Day 5 - PICU & 4TH FLOOR, Children's Hospital

Well, it's been 5 days since our little Elsie was taken to Children's Hospital in Omaha in critical condition. She was diagnosed with RSV with pneumonia and a strep infection last Wednesday, February 24th.

Today has been a bittersweet day. I miss Chris already; he just left for Lincoln with the girls. He will be returning to work tomorrow and traveling back to Omaha in the evening. I miss my family. Cafeteria food is getting old, etc.

We have learned so much from this whole experience. For example, did you know that almost 100% of the population has had RSV by the age of 2? Just like the common cold there are different strains of the RSV virus. Even though Elsie has RSV, she can still be reinfected with another strain of RSV. Hopefully next time it happens (because they said it probably will), it will be mild and could even present as a little cold. The decision was made yesterday to wean off the ventilator and extubate at night!! They started the process at about 6 p.m. They stopped her tube feedings so that her tummy would be empty. In case the need for re-intubation would occur, they did not want her to aspirate any milk. They decreased her sedation by half and then completely. They cut back on her ventilator settings little by little throughout the day. She kept up with her own breaths very well. Her tube was pulled at about 10:15 p.m., followed by her feeding tube and the urinary catheter. That made her look much more like Elsie and less like a very sick baby!

Next I got to hold her!!!! It was an emotional moment - comparable to the first time I held her when she was born. I think she was telling us thank you for getting rid of that nasty tube because she started smiling at Chris. I cried. It was the first time she has genuinely smiled! She was studying him very intently and then her eyes brightened followed by a smile. Believe it or not, she has been very smily to both of us since that moment. This makes me smile too.

She was put on oxygen through her nose following extubation. Since her saturation levels were so good with the oxygen, they monitored her without the oxygen. She was still doing well, so that is the last time she has had oxygen. She resumed nursing for the first time at 4:00 a.m. It was fairly successful but now has regressed since. After unsuccessful attempts to nurse and bottlefeed, they put the NG feeding tube back in her nose. They started this at a rate of 3 ounces every 3 hours. She followed by throwing it all back up. Lovely. Cut back some and will try it again. I am telling myself to be patient. It's tough!!!

Rewinding back to noon, we were moved out of intensive care and up to the 4th floor. Elsie remains on a couple monitors. After talking with the hospitalist on the 4th floor, Elsie needs to have good feedings and weight gain as she did before, as well as good respirating status. They will start oral antibiotics twice a day. Her cough still sounds terrible. She will likely continue with coughing for 2-3 weeks. This is normal for RSV infected infants. Yay...

My wagon ride leaving the PICU to the 4th floor!

Overall, we are thankful that Elsie is off the ventilator and out of ICU. Hoping for a better feeding day tomorrow though!

Day 4 - PICU, Children's Hospital

It's been a pretty uneventful day so far for Elsie. She is hanging in there and getting healthier! What a little fighter. We are happy with her progress. In this morning's rounds, the doctor ordered to wean off ventilator support. They will decrease her sedation medication in the morning so she wakes up for extubation! When she wakes up, they will pull out her tube. The care team is pleased with all her numbers so we will likely see an earlier than expected leave from the intensive care unit. The antibiotic should run through a total of 14 days. That leaves me hoping we will be back home by next weekend.

Words cannot express how grateful we are to our family and friends! We thank all of you who have offered to help us during this hard time. Thank you to all of our family for supporting us and helping out with our other girls. I know the girls love being with their grandparents and aunts and uncles. You all mean so much to us.

Day 3 - PICU, Sleepy Elsie

FRIDAY EVENING UPDATE: Elsie had a good day! In physician rounds tonight they have instructed to keep the same plan since things are going smoothly. It's possible that they may start weaning her off the ventilator tomorrow. We will know more after the morning rounds. She remains on fentanyl which is for pain, midazolam which is a sedative, as well as an antibiotic that treats the bacteria, streptococcus, they found near the breathing tube in her trachea on Wednesday. Today they have also started fortifying her milk with formula powder to add calories to gain weight. She was 10 lbs, 9 oz at Monday's appointment and was down to 10 lbs, 3 oz by Wednesday's big ordeal.

