10 is the best number!!!!!!

Ben had his follow up appointment for his weight gain today. He is up 10 grams!!!
Okay, I know that is pretty much nothing BUT it wasn't a loss!!!!

Yeah for small victories!!!!

Pierre Robin Sequence

I realize that in the past few weeks I have mentioned numerous times that Ben has Pierre Robin (pronounced “Roban”) Sequence but I have never actually explained what it is and exactly what we are dealing with.




Simply put Pierre Robin is not a syndrome or a disease. However that is were it stops being simple as it can be part of another disease or syndrome.

It is usually referred to as Pierre Robin Sequence, although it is also know as "Pierre Robin Malformation Sequence", "Robin Sequence", "Robin Anomalad", and "Cleft Palate, Micrognathia and Glossoptosis."

It is a birth condition that involves the lower jaw being either small in size (micrognathia) or set back from the upper jaw (retrognathia). As a result, the tongue tends to be displaced back towards the throat, where it can fall back and obstruct the airway (glossoptosis). Most infants, but not all, will also have a cleft palate. Ben does indeed have the cleft palate.

The basic cause appears to be the failure of the lower jaw to develop normally before birth. During the early weeks in pregnancy, the lower jaw grows rapidly, allowing the tongue to descend from between the two halves of the palate. If, for some reason, the lower jaw does not grow properly, the tongue can prevent the palate from closing, resulting in a cleft palate. The small or displaced lower jaw also causes the tongue to be positioned at the back of the mouth, possibly causing breathing difficulty at birth. This “sequencing” of events is the reason why the condition has been classified as a deformation sequence. For some, these physical characteristics may result from another syndrome or chromosomal condition. Luckily it looks like Ben's case is isolated.

Robin Sequence/Complex is rather uncommon. Frequency estimates range from 1 in 20,000 to 50,000 births, based on how strictly the condition is defined.

It is important to understand that Robin Sequence/Complex can occur by itself (described as “isolated”) or as a feature of another syndrome. Parents who have had one child with isolated Robin Sequence probably have between a 1 and 5% chance of having another child with this condition.

When Robin Sequence/Complex is observed in patients with Stickler Syndrome, Velocardiofacial Syndrome, or Treacher Collins Syndrome, genetic/chromosomal factors will influence whether more affected children will be born. Robin Sequence/Complex also occurs in children with environmentally-induced (“teratogenic”) syndromes such as Fetal Alcohol Syndrome and Fetal Hydantoin Syndrome.This is why we had to have genetic testing done at the IWK, although at the moment it doesn't seem likely that there is even a possibility of an associated syndrome.

Robin Sequence/Complex, like most birth defects, varies in severity from child to child. Some children may have more problems than others. Problems in breathing and feeding in early infancy are the most common. Parents need to know how to position the infant in order to minimize problems (i.e., not placing the infant on his or her back). For severely affected children, positioning alone may not be sufficient, and the pediatrician may recommend specially-designed devices to protect the airway and facilitate feeding. Some children who have severe breathing problems may require a surgical procedure to make satisfactory breathing possible.
The pediatrician or ear, nose, and throat specialist will also carefully monitor the baby for ear disease. Virtually all children with cleft palate are prone to build-up of fluid behind the eardrum. The placement of ventilation tubes in the eardrums may be recommended to reduce fluid build-up. Since ear infections can cause temporary hearing loss that can affect speech and language development, the infant’s hearing should also be monitored from early infancy by an audiologist.

In many patients, the lower jaw (mandible) grows rapidly during the first years of life. In some children, the jaw may grow so quickly that by the time the child is approximately four to six years of age, the profile looks normal. Children who do not experience this “catch-up” growth may require surgery on their jaws.

The cleft palate, needs to be surgically closed. The timing of the surgery depends on the child’s individual growth and development, but it is generally done at 1 to 2 years of age. Because children with cleft palate are at higher risk for delayed or defective speech development, they should be monitored by a speech pathologist throughout early childhood.

