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!

Z's surgery day

Z's day started off pretty calm, the ENT doc explained the bronchoscopy and I signed the consent. Then the GI doc did the same about the G-tube surgery. The only wrench in the plan was that she was scheduled for 11:45am but at 9:15am they decided to bump her up to 10am! Richard was still on his way to the hospital after spending a long sleepless night at home with A and L.

Her nurse and I undressed her and got her bundled with her paci in the transport crib and we wheeled her down the hall and onto the elevator to go down to the OR. She told me to wait outside the doors and someone would call me. I kissed Z's beautiful round cheeks and watched her glide down the hall as the double doors closed behind her. A nurse came out to ask if I had any questions, which I didn't other than if I could give her one more kiss. She let me in and I told her how much we loved her and that we'd be waiting for her when she woke up.

I had to hold back tears, out of fear - that was my baby they were handling - she is a part of my me and I did not like not knowing exactly what was happening to her. I walked back upstairs to the waiting room within about 20 or 30 minutes the ENT doc came in and began to talk to us about what he found by doing the bronchoscopy. He showed of pictures of what he saw - that she has signifcant scar tissue on the left vocal chord - the right side looks well developed but the left side has a large growth of tissue on it that shouldn't be there and it completely blocking the left side. He said that he would not chase after it with surgery that he would monitor it and that as she grows it should receed and open up. At the mid-point in her airway there is a cartilagenous ring which is more narrow than it ought to be and there is a large ulcer - neither are worrisome and need surgery at this point and again she should grow and it should not be an issue. All of the above mentioned items are due to the fact that she was intubated for an extended amount of time.

The worrisome part came next - at the bottom of her trachea he saw that she has a condition called tracheomalacia which is known as "flacidity of the trachea" basically everytime she breathes her trachea collapses instead of remaining open thereby restricting her airway. So, not only are her lungs bad but her airway is severely compromised. This explains why when she coughs she then cries and when she cries she gets really mad because she can't breathe. All of these things, coughing, crying, refluxing, just breathing - they all cause her airway to collapse so she is in a constant state of catching her breath. Imgaine how you feel after you walk up 10 flights of stairs or do anything aerobically active that causes you to breathe so hard your chest feels tight - this is what it is like our our baby girl to breathe on a daily basis.

He said that unfortunately there is no surgical procedure to correct this and like everything else she has to grow so that her trachea will mature and strengthen. But what this does mean is that for her first two years of life a simple cold, stuffy nose, bronchitis, pneumonia, any illness whatsoever that effects her respiratory system will most likely send her to the hospital. In the worst case she would have to be intubated during an illness and if it gets bad she could have to get a tracheostomy. So Richard and I are pretty much going to keep her and her sisters in a bubble. So if you haven't met our girls in person, don't be offended if they are 2 or 3 years old by the time you actually meet them. We may have to build a glassed in room so people can come and look at them without touching them or breathing on them :)

So then about 30 more minutes went by and her GI doc came in and said she did great, the G-tube was in and they'd be bringing her upstairs really soon. We were able to see her shortly thereafter and she was still sedated and still intubated. They wanted her to wake up to see what she would do on the vent - hoping that she would breathe on her own and they could extubate her. She started to make these twitchy movements with her arms and legs and then her eyes started to open and before long she was awake and mad as a hornet. She had one hand on her G-tube and the other on her ET tube - she wanted that ET tube out and she wanted it out NOW!!! She cried and cried - huge teardrops rolling one after the other down her cheeks - her face was beet red, and her tongue was quivering with her silent screams. This went on for what felt like an eternity and was at least 45 minutes. Her blood gas was horrible, she was on 90% O2 and she was NOT happy. The RT called the neonatologist and told them to pull the tube and see what she does - she was fighting the vent so hard it was not helping her in any way.

We stepped out and about 30 minutes later the nurse found us and asked us to come in to help calm her. When I came in after Richard she was perfectly content tucked into his arms, sucking away on her paci and falling asleep. We could finally breathe - that experience with the ventilator brought back a rush of flashbacks to our early days and months with all three of them in the NICU and it was not good. It made me want to run out of the hospital screaming like a mad woman - of course I didn't because my sweet little Z needed me - but I literally had to make myself stay at her bedside during that fit and not burst into tears myself. I hate that helpless feeling when my child is in serious distress it is the worst, loneliest feeling in the world.

She ended up having a great afternoon - she even woke up and smiled and talked to her Daddy - who she absolutely adores. They won't try to feed her until tomorrow and we're hoping she'll get back over to northside my Sunday. The audiologist at Scottish will try and do another set of ear mold impressions for her hearing aids and the ones done two weeks ago are already too small. We picked out her hearing aids - they'll be pink for the part that goes behind her ear and clear with purple sparkles for the part that goes inside her ears. My mom is already trying to figure out how to make fake hearing aids for A and L who surely will want pairs of their own when they get older :)

So...that's it for now - we're just trading night shifts at the hospital with Z while she's at Scottish and the Grandmas are holding down the household with A and L. Thanks so much for all your prayers and support - we know this is why our girls are here with us today and we know this is why little Z has come as far as she has as quickly as she has. Please feel free to post comments on the blog - I don't have a guestbook section but your comments, prayers and even discussion is very welcome.

I'll get more picture up soon so check back!!!

