to be examined. Callie will also have another pediatrician appointment next week to check her weight and perform some follow-up labs. She will receive her 2-month vaccinations in November. Callie will also be followed by Wake Med’s Special Infant Care Clinic (SICC) to ensure that she is gaining weight and developing appropriately. Like Henry, Callie also qualifies for services through Wake County’s Early Intervention (EI) program. We will be meeting with her case manager next month.

The boys are very excited about Callie’s homecoming! Stewart is very interested in Callie and is very concerned with her well-being. Henry is also very interested in Callie and needs to be reminded to be “gentle!” Callie’s new bedroom is coming together well, with the new lavender walls adding a touch of “girl” to the house!

Henry seems to be doing well after having the tubes placed in his ears. He has picked up a cold and was complaining that his ear hurt this morning. Sigh… we’ll have the doctor check his ears today. We heard from his GI nurse practitioner last week that the biopsy results from his endoscopy are clear! What good news and such a relief! This means that Henry has been tolerating the small amounts of dairy he has been getting through occasional foods like pancakes (or “ca’cakes” as Henry calls them!). We haven’t heard what his allergy results are yet, but should know early next week. We are hoping that his allergy levels have decreased, indicating that he will likely grow out of his dairy allergy! We are keeping our fingers crossed!

Sorry, no pictures this time!!! I’ll try to post some in a few days!

Tuesday, September 14, 2010

A Time to Brag!

Everybody is doing very well!

Callie is 2 weeks old, or 37 weeks gestation. She is still in her isolette due to her small size. Although she is maintaining her own temperature well, the isolette is enclosed, which helps limit noise. Since Callie doesn’t have to “work” to filter out noise, the isolette helps her maintain her energy so that she can grow well each day. The isolette also helps her not work so hard to maintain her own temperature. Callie now weighs 3lbs, 3oz!!!

On Saturday, Callie decided she was done with her feeding tube… she pulled it out three times before the nurses finally decided to just leave it out. She has been taking her full feeds, which is now up to a minimum of 28mls (for reference, 30mls is 1oz), all by herself since Sunday! Callie and I have also been successfully breastfeeding! This is such an accomplishment, and a goal that I very much desired! Ignorance and poor nurse support ended my attempts to breastfeed Stewart. Henry and I rode the breastfeeding roller coaster from hell that ended with a screeching halt. Callie was quick to learn and has breastfed for many of her feedings!

Callie has had several lab tests over the past couple of days. Her bilirubin levels have resolved. Her red blood cell count is appropriate and she is making her own red blood cells. Will and I also requested that a Complete Blood Count (CBC) be taken. A CBC measures the concentration of white blood cells, red blood cells, and platelets in the blood. The test details the concentration of the various types of white blood cells, as well, including Eosinophils. We were interested in knowing if Callie’s Eosinophils were elevated, as high Eosinophil counts were the only sign of a problem with Henry when the cow’s milk allergy was first suspected. Fortunately, all of her counts were normal!

The neonatologists are very pleased with Callie’s progress. In order to go home, babies have to achieve four goals: 1) no apneas (pauses in breathing), 2) taking all feeds orally (no tube feedings), 3) gaining weight, and 4) maintain their own body temperature. Callie is successfully doing each of these things. Now she needs to do all of these things together. On Thursday, the plan is to move Callie to an open crib. Once this happens, she will need to show that she can maintain her own temperature, filter out noises, continue to take all her feeds orally, and continue to gain weight. Once she has successfully accomplished this for several days, we can go home! If she is able to do all of these things, she could go home as early as next week! We are very excited and proud of our little girl!

