Thursday, May 19, 2011

Long Day of Dr. Appointments

Yesterday was a VERY long day of Dr. appointments. Jillian was the reason for two of the three appointments we had to attend yesterday. Britian was along for the ride and only had to subject herself to the last of the three appointments. First off for the day was a sweat test for Little Ms. Peanut. Her newborn screen tests came back with an elevated marker which can indicated Cystic Fibrosis. Britian's was higher than normal too but not nearly as high as Jillian's. So as a result Jillian had to go through the sweat test which is the standard first step for testing for CF. She is barely over the 5lb requirement for this exam so our hopes were not high that she would sweat enough to get good results. Our suspicions were confirmed when NO sweat absorbed on to the collection discs.

Now let's step back a minute so I can explain some personal history so that the next turn of events makes more sense. Before having children I was a biological researcher. I have worked on numerous projects but the biggest and longest of which was for the company that currently has a CF drug in late stage clinical trials. I was a biologist on the team that developed that drug so I know a little something about Cystic Fibrosis. I know my daughter doesn't have this disease.

Keeping all that in mind we still had to jump through the first hoop because of the newborn screening. The screening sent up a red flag in the state's system so we had to atleast attempt to close this issue. When no sweat appeared on the collection discs I told the nurses that I would not be subjecting her to anymore testing for this disease. The marker that the girls scored high for (immuno reactive trypsin, IRT) can also be elevated because of stressful delivery. Anyone that reads my girls' birth history will know that it is definitely classified as a stressful on. No one knows why IRT is elevated after a stressful birth only that the correlation has been shown. Everyone on Jillian's care team is in agreeance with me that no further tests need to be done to rule out CF.

The second appointment for the day was to test Jillian's hearing. While in the NICU Jillian did not pass hearing tests in both of her ears. Her right ear failed once and passed once while her left ear failed twice. The exam yesterday was to test both ears again to get true results. After the exam she passed in her right ear and failed (as I expected) in her left ear. We have a follow-up appointment in August for a more thorough exam on her left ear. It could be fluid in her ear or nerve issues causing her hearing loss. Ear tubes, hearing aide, or other devices may be necessary to remedy her hearing so that normal language and brain development can occur.

The final and longest appointment of the day was "high risk". High risk appointments are for all preemies that spent a considerable amount of time in the NICU. On the docket for this appointment was normal growth and development checks such as weight, length, head growth, muscle tone, reflexes, and oxygen tolerances. No changes were made to the girls' oxygen requirements, both clearly still need the amount of O2 that they are on. Reflexes and muscle tone look great for their age. Jillian is 5lbs 6oz and below the growth curves for her adjusted age. I know that she will most likely always be little, I am not worried a bit about her being off the curves. She is growing and developing and that is what is most important. It takes all shapes and sizes to make growth curves, some big and some little. Jillian is just in the little population, not every baby is going to be "average". Britian is 6lbs 5oz and is average all around for her adjust age. She is HUGE by all comparisons to what she started at. She is the same size as any normal term baby with huge kissable chubby cheeks.

All in all it was a good day and the girls did great being away from home for so long. Note to self though, I will not be wearing high heeled boots to anymore appointments, my feet were killing me at the end of the day. :)

Thank you for your continued prayers.

Sunday, May 15, 2011

No News is Good News

Brit and Jillian in their going home outfits
Can you tell the girls and I are home now? Gee whiz, I haven't had any time to sit down for more than a minute or two and post here. So sorry. But rest assured that no news means good news. The girls and I arrived home safely over 2 weeks ago and life has been on the move ever since.

Two days after being discharged we moved into a newer and larger house. The girls and I came home to the new house and lived in one room temporarily until the rest of our furniture and belongings arrived from the other house. I am so thankful that the girls learned to sleep through every level of noise because we certainly did not come home to a quiet house. Because of their lung issues we had the carpet removed from the main living area and hardwood floors laid in its place. The floor installation was in full force when we arrived home, not a quiet process at all. But God's hand was upon us yet again and the floor was able to be completed despite an unprecedented short timeline for completion.

My husband came down with the flu on the day of moving but our friends rallied around and got us moved in one trip. What a blessing each and every one of them was to us that day. We are slowly settling in to our new house. Taking care of the girls, managing the house, and caring for my older 3 leaves me just a little bit of time each day at the most to unpack, sort, etc. But I know it will come together eventually.

The girls are doing wonderfully at home. Both have broken into new pound categories. As of this past week Britian is now 6lbs 4oz and Jillian is 5lbs 4.5 oz. They are growing and getting stronger everyday. I marvel at them everyday, they are truly little miracles. They might be twins, conceived from the same egg but their personalities couldn't be more different. It has been so much fun watching their little personalities emerge from their shell. Britian is the stronger, louder, and more vocal one. While Jillian is calmer, self-soothing, and laid back. Her voice is starting to emerge though. My oldest asked how I can tell who is crying without seeing them,  I just can. Their cries are very distinct to me.

We are not supplementing their milk here at home. In the NICU they received 27kcal breastmilk with human milk fortifier added. Here at home I was supposed to add Neosure formula to half of their bottles everyday. That lasted maybe 2 days, they were both in so much pain that I stopped as soon as I verified the cause. They continue to gain on just my milk so we are going to stick with that and I couldn't be happier. I love knowing that they are getting my milk naturally as God intended.

I will continue to update on the girls' progress as time allows. Thank you everyone for your prayers and words of support. Please keep us on your  prayer lists. We desperately need these girls to stay healthy and free of viruses.