Z transfers to Scottish Rite

July 12th Z was transferred to Scottish - it did not start off very well at all. She did not like being taken from my arms which she had just settled into for a nap and then she did not appreciate being strapped down to the stretcher. She became quite irritated which made her clamp down thereby restricting her airway - she couldn't breathe which made her more mad. Richard and I tried to calm her and soothe her as we watched her rosy lips and skin turn a terrifying shade of deep purple. She broke out into a terrible sweat with beads collecting around her eyes and on her upper lip as she wailed and wailed, her hair quickly became plastered against her head all the while Richard and I desperately looking to her nurse and the transport team to DO something!!! She has had fits before, but never fits that made her this color for this long. The transport team checked her pulse ox which read between 23 and 43 (not good AT ALL), they changed the pulse ox, hooked it up to her wall monitor, hooked it up to the transport monitor, gave her a respiratory tretament (which she hates) and still her lips stayed the color of a ripe eggplant. Her beathe sound was markedly different, she usually sounds a little rapsy and wheezy - but this was a desperate need for air, she just was not pulling air in. Her nurse got on the phone to get an order from the doc for sedation, thinking that it was her fit that was causing her such distress. A member of the transport team unhooked her oxygen tank and hooked her up to her wall O2 and an instant rush of O2 startled her and suddenly she was pink and in a matter of moments she was calm. SHE NEEDED OXYGEN!!! Apparently her O2 tank had not been dialed correctly and she was only getting a tiny fraction of the support she needed. The whole ordeal lasted at least ten minutes and reminded me just how fragile she is.

Soon she was calm, sucking on her paci and holdng my hand as we started down the cooridor. She seemed to really like the ride on the stretcher and she got to feel the hot Atlanta air for the first time. I climbed into the back of the ambulance - they normally don't let parents ride back there but I think her previou purple shade had the transport team just a tad nervous. She did great on the ride over, just sucking away on her paci, squeezing my finger, and staring at the lights on the ceiling of the truck. We hit a bump as he pulled up to the hospital which caused her to cough, then reflux, then spit up. She recovered quickly and we wound our way through the hospital hallways until we came to the NICU. Northside has become our second home after nearly 7 months in residence so entering this new hospital was like stepping off into another country. The language is the same, but the accent is different - the docs are different, the nurses and RTs are different, the policies are different - the crib and the scale and monitors all look like outs, but they aren't the same.

The admitting nurse began asking the transport nurse questions about Z which I answered out of habit. I knew the answers and didn't have to look them up. I was so nervous about Z being there where they don't know her. at Northside even nurses who haven't taken care of her previously know all about her, her likes, her dislikes, her fits and how to help her. So...I had to fill in the gaps and be her voice. Not that she hadn't already told the transport team quite a lot about herself...Her primary nurse at Northside wrote out a page long synopsis all about little Z so they would know about her tendencies and preferences which thankfully the admitting nurse was receptive to. Z did much better with the transfer from stretcher to scale to crib. She only got a tad fussy but quieted and fell asleep.

About an hour later the anesthesiologist came in to review her chart and write orders for tomorrow. Z was fast asleep and the anesthesiologist grabbed the stethescope to take a listen and woke Z up when the cold metal touched her bare chest. Z, like her mother, does not like to be awakened unnecessarily and she got fighting mad. I asked if I could pick her up and I did. I tucked her into the crook of my arm, got her paci in her mouth and she settled back to sleep. As I sat and rocked her it finally dawned on me - I DO know this baby, MY child. All this time I've been worried that her nurses know more about her than I do and that I'll need an instruction manual from them when she comes home because I'm not there with her every single day like I used to be. I'm constantly being brought back to that day when she was in Pod E before moving to the Garden when she had a fit and a new nurse who had taken over mid-way through the shift asked me what she liked, what calmed her? At that time we couldn't even touch her so I couldn't answer - that hurt my heart so deeply that I did not know how to calm my child. But now I can! I won't need a Z manual - I am her mother and for the evry first time in months I finally felt like it. I knew more about her, I knew what to do, I knew the date of her PDA surgery, the date she was extubated then reintubated and then extubated again. I knew when her last infection was and what they treated it with, I knew how many blood transfusions she's had and that she hates her breathing treatments, dirty diapers, and getting hot. I knew all these details in my head because I AM her mother and it is my job to protect her and nurture her and love her. And...I DO know how to do this for her.

At Northside she is so closely attended to by her nurses (thank goodness) that I am often quick to turn her over to them when she has fit thinking that she will be soothed quicker by them and feeling insecure about my abilities to help her. But here at Scottish I was needed to calm her because they didn't know how and I did!

It is very difficult to feel like a parent when your child is in the NICU. You often have to ask permission to be with and to do things for your child which is not a natural way of parenting. I've said in the past that I often feel like the hospital lets me borrow her from time to time but that she isn't really mine. This whole experience really calls into question "how do you define a parent when you don't have the traditional 'formula' to follow?" I've struggled with this on many levels because I had a picture in my mind of how this was all going to go - how I would have these perfect, fat round, almost term babies who would just have to stay in the hospital for a couple weeks and then come home and take their bottles and cry and sleep and I would rock them and sing to them and they would look at me with adoration in their eyes and I would be sleep deprived but it would be wonderful. We all know this is not how things worked out for us but as Richard and I looked at our little warrior princess today, we wouldn't trade it for anything.