Overdue update

Wow its been a while since Ive updated - nothing MAJOR has gone on but we've had a few ups and downs. Emily got sick at the end of November so we were unable to go out of town - most likely just a virus though - no hospital stay! She now has a few teeth and can eat french fries pretty good. HAHA Physical therapy is going well - she's crawling around and they are working on getting her to stand and walk. She's already all over the place with her little scoot. She's just growing up so fast - she hits the 11 month mark this week.

The girls are both ready for Christmas - they love all the decorations and Im sure will be excited to see all the packages under the tree. The pictures above were taken for Christmas.

A Few pictures

Here are some recent pics of the girls. School pictures, Halloween picture and Emily's 9 mth pictures.

Swallow Study

Emily had another swallow test last Friday. She did a little bit better and can now take what they call nectar consistency. We are able to put some thickening gel into her juice so she can drink that with a sippy cup.
She also go her first tooh this weekend. Finally - now if she'll just get a few more she can start eating real food.
There have been no major issues to deal with (knock on wood) so hopefully we'll head into the fall with few illnesses.

ECI Evaluation

ECI (Early Childhood Intervention) came out to evaluate Emily last night and she definately qualifies for physical therapy. Developmentally she's about 3 months behind but socially and emotionally she's right on target and maybe a little ahead.
She will get physical therapy twice a month and they expect her to improve quickly. Our first goals are to belly crawl, sit up and stand.

Recent Pic

Just wanted to share a recent picture of Emily in her new bumbo chair and her new favorite activity - playing with her toes.

Visit at Clinic

Emily had her visit at the clinic this past Monday. Overall they were happy with her growth over the last few months. They did express concern about her getting sick so often though. She'll be starting monthly RSV shots in Oct and will get a flu shot as well. No changes to her meds this time either. No more clinic visits until November now.

Update

Well we've managed to stay out of the hospital, except for a visit to the ER. We have to be very careful to not let her dehydrate so we don't take any chances.

She had a visit with the Renal doc yesterday and all is Ok. They saw no damage to the heart from the high blood pressure and her kidney's are growing good. Now we dont go back there for 2 months!

All in all the last few weeks have been good - she's almost 15 lbs and growing good.

Hospital Stay

Emily had her first stay inpatient at Texas Childrens Hospital. Sunday we took her to the ER because she had lost a few pounds and was looking dehydrated all within about 12 hours. They admitted her into the hospital Sunday evening. Her levels are finally Ok and she was able to come home last night. They believe the problem is with her kidneys. When she gets sick they are not getting rid of all that they need to be, specifically the sodium which causes her to dehydrate so quickly. She did have another renal U/S and echocardiogram so hopefully we'll learn something from that in a week or so. Their only advice is to get her into the doc quickly if she begins to throw up or has any diarrhea.

Visit with Renal doctor

Today was our first visit with the Renal doctor. She's been officially diagnosed with Hypertension and will have to have her BP monitored daily as well as stay on the BP medicine. We have to go back in 1 month and also have a renal ultrasound and echocardiogram done in the near future. Hopefully her renal reflux will show signs of improvement.

ER visit

We had our first trip to the ER at Texas Childrens's Hospital last Wed night. Emily got sick at daycare and we were afraid of another dehydration episode. After spending all night in the ER (you can imagine Abigail was not a happy camper having to stay too) it turns out she was OK - not dehyrdated. They did give her fluids after many tries at getting the IV in. Abigail was very concerned for her sister. At one point she made the nurse feel bad because she said "That nurse put a hole in my sister!" She's very protective of Emily. Better to spend a night in the ER for peace of mind that end up with another lengthy hospital stay.

Update on Doc visits

Last week was a busy one. We met with Pulmonary on Monday and everything is going well. Her cultures have come back negative twice so we no longer have to take the inhaled antibiotic and we don't go back until Sept. Wednesday we had our first appointment with the new GI doc - pretty uneventful - nothing is changing - we see her again in Oct. We also saw the surgeon today - no more long tube hanging out of Emily - she got her g-button. Its so much easier for her to be on her tummy now. She's teething right now so she's been chewing lots and been a little cranky. I'll be so happy when they finally come in.

6 months old today

I can't believe Emily is a 1/2 yr old today. It just doesnt seem possible. Here are some new pics.

Picture Time

The first professional picture we've had made of Emily. I thought this was just the sweetest picture - Abby loves her baby sister.

Barium Swallow Study

It didn't go as well as we had hoped. She still has to have all liquid thru her g-tube.

Visit with Surgeon

Well she does have a hernia, but they are not going to do anything about it at this time. As long as the area is soft and she is having no problems then we do not need to worry about it. They would rather her grow and get bigger before repairing it. She's set to get her g-tube button on July 12.