This picture of Callie was taken today and shows her typical sleeping position with her arm draped over her face! In fact, we were never able to get good ultrasound pictures of her face because her arm or hands were always in the way! I’ve been told that this was also the typical sleeping position of her Great Grandmother Callie, who she is named after! Here is a video link of Callie: http://www.youtube.com/watch?v=rb8pHbyQST0

Henry had surgery Monday at UNC for his ear tubes and endoscopy. The surgery went very well. The ENT observed a lot of fluid in Henry’s right ear and was able to drain much of it. She also looked at his adenoids and it was decided not to remove them at this time. The GI specialist observed normal looking esophagus, stomach, and intestines. Small biopsies were taken from each of these areas to be analyzed for Eosinophils. It will take a couple of weeks before we have the results. In addition, blood was taken to be analyzed for cow’s milk allergy, which will also take a couple of weeks for the results. Although the surgery was not scheduled until mid-afternoon, Henry recovered very well. He was running around playing with Stewart later that night! Prior to the surgery, Henry was given Versed to help relax and calm him. They should’ve given me some of that before my C-section!! Henry was quite the smiling, wobbly toddler! We couldn’t help but take a quick video! http://www.youtube.com/watch?v=B1WhfdI9w8E

Stewart is also doing well! His last day of his 1st nine weeks of 2nd grade finished up on Friday. He came home with a good report card! His teacher noted that he has mastered his math skills and needs to continue practicing reading and writing. He is enjoying soccer camp this week and we are looking into other types of camps for his remaining two weeks to try and vary his track out activities.

Tuesday, September 7, 2010

Happy 1 Week Birthday, Callie!

Callie is one week old today, or 36 weeks gestation! She is still doing very well! They are continuing to watch her bilirubin levels, which increased slightly over the past few days. This morning, her bilirubin decreased, which is good news! So, she has been able to avoid the phototherapy.

Yesterday, her feeds were increased and she is now getting the “full feeds” for her current weight, which is 25mls (or just below an ounce) of breastmilk every 3 hours. They also began supplementing my breastmilk with a formula known as Enfacare (which is specially designed for preemies). Supplementation provides 2 additional calories per ounce of breastmilk. It also provides vitamins and minerals that are not present in breastmilk but are usually supplied during the last weeks of pregnancy, such as calcium and phosphorus, which are important for bone health. Since Callie is up to “full feeds”, she no longer has an IV since she does not require any additional fluids. Callie weighs 1240g, or 2 pounds, 11 ounces.

Today, Callie was trying to show everybody that she is a big girl! She has remained in an isolette, which has been set at its lowest temperature setting, so that she does not have to work hard to maintain her own temperature. Apparently, she doesn’t have to work too hard because she has been hot all day! We have even removed her blankets and clothes to try to keep her cooler. Babies are not usually able to maintain their own temperature until they reach approximately 1500g (or ~ 3 ½ pounds). However, most babies Callie’s age are already above that weight and are “mature” enough to regulate their own body temperature. Although Callie is old enough, the doctors are not comfortable taking her out of the isolette due to her low weight.

Callie had a head ultrasound this morning to check for signs of an intraventricular hemorrhage (IVH), or bleeding in the brain. This type of hemorrhage is more often seen in preemies born at early gestational ages or low birth weight preemies and typically occurs within the first week of life. Although we haven’t received the formal report, the technician told us that he did not see any signs of an IVH.


Henry had his hearing screening this morning. The purpose of the screening was two-fold; it is a requirement for his next evaluation with Wake County’s Early Intervention Program (which should occur by the end of the year), and it is a pre-op requirement for getting his ear tubes. The results were a surprise to us… Henry has moderate hearing loss in his right ear. The good news is that it is not expected to be permanent. It is expected that the hearing loss is a result of fluid build-up behind his eardrum, which is preventing his eardrum from moving properly in response to sound. The persistent presence of fluid behind his eardrum could be the culprit for many issues we have seen with Henry, such as poor balance (noted by his PT and OT), slow speech emergence, feeding difficulties, and possible may be contributing to his sensitive gag. We are still waiting for his surgery date, but are hopeful that it may be scheduled next week.

Stewart is doing great! He scored a goal in his soccer game tonight! This is his last week of school before he tracks out for a 3 week break!