This morning we were told that Elsie did not qualify for the second dose of the clinical trial medication that I posted about earlier. This is because her improving oxygen levels were so good. =)

Also this morning Chris and I left Omaha for a break and returned home. I had a doctor's appointment, so we took advantage of a time to freshen up and do laundry. We returned to Omaha with two cars and our oldest daughter this time. We had missed Alexis for most of the week, and it was good to see her for the evening. She has dealt with the whole process just fine. Even seeing Elsie was okay for her. She knows Elsie will be fine and get better.

The yellow tube going in her nose is called an NG tube which feeds her milk. She is up to full feedings at 20 ml per hour. Elsie does have "awake" periods where she opens her eyes. However, she looks very dazed and confused. With the sedation given to her, I think it is more of an involuntary reaction. Day 2 she was sure studying Chris though! So precious!

Sleeping soundly

Day 2 - PICU, Children's Hospital

Today's happenings with Elsie:

Chris and I consented to start a PIC line (central line) at the recommendation of the intensivist this morning at about 1:30 a.m. The doctor originally ordered a second IV to be placed in case the first one in her arm went bad. This can sometimes happen. However, the attempts to start a second IV in her feet was unsuccessful. As you can imagine, baby veins are itty bitty! The central line was inserted into her groin area. This line is good for administering medications and taking blood for labs. Elsie tolerated the procedure well, and the doc was able to get it in on the first try.

Later she received a catheter placement. She was not having many wet diapers, so this has helped her a lot.

We've noticed a few times on the monitor that she has tried initiating some of her own breaths beyond what the vent is giving her. It comes and goes because she is so sleepy with all the sedation that has been given to her. It is easier for her to let the vent do the work for her.

Chris and I left at about 3:00 a.m. and headed to my sister's house where we crashed until 8:00 a.m. I think we both slept very soundly after being so exhausted from yesterday's events!

After returning this morning, the doctor came in to talk to us about a clinical research study that Elsie was eligible for. Since she has Acute Hypoxemic Respiratory Failure and is on the ventilator, we were given information about this trial as well as the possible side effects and benefits. After visiting with the doctor and nurse and reading the paperwork given to us, we consented to the study. RSV has been treated the same in the last several years, so they have been wanting to find something that would provide better, quicker results. This low-risk study has been proven to give generally positive results. If anything, Elsie will be able to get off the ventilator earlier. It deals with a synthetic surfactant - a substance which is found in the lungs - called Lucinactant. Since Elsie was not born premature, she poses minimal risks receiving it now. She will get one dose now and if they see improvements they will give a second dose in 12-24 hours and be done. Our hope is to help with the advancements in medicine, and if it means getting her better faster then we are on board! Elsie tolerated this medication dose well this afternoon and didn't even wake up during the process.

Overall, things are looking as good as can be expected at this point.

Our Sick Baby

Sick children have consumed a lot of my time lately. I've been wanting to post for quite some time. Now we have lots to say.

Unfortunately, we have had a crazy, stressful, emotional week. Thanks to the prayers and support of family and friends we feel emotionally supported and have kept our sanity! We serve an amazing God, and we know that Elsie is in His hands as she regains strength and health in the days to come.

It all started last week when Ava became sick with a fever and viral respiratory illness. Being on maternity leave, I kept her home with us M-W. Unfortunately, Elsie's little body caught the virus and became sick on Sunday, the 21st. By Monday she had quite the cough but still no fever. I made a doctor's appointment for Monday and was told that she had a cold, but lungs were clear and given comfort advice and sent home. Tuesday things started to change as far as appetite and behavior but still no fever. I watched for dehydration signs and called a nurse for advice. By Wednesday morning, I was not comfortable with her actions, appetite, sleepiness and color. I got a morning appointment and upon arriving, her vitals were terrible. As I unloaded her from the car seat she appeared much more lethargic and was so weak that she could barely cry. Little did I know that the reason her coughing was less was because she had no energy to cough. She had a very pale complexion and her lips had begun to turn a purple-blue color. It was definitely the scariest thing I have ever experienced.

