Z's weekend and oh yeah, those other two girls of ours :)

We are SO happy to be back at Northside Hospital. The entire nursing care experience at Scottish Rite was horrendous! We had one day nurse and one night nurse that were good and other were just terrible. It wasn't just a difference in "nursing style" either - it was clear incompetence in my opinion.

At Northside they have a certain style that we are used to and it is very family and patient oriented - the baby is a child, a real person - not just monitor numbers and tubes and wires. I realize that the NICU at Scottish is quite different because it is a surgical NICU so the babies come, they have surgery, they stabilize and then they leave; whereas at Northside babies stay for weeks and often months so the staff has an opportunity to really get to know the family. At Northside the nurses are much more in tune with what the baby needs, and they are in tune with the fact that each baby is different and has different medical and emotional needs. The nurses at Scottish just seem to have their checklist of items they have to do for the day or for the patient and they go through the list, check off the items and move along. At Northside there is great care and concern and support given to the parents. There is an overall understanding of the gravity and intensity involved in the experience of having a severly premature baby and they do anything to make your time there comfortable from offering a glass of water, to a listening ear, to a comfortable chair, to help on how to comfort your baby, etc. Even the small annoyances like when a monitor is beeping or a feeding pump alarm in sounding - those beeps and alarms are very obnoxious and more often than not the nurse or another nurse nearby will come by to address the alarm just to keep that added annoyance from frazzling your nerves even further.

Well......Richard and I did not feel remotely comfortable leaving Zoe alone even for an hour because the nurses just didn't seem to pay attention. The way their NICU is set up is that it is one large open room with bedspaces clustered together in fours - kind of like if you had a cubicle area in an office where each cube had two walls so you had privacy from your neighbor. They als had a few isolation rooms along the back wall - Z was in one of these, per the request of Northside since we are used to having more privacy. There were many times that we were in there with her and her monitors would be alarming and we could see the nurse sitting at the bedside just outside her room and she would just sit. And several people would be walking by and not one person would stop in to check the alarm. Z was held by either Richard or myself the entire time she was there except when she slept at night and I had a nurse look at me and say "are you going to hold her ALL day?" I also came in one morning after shift change and said I'd like to bathe her - her IV had come out so she had crusted blood between her toes and on her foot, she clearly had been crying because her hair was plastered to her head with sweat, and she had a small spit up - the nurse said "She got a bath last night." I looked at her in disbelief and said "I realize that but she is used to starting her morning with a bath, not to mention the blood, spit up and sticky quality of her skin." The nurse then said "Do you bath your other two girls twice a day?" I thought to myself "If I did is it any of your business?" I replied no I do not, but Z appears quite uncomfortable and I'd like to clean her up a bit, plus she loves to get a bath. I was so mad at this woman for questioning me like this on such a simple thing - a bath for my child who just had surgery.

I also had an instance where Z was getting a 10 minute long aerosol breathing treatment - which she hates! Her nasal canula was taken out of her nostrils and put up on the bridge of her nose - so first of all she's got high flow O2 blowing into her eyeballs and she's mad and she's kicking around. Her pulse ox was not picking up because she was moving around and the heart rate on her pulse ox monitor was not correlating with her respiration and heart monitor. Her nurse comes in and cranks her O2 up to 100% - without even looking down at her to see that the canula wasn't in her nose! Any educated nurse would know - look at the monitor but ALWAYS look at the baby.

We then had a scheduling issue which kept Z at the hospital for two extra days! Her ear molds could not be done on Friday due to the fact that they didn't want to aggitate her and cause her any respiratory distress so soon after her surgery. The audiologist was only on for two hours on Saturday and had a full schedule and they don't work on Sunday. Well, when the nurse called Monday morning they said she wasn't on the schedule and would have to be seen Tuesday! Luckily the NICU needed Z's bedspace for a critical admission so they kept calling audiology who then said that Medicaid hadn't approved the ear molds yet - well that was ridiculous because the audiologist came to Z on Friday with materials to make the ear molds but was turned away by the nurse. So if they didn't have approval on Monday they surely didn't have it on Friday! Well, Richard got to us late morning and he marched right across the street to speak with the supervisor and what do you know - they got to Z that evening at 6pm. So she stayed two extra days in this awful hospital with these terrible nurses.

But, at least that part is all behind us now and we won't have to go back to the NICU at Scottish. Z got transferred back to Northside Monday night and it was like she knew she was "home." She looked so angelic, laying in her crib, sucking on her paci, just smiling at everyone. Richard and I finally relaxed because eventhough her nurse that night had not taken care of her, we knew she was in good and safe hands.

Z has two sisters - A and L that haven't gotten much press time lately so let me fill you in on them. They are doing wonderfully - feeding is still and will probably be a challenge for some time but we got great news yesterday. L can now drink thin liquids (no thickeners or rice cereal needed) and A can now use 1 tsp per oz instead of 2 tsps per oz rice cereal in her bottles. We had to take them to Scottish Rite for a swallow study which was very strange. They strap them into these weird looking high chairs and I had to hold their forheads to keep them looking straight ahead I then fed them each 3 or 4 different thicknesses of formula as well as pureed pears while the radiologist watched them swallow to check for aspiration and penetration. So A still aspirates on thin liquids but handled 1 tsp per oz wonderfully and L still penetrated but not so much to be worrisome. We are also introducing baby foods with their feedings. So if they do not take their minimum requirement per feed of 90cc's then we mix the rest of the formula with a bit of applesauce and rice cereal to thicken it. L loves the applesauce flavor, she was quite happy to eat it. A on the other hand I think is just a slow eater - she savors every drop and every mouthful and therefore takes FOREVER to eat. But I do love the social interaction we have being face to face during eating, they have fun and make all sorts of cute noises and faces.

We've also started physical therapy for them to help keep on track developmentally. Their first real session was this morning - both girls started off interested and enjoying it until it got hard. But they both did very well and Susan our PT is just great with them. We'll get PT once a week and of course we will do the exercises with them for a few minutes each day as well.

So, that's us in a nutshell for now....Dr. Manar said it was "possibly in the realm of probablity that Z would come home in September" (talk about disclaimers huh?) we just have to see what she does from a respiratory standpoint. As of this afternoon she was back down to 4 liters on her high flow canula with hopes of weaning her back down to her baseline pre-op of regular canula 1 1/2 liters. I'll put more pics up soon I PROMISE!

1 comment:

Lauren said...

SO glad Z is back at Northside - yeah! Glad it is all over and she is settled back and happy in her "home away from home".

Love and hugs to you and all of your precious girls!

Lauren Sheffield

All time favorite video of Zoe!

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Bible verses that comfort me

"Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord."
~ 2 Corinthians 5:8

"Let the children come to me. Don't stop them! For the Kingdom of God belongs to those who are like these children....Then he took the children in his arms and placed his hands on their heads and blessed them"
~ Mark10:14 & 10:16

"...those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint"~ Isaiah40:31