I obviously haven't gone into any great depth, especially with some of the syndromes that can be seen with PRS. Ben has been tested and will continued to be followed to make sure that this is in fact isolated PRS.

No wonder I am a nervous wreck!

Victoria and Ben

Harrison Has A Bath...

and falls asleep!! Too Cute!!

Somedays I feel like giving up!!!

Today Ben went for a follow up appointment with Dr.Cogswell. Ben has been doing well (in my opinion). He is eating and sleeping well. We haven`t had any problems managing his airway or caring for him. We have all kinds of appointments set up for him and I thought things were going well.

When Ben was weighed...his weight is down...again. I don`t know what else to do! I am already staying awake most nights so I can wake and feed him. I may order a scale to have at the house so I can monitor his weight a bit better. Obviously I am not doing so well at it at the moment. The doctor mentioned supplementing the pumped breast milk with formula.

While we will supplement his feeds, I honestly just want to cry. It is bad enough I can`t breastfeed ( in the true sense of the term breastfeeding anyway) but now to know the milk he is getting from me isn`t good enough just adds insult to injury.

I have nothing against formula and formula feeding. It just isn`t for me. Breastfeeding isn`t for everyone and that`s fine. I think it should be a choice made that is right for parent(s) and baby. I, however, did not get a choice this time and I am having a hard time getting past it.

Ben will be seen again on Tuesday for a weight check. Hopefully his weight will be up a bit. Today has been a bad day....I am trying to keep optimistic but I think my optimistic meter is broken. All I see is this ending in poor Ben having the NG tube again and even worse ending up back in hospital.

*SIGH* Here is to tomorrow being a better day!

Happy New Year!!!!

Spider Baby!

Even Spider Baby needs a nap!

We're HOME!!!!!!!!

When we left the IWK yesterday we were told to call and check in before we headed back, just to let them know how things were going and how our night home went.

Unbelievably we were told we could stay home and that Ben would be officially discharged at the end of our 30 hour pass!

It hasn't really sunk in yet but we are home!!!! This has been a very long 10 days!

Merry Christmas from the Floyd's!!

MERRY CHRISTMAS!!!!!!!!

Day Dream?

I think I must be dreaming....we are getting a 30 hour pass to go home for Christmas!!!

Ashley packed...I got myself and Ben ready...we went to the NICU and had the nurse check Ben and the straps in his car bed.

Ashley took a load of things to the van...and then we left. I kept thinking someone was going to stop us. We went through both set of NICU locked doors and no one did. We made it to the elevator, then the lobby. We handed in the registration of live birth form and got in the van.

While we were driving away, I watched the hospital fade from view. No one stopped us. We were really going home...even if only for 30 hours. We were going to have Ben, Harrison and Victoria all in one place for the first time. No doctors, no nurses, no alarms, no monitors...I get to sleep in my own bed tonight and have a shower in my own bathroom with a towel that smells like fabric softener not "hospital". Suddenly the fact I didn't get all the shopping done I had wanted to didn't matter, the fact nothing is wrapped and under the tree doesn't matter, nor does it matter the BIG family dinner at my place isn't going to happen tonight. All that matters is we are all going to be home.

I keep expecting this to be a dream and wake up in the room that is always dark no matter what time of day. If this isn't a dream I am going to get what I really wanted for Christmas, my husband, my kids and myself all at HOME for Christmas.

Christmas Eve NICU Shoutout

This morning Ben was taken down to the NICU for his morning checks. I left him there for a little bit so Ashley and I could sort some things out. When I came back Ben's nurse, Shyla, had written on Ben's shoutout board that was above his cot/bill bed.

This was so cute and made me smile...especially the fact his weight was up 20g!!

Glow Bug

My little glow bug is sleeping....my husband is sleeping and I am tired....

I'm tired of a room with no windows...