The nurse taking her vitals was sure that the machines were not working properly as her temp read 93.9 and her blood oxygen level was in the upper 40's to 50's (they like to see 95-100%). She switched out the machines and found that they were in fact correct. The events following were pretty much all a nightmare. They took her to a treatment room within the clinic to administer oxygen and called 911. The paramedics arrived very quickly, and she was transported to St. Elizabeth ER. It was a crazy experience to ride in an ambulance traveling with lights and sirens.

Elsie was so tired and weak from the virus she was fighting, so the attempt to improve her breathing was unsuccessful. The ER doctor made the decision to intubate her and put her on the ventilator. =( Since they needed to do this, the best place for Elsie was in Omaha at Children's Hospital. They sent a pediatric team which consisted of a nurse practitioner, nurse and driver from Children's Hospital to Lincoln for her transport via ambulance. I've been told Children's is the best hospital in the Midwest for her! They staff a medical doctor ("intensivist") on the PICU floor at all times. This is so comforting to know there is always a doctor a few steps away! Below is a picture after they loaded her into the infant life support unit.

Getting ready to head to Omaha...I'm a big girl so it was a tight space!!

Pediatric Intensive Care Unit (PICU)
Children's Hospital, Omaha, Nebraska

Look at all my tubes and equipment!
I look sooooo tiny in my big hospital crib - this is how I get to spend my 1-month birthday

Back in Lincoln, she tested positive for RSV, which is a virus that adversely affects infant children. For an older person, it would present as a bad cold. However, babies do not have the ability or immunity to fight it like we can.

Currently, she is at a stable status in the critical care unit. Her stats and levels are looking good. We were told that she will remain on the ventilator for 5-11 days. After she is taking her own breaths and completely weaned off the vent, she will move up to the 4th floor before being discharged. At this point we don't know how many days to expect to be here, but it will be at least a week before she leaves. They want her completely healthy and the virus gone before she leaves. I will keep updating this blog as I have the time and energy!

Again, thank you for your thoughts and prayers!!

UP AND RUNNING AGAIN

TESTING...TESTING...

A BIG THANKS TO MY FATHER-IN-LAW, MIKE, FOR FIXING MY COMPUTER!! INTERNET WORKS, RUNNING SMOOTHLY SO FAR AND HAS VIRUS PROTECTION...

Our Girls

Finally, a picture of our three girls together! I was hoping to get one with Elsie awake, but I'll take anything I can get. Picture time has gotten difficult!

Pediatrician Appointments

This morning I took the little girls to the pediatrician for their 2-week and 30-month well child exams. It worked out well that Elsie turned two weeks on the same day that I had scheduled Ava's 30 month appointment! I was a little nervous for the first outing with two little girls, not to mention that it is really cold and windy out today!! Ava was an absolute angel the whole time and even helped rock Elsie in her carseat while I completed some paperwork. Ava was fascinated with everything and asked a bunch of questions about the instruments and what was going on. She even asked the doctor to read a Curious George book to her. =) She cooperated very well and used her manners. There wasn't even any tears! I was kind of wondering where my toddler went and who replaced her!

The doctor reported that I had two perfect little girls and didn't have any concerns with either of them. Elsie is growing like a weed, and Ava amazes everyone with her lengthy, sophisticated sentences. She is also doing so well with potty training. She is now at the point of telling us when she needs to use the bathroom, whereas before we would just take her in every hour or so. She received her H1N1 booster nasal mist vaccine at today's visit.

Praise God for our healthy children!

Ava's growth stats:

• 34.8 pounds - 94th percentile for age
• 37 1/8" tall - 88th percentile for age
• BMI: 17.73

Elsie's growth stats:

• 9 lbs, 5 ozs - 82nd percentile for age; weighed 7 lbs 8 ozs upon leaving the hospital 12 days ago; averages 2 ounces weight gain per day - yikes!
• 21 inches long - 80th percentile for age; grew an inch in 2 weeks
• 14.25 inch head circumference

Starting to get chubby cheeks... Elsie's new outfit from Grammy R. fits perfect!

Bath Time!

Elsie's first home sink bath - January 28th!

She enjoys her warm baths for the most part. However, she hates being cold, so there is usually crying involved with every bathing... This morning, February 7th, as we were preparing a bath, Elsie's umbilical cord finally fell off (into the water). Ava was "helping" with the bath and says, "Her belly button fell off!!" Ha, ha - it was cute.