CF Clinic

Yesterday was our first visit to the CF Clinic. Her new pulmonologist is wonderful! We were there several hours, but we were constantly meeting with someone so the time went so fast. We met with a social worker, dietician, nurse and the doc - he even met with us for about an hour. I just felt so at ease with the whole place in general. We are glad we made the decision to switch.

More doctor visits!

Next week will be a busy week for us. We have our first appointment at the CF Clinic on Monday - we'll see her pulmonologist, nurse, dietician and social worker. Earlier this week we noticed a large spot sticking out of her abdomen on one of her incision sites and I believe it is a hernia. We have an appointment on Wed with the surgeons to take a look at that. If it is a hernia, we'll be having surgery #4, but hopefully her stay won't be very long at all. Hopefully her surgeon can see her at Texas Children's, if not, we'll have a new surgeon to! We finally get to have another swallow study done next Friday. Maybe she will do better at swallowing liquids and not be dependant on the feeding tube.

Emily is doing very well at home. She's finally reached 12 lbs again. It's taken a while, but I think we have finally gotten into our routine. We have a busy schedule with all of her treatments and medications. I guess I'm just learning to live on very little sleep - there just simply isnt time for that. Hopefully this weekend we'll be able to get her first professional pictures taken - I can't believe she's 5 months old and we've never been able to get any.

Here's a new picture of Abigail and Emily - this was taken last Saturday.

June 10, 2006

We made it a whole week at daycare with no problems. Emily is doing great at home. This morning she had a visit with her pediatrician for some shots and she also got her ears pierced. I guess she's been thru so much in her little life that a little ear piercing was nothing - she hardly fussed at all.

We were able to make an appointment for June 19 to see a brand pulmonologist. He just happens to be the director of the CF Clinic. We are quite eager to get started with some fresh faces and see what good things they can do with Emily.

June 3, 2006

Third time's a charm?? Emily came home (again) today. They have switched her formula yet again. This time it makes the other stuff appear cheap at $25 a can. This stuff is Neocate (aka liquid gold). You can only get it thru a pharmacy and its on average $40 a can - which lasts only 1 1/2 to 2 days. At least she's doing better on this stuff. She also came home with one nasty diaper rash. Ive never in my life seen one this bad - its so raw and bleeding.

May 24, 2006

Today was Emily's first day at daycare. I got a call this afternoon from the hospital that when they tested the blood that was taken from her large IV in her leg, it came back positive for an infection and we needed to get her back to the hospital for treatment. We'd only been home a day and now we have to go back! I was so angry and we'd already decided we didn't want to go back to this hospital (much thanks to one of the docs). We contacted the other children's hospital to see if we could bring her there but it was decided it was in her best interest to go back to the original hospital this one last time. So back we went - same hospital - different floor. We had now been on all of the floors in the children's hospital.

Her regular docs were back so we conveyed out great displeasure in the other doctor and refused to see him anymore. We also learned that the docs we do like - are leaving. So this was the nail in the coffin of this hospital for us - on to greener pastures.

May 23, 2006

Today we met with the liver specialist. Emily has TPN Cholestatis from being on TPN (Intravenous provision of nutrients when enteral intake is inadequate or impossible) for so long in the NICU. She is very jaundiced and her liver and spleen are enlarged. She is on medication for this and hopefully it will clear up in the next several months. This was however, the WORST doctors appointment I have ever had. We waited almost 3 hours with a crying hungry infant before we saw the doc. We won't be going back there.

May 22, 2006

We finally get to leave the hospital - again. Its so hard to get IVs in her so they had to put in a large IV in her thigh. At least she didn't get poked all over for blood every day. We are now on MORE medications and back on the original mix of formula. During this stay, it was discovered she had renal reflux. She will be on antibiotics for a few years and hopefully the problem will correct itself. She also completed another swallow study. When drinking thin liquids, she aspirates so she needs to have those thru the g-tube. This time they used a pudding consistency and she did great! She is now able to eat babyfood with no problems. OH I did fail to mention that the docs let her get dehydrated AGAIN while in the hospital - therefore extended our stay so long.

May 12, 2006

Emily has not been doing well with the formula change. This morning she just didnt look herself so we decided to take her into the ER. She was very dehydrated from throwing up so much formula. After a few hours, our pulmonary docs decided to admit her into the hospital. I was not ready to be back there after being home such a short time. We were supposed to be on vacation and enjoying out last week home with Emily before she started daycare.

May 10, 2006

Had the appointment with surgery. Everything looks ok with her incisions and we're schedule to get her g-button in July!

May 8, 2006

Met with Pulmonary today. They are switching her formula to a higher calorie since she's lost a little weight since discharge.

May 7, 2006

Emily has been home almost 2 weeks so its time to start seeing the doctors for follow-up appointments. This week we see Pulmonary, Surgery and GI. Hopefully we'll get the g-button on soon to replace the long feeding tube.