Here’s a cute little video of Stewart and Henry playing air hockey! http://www.youtube.com/watch?v=8YSVYp9dlQg

Sunday, September 5, 2010

Baby Callie

Callie is doing very well! She is 5 days old today! As with many preemies and even full term babies, Callie’s bilirubin levels increased and she required phototherapy on Friday. Her levels returned to normal very quickly, though, and the lights were removed Saturday morning.

Due to the c-section and some of the medications I’ve been taking, my body has been slow to produce breastmilk. We don’t want to hold Callie back from eating, so she was started on Enfamil Preemie Formula Friday afternoon. My supply has increased slowly over the past couple of days, so she is now getting mostly breastmilk. She has done very well with her bottles! She is able to eat many of her bottles by herself. However, since she is so small and runs out of energy quickly, a nasal gastric (NG) tube has been placed through her nose to help her finish her bottles. As with all newborns, Callie’s weight dropped slightly after birth (down to 2lb, 8oz), but she has quickly made it up and now weighs 1200g, up from her birthweight of 1180g.

Callie is still in an isolette to help her maintain her body temperature. She is doing so well that the isolette temperature is set at its lowest temperature. She will probably stay in the isolette longer than she needs so she doesn’t have to work so hard and burn energy to maintain her own temperature.

So far, Callie’s experience has been very different from Henry’s. Our emotions and thoughts are in different places this time. Fear and the unknown have been replaced with knowledge, confidence, and directed questions. Callie has come to us as an “older” and healthier baby. We are aware of the possible risks Callie may still face and we also know what needs to be done for her to make progress. The staff at Rex has been great! The neonatologists talk with us almost daily and are always available via pager if we have any questions. Since we have had a preemie birth before, I think it is much easier for us and the staff to speak freely in great lengths about the best care for Callie. Often, there may be varying opinions on medical care provided to preemies, and we have been happy with the approach and direction the team at Rex has taken with Callie. And as expected, we have been a part of that process.

Today, we talked about fortifying my breastmilk. It is common practice to fortify breastmilk with other formula to provide additional nutrients as well as additional calories to help with weight gain, especially with babies born IUGR. There has been some debate about when and what type of formula to supplement with. We want to make sure that changes are not made too quickly and possibly disrupt Callie’s digestive system as well as ensure that the formula used to fortify is the best pick for Callie. Callie’s volumes are slowly increasing, as tolerated, to bring her intake up to achieve maximum growth. Formula supplementation will likely occur in the next day or so.

Friday, September 3, 2010

Welcome Callie!

Callie Elizabeth Patnaud has arrived! Callie made her early entry Tuesday, August 31st, at 9:57pm weighing 2lbs, 10oz and measuring 15 inches! She was born at exactly 35 weeks. Her delivery went smoothly, as planned, and she entered the world with a healthy set of lungs!

The decision to deliver Callie early was made at my appointment on Tuesday following the growth scans and ultrasound. Previously, at 32 weeks, the doctors had estimated her weight to be 2lb, 15oz. After Tuesday’s growth scans, her estimated weight was 3lb, 2oz. In addition to very poor growth between 32 and 35 weeks, the amniotic fluid level had decreased by over half since the previous week. As a result, Callie did not pass her Biophysical Exam. You can imagine our surprise when we learned that Callie’s birth weight was ½ lb less than their prediction!

Callie is 2 days old and is doing very well! She has not required any oxygen intervention and has been breathing completely on her own. Since she is small, they have her in an isolette to help maintain her body temperature. Since her GI system is young, they have started her on TPN, which are fluids with protein. Although Callie is small, she is developmentally a 35 weeker. She and I were able to practice breastfeeding today! It went well, but we still have a long way to go! Since Callie is a “late term” preemie she does not need the critical care provided through Duke. Instead, we are at Rex Hospital where we have been very impressed with the Special Care Nursery and team of nurses and neonatologists.

Stewart is very excited about his little sister! He got the opportunity to meet and visit Callie today and really enjoyed getting to be a BIG brother! Henry is still a little young to understand that he now has a little sister, but he was able to visit me today in the hospital!

Keep watching out for updates!