Slacker....thats me....

I think last time I was on this thing Brooklynn was to have heart surgery...so they attempted to do a cath (thru her groin) surgery which she would of been out the next day, but not much to our surprise we fell in the 2% of kids that are not able to have it done...the shape of her PDA was rare, so when they went to put in the coil it was slipping into her lungs. We were scheduled a week later for another surgery that went thru her back. She did awesome, we were in the hospital for 3 days (just as a precaution). She now has a 2" scar on her back and on on her chest from the tube they had to put in. After she was healed we saw a huge change in her...she ate more, her breathing was not rapid and her urine output was normal. We thought we were on the road to great weight gain!!!! No so much, we have come to realize with Brooklynn there is 3 steps forward 2 steps back.

Bring on the flu....Brooklynn ended up with the stomach flu 2x and a cold. In which caused her not to eat and she lost 6oz. It won her a trip to the ER for being dehydrated. As of now (a month later) she has a stuffy nose that is lingering but she has gained all her weight back that she lost plus some.

I am going to try to keep this thing updated as much as I can (remember). This is the only real big new from my last post.

Over the past 5 months....

She has had appt after appt...The 1st month she was home we were in the ER twice due to her retaining water which we were told might be from her lung disease. She had a follow up on

• Eyes: which are well they will follow her for a couple years to make sure they don't end up crossed!!


• Heart: she still has a PDA that now at 7 months (corrected) 4 months (adjusted) she will have fixed (May 4th) because it is causing her issues (breathing, feeding, sleeping, circulation in her hands and feet)


• NICU development: she is weak on her left side due to her grade 4 IVH on her right side of the brain, they will not diagnose her with CP yet but he said that once she turns a year her most likely will. He told me that he does not see her being wheel chair bound but there is a high chance she will have some sort of limp or need assistance. He also said that with her left hand she might over / under reach due to her Cerebellum bleed.


• PT/OT: they will be with her until she is at least 3 years old, they are here to help with her weak side and her tight muscles (due to her IVH). Some things that are noticeable now: she tuns her left hand in and bows out her arm and leaves her thumb in the middle of her hand, she leans her head to the right since her left is weak which will cause her right muscles to be tight, she does not move her left leg as much as she moves her right and she turns in her left ankle, she has rapid movement on her left leg at times. (most of these sound minor to some but they are not to her)


• Feeding Clinic: it has been an ongoing fight with them and us. They want to switch so much stuff with her feeding it was crazy. So in Jan I pulled her NG tube and made her feeding schedule on the times that she was awake. For about a month she was eating every 2hrs but she would sleep from 10pm to 530am, which was awesome we didn't have to wake her up. She recently had another follow up to do a swallowing test which she past for the most part they just want us to thicken her food a little since like every 3 swallows she took a drop went into her lungs. Other then that she was and is doing awesome. They will redo the test after her recovery from surgery

This is what I remember and what is the most important challenges she faces. This is also just a summary of the main things that is going on.

Our NICU roller coaster...

Brooklynn weighed 2lbs 3.75oz and was 13.75in long, she was FULL of hair!!!! I will try to keep this one short and list what went wrong. We were in the NICU for 75 days and she was intubated for 45 days. Everyday we went up for the 1st month there was always something new. She ened up getting late onset of group B strep, so one again they stopped feedings and started meds. Everything they said could happen with her did. The only thing that she did not get out of the stuff they told us was ROP (Retinopathy of Prematuriy). During her fight in the NICU she was on and off the the C-Pap and Ventilator. Here are some things that she has or had against her:

• Anemia
• Apnea
• RDS (Respiratory Distress Syndrome)


• Grade 4 IVH right side(Intraventriclur Hemorrhage)
• PVL (Periventricular Leucomalacia)
• Grade 2 IVH left side
• PDA (Patent Ductus Arteriosus) still open
• CLD (Chronic Lung Disease)
• Cerebellum Bleed

The things in red are the things that we are still dealing with and will be for a while. There was so much more while we were in the NICU, but I said I would keep it short...lol...She came home Nov 23rd weighing 5lbs 13oz. She came home with a feeding tube thru her nose and we were left to change it every 7days and put it back in when she decided to pull it out, but we are in for the long haul regardless what was thrown at us.......

This is the picture the night Brooklynn came home and the 1st time the sisters got to meet!!!! It was so exciting!!

** We could of not been more thankful for the people that helped us out in the 75days. Getting Baylee to school picking her up and taking care of her on the weekends for a couple hours...I don't know what was more heart breaking having you 27 week baby fighting for her life or having your 6 year old being upset because she cant meet her sister**