April 28, 2006

Abigail got to see Emily for the first time since January. She was a little unsure at first but I'm sure it will take a while to warm up to the idea of having Emily at home. She is a little concerned about her tube but she seems OK with it.

April 26, 2006

109 days in the NICU - today Emily came home. We spent the last 2 nights in a care by parent room to learn how to use the feeding pump and nebulizer. We had her in the room with us all day waiting for discharge but that didn't happen until almost 8:00 PM. It was a bittersweet moment leaving - we were thrilled to go but we'll miss some of the nurses. Her primary nurse, Carolyn, was so wonderful to us all so I know we'll be keeping in touch.

April 10, 2006

Finally - after many weeks of antibiotics and waiting on the surgeons, Emily had her 3rd surgery today. They had to remove another small bit of her intestines and reconnect her. At the suggestion of the surgeon, they also put in a g-tube for feeding. Emily has not done well with swalling formula, so she's been fed by a tube. There are hopes she will outgrow this but as a child with CF she could possibly need the g-tube for supplemental feedings at night. The surgeon said it was better to do it now and hope she doesn't need it than to have to go back into surgery just to do that. I certainly didn't want to have to see the surgeons a 4th time. Surgery only took about 2 hours - far quicker than we expected. She was given an epidural for the surgery instead of being sedated with morphine. She was off all oxygen and was wide awake when we got to see her. This was MUCH better than seeing her after her 2nd surgery.

This picture was taken of her the day before surgery.

February 26, 2006

Pulmonology called us today and the brochoscopy showed that Emily did test positive for PA in her lungs. She would now begin her treatment of antibiotics. She would get 2 weeks of tobramyacin via IV followed by 4 weeks of inhaled tobramyacin.

February 23, 2006

Its my 2nd day back at work and the hospital called. On the 21st Emily was moved into an isolation room because she had tested postive Pseudomonas Aeruginosa (PA) in her urine. Since she tested positive for PA they wanted to do a bronchoscopy to see if she had developed it in her lungs. Her pulmonologist did the bronchoscopy - they had to give her a bit of moprphine because she did not want to go to sleep with the milder meds. She's a fiesty little girl. The isolation pod is often called the "dirty" pod but we actually liked Emily having her own room - maybe they were keeping her germs from others, but it also meant everyone else's germs were kept away from her.

February 22, 2006

Today was my first day back at work. I spent the last 6 weeks spending all day with Emily in the NICU. She is very spoiled - I held her 85% of the day - I did have to take a few breaks and lunch! It is very hard to concentrate on work when my mind is with my baby. I never imagined she'd be in the hospital this long.

January 23, 2006

In all of the craziness of the 2nd surgery, I had forgotten Emily had been tested to see what caused the bowel obstruction to begin with. When the test results came in, I called Jonathan to hurry over from work so we could hear the news together. In an instant our lives were forever changed. Emily was diagnosed with Cystic Fibrosis. We were completely shocked. There is no evidence on either sides of our family of CF - yet we are both carriers.

January 20, 2006

4:30 am - the phone rings - its the hospital. Emily's abdomen had enlarged again. She had to be taken to surgery immediately to find out what was wrong. A leak had developed where the 2 ends of the intestine were connected during her first surgery. They had to take those ends apart and rather than reconnect and risk a leak happening again, they decided to give her an ostomy and let her grow and heal before reconnecting her. This is not the news that we wanted. This meant her stay in the NICU would be extended and recovery would take much longer than we anticipated. She was sedated pretty heavily on morphine. She was SO swollen with fluid that she weighed in at about 10 lbs. It was so tough seeing your child looking so helpless when there is nothing you can do but hold her tiny hand and look at her.

January 9, 2006

This must have been one of the worst days a parent can have. I was discharged from the hospital and had to go home without my baby. My parents where here to help take care of Abigail so we stayed at the hospital all day and late into the night just to be near Emily's side. She was sedated from surgery and mostly just sleeping.

January 8, 2006

Emily had surgery today. Her sister, Abigail, got to see her for a few minutes before surgery. The NICU does not allow siblings under 3 in at all but the nurse broke the rules so she could see her sister before surgery. Surgery took a few hours and she came thru it very well. According to her surgeon, it was best case scenerio - he was able to remove the obstructed part of the small intestine and reconnect the two ends. Hopefully recovery would go well and we'd be home soon.

January 7, 2006

During an ultrasound it was discovered that Emily had meconium ileus ( an obstruction in the intestines). It was decided that we'd induce labor 2 weeks early so that she could go ahead and have surgery. She was a bit smaller than we all expected but her abdomen was quite enlarged due to the blockage. She was immediately moved into the NICU after delivery to await surgery the following day.

January 7, 2006 - Happy Birthday!

Today Emily Claire Fosburgh was born. She was 7 lbs 6 oz and 19 3/4 inches long.