I'm tired of sheets and towels that smell like a hospital and not home...

I'm tired of everyone treating us like patients and not people...

I'm tired of being tired...

Ben and Daddy

Presents

Today was the day of the present.

First the lovely social worker that has been helping to organise accommodation for us and putting us in touch with resources to help us cope came to see us. She took Ashley and I to a Christmas tree that had loads of toys underneath. We were able to pick something for Harrison and Victoria to give them for Christmas from the NICU staff. We were in shock. These people go above and beyond to help restore some normal to the lives of the people that come and go through the NICU doors. I can't say enough good about them.

Afterwards Ashley and I were paid a visit by the genetic counselor. I was a bit worried. The results weren't expected in that quickly and being really the last day of work before the Christmas holiday my mind went to a pretty dark place. However I was pleasantly surprised when she told us that Ben's results were essentially normal. One portion of the test won't be back for a few months but there is no reason to believe it would be abnormal at all. It truly looks like Ben's Pierre Robin Sequence is an isolated event. This truly was the best Christmas gift we could get!!!

We decided that we really needed to finish off the shopping for the other kids for Christmas and we left Ben for a very short time in the NICU nursery so we could get the rest of the presents. It truly is starting to feel a little bit like Christmas.

Every Village Has An Idiot!!!!

Last night we had a set back. Nothing major...HOWEVER...a certain nurse best steer clear tonight or my husband will be even less kind to her than I was.

Ashley and I have now been moved to a parent room inside the NICU and Ben is allowed to room in with us most of the time. Last evening we left Ben for a few hours to go get some food and clear our heads a bit. Once we returned I left Ben down there for a bit, visited with some family that had come to see us and got things ready for his next feed. When I returned to collect Ben I was informed he had a "chocking" episode and that he was very filled up and working very hard. Apparently things were bad enough that Ben's nurse put him back on the monitors. Since things looked fine I was allowed to take him back to our room. He sounded very nasal and just nor himself. I just watched for a few hours and there was no change. I tried to wake and feed him but he screamed every time I tried to give him a bottle. I was very concerned something was up and boy was there ever something else up.

Apparently Ben's nurse had gone to break and another nurse was "covering" and ended up attempting to feed him. Well this woman is clearly a runaway idiot from a near by village. She did not read the notes in the chart or if she did she certainly didn't understand them, she didn't ask questions nor did she contact me. She tried to cover her tracks by saying she called our room to discuss Ben with me but I pointed out that our cell number was on the front of the chart and that should have been called. This IDIOT decided to try and feed him in a completely wrong position AND was SQUEEZING his bottle when she doesn't need to!!! The combination resulted in poor little Ben being overwhelmed with milk and chocking to the point he vomited. Due to his cleft this was a very traumatic event and no doubt caused him considerable pain not to mention how hare he was having to work afterwords to breathe! I was livid when I found out. She was nasty when I suggested that perhaps she did not use the bottle correctly and/or position Ben correctly. She assured me that her "36 years in the NICU" made her far more knowledgeable about how to care for a Pierre Robin baby. She also said there was no way he could be feeding as well as I was recording for the chart and was only doing so to go home faster!!!! I wasn't very nice to her from that point on!!

For the rest of the night I left Ben in the NICU but made sure they called for every feed and diaper change. I wasn't letting anyone near him without being there myself to make sure things went well. Poor little guy was scared to take the next few feeds but by 7 this morning he started taking his bottle again. Due to all this he lost some weight which will no doubt delay getting a date for discharge.

This morning at rounds our doctor wasn't impressed by the actions and basically made it known that "mom knows best" that I had no problems feeding him and that he was better off rooming in than in the nursery. So Ben is here with us and happy....well as happy as one cane be in a NICU.

My husband wants me to show him which nurse caused this issue. I have no problem with him dealing with her. For her sake she better hope she isn't on again until after we go home because given what happened...it won't be pretty.

Normal??--An Update

It has been a busy week to say the least!!! With everything that is going on in the search for answers in regards to Ben's Pierre Robin, we are also trying to make things "normal" at home...especially where we are coming up to Christmas.

First off Ben has been doing well with his feeds, the NG tube was discontinued....restarted and now discontinued again. His weight is fluctuating but he isn't gaining or losing allot. The doctors hope over the next few days as the photo therapy helps with the jaundice that he will become less sleepy and be more interested in feeds. He is a Floyd boy so I am pretty sure he will sleep like his no matter what! I called mom and Harrison is asleep and as I am typing this both Ben and Daddy are enjoying a nice nap, I think that sleep is just what all my boys do and they do it well! Ben continues to do well with his special bottle and the OT woman is a dream! She arrived this morning with a second bottle for Ben so we have a spare to go home with (when ever that may be).

Consults had been arranged for this week and poor little Ben has gone through more tests than you could shake a stick at. This morning Ashley and I had a family meeting with the multidisciplinary team and started getting some answers. We were also able to ask some questions.

Ben has had a consult with Dr. Wilson from plastics. Dr. Wilson was at the meeting and explained that he will be following Ben in terms of the growth of his mandible and also be doing his cleft palate surgery by ( hopefully) late 2012. At the present time Ben is doing remarkably well at managing his airway on his own. He feels that Ben will be able to manage until his jaw grows and he develops the strength to manage his airway in a more normal fashion.

OT and the lactation consultant along with our paediatric specialist went over Ben's high nutritional needs and discussed how he is feeding and how he hopes that will continue to go well.

Cardiology was consulted and Ben had an echo of his heart this week. It was an essentially normal exam!! The gross anatomy looked good and even the more in depth stuff was fine. He will be seen in follow up, although I am not sure when, to make sure things continue on a normal path.

Opthalmology was consulted and saw Ben yesterday. This was by far the hardest thing for me to deal with. Since I have so many issues with my eyes and major eye problems run in my family I have been a nervous wreck waiting on this consult. I know what I have had to go through with my eye and my mom has had many issues/surgeries as well. I know my eye specialist is looking into autoimmune things that may be behind the issues. One of the common syndromes that can be linked to Pierre Robin is Sticklers Syndrome. Sticklers is an autoimmune problem. Anyway the paediatric opthalmolgy team arrived yesterday morning and dilated little Ben's eyes and then did their thing. It was so hard as a mother to stand there and watch them pull and poke and prod at his little eye. Lucky everything looks normal!! None of the red flags for Sticklers are present at this stage. This doesn't mean that signs or symptoms couldn't arise later on but for now things look very good!

Ben had his normal newborn hearing test. He passed with flying colours! Another good outcome.

Ben had an abdominal ultrasound yesterday but the results are not yet back.

Respiratory was also contacted since Ben's airway is so unstable. The main reason for this consult was to see if he would qualify to be immunized against RSV. Due to Ashley, Victoria and I all having asthma and poor little Harrison showing signs of asthma the respiratory consultant was able to wright a letter to authorize the free immunization. He received his first does yesterday afternoon and will receive another on January 15th.

Ashley and I were both asked if we had CPR...which obviously we have. We did need to do a "refresher" this morning with another occupational therapist and RT. This was to ensure with the discharge planner that we as Ben's parents are able to handle whatever happens.

Overall things are going well and Ben is stable enough to go to NICU 2, which is more of a step down unit. Ashley and I have managed to move to a parent room right in the NICU to be with Ben all the time. Even though his bilirubin is still up he is able to room in with us some in a special photo therapy bili bed. All this is to give us more of a sense of normal life....but honestly it has me questioning what NORMAL really is.

Everything I have known about looking after a little one is thrown out the window. Yes Ben is a normal little boy and needs all the same thing any other little boy or girl would need. However the way in which these things are accomplished are vastly different.

Feeding--Ben can't breastfeed in the normal sense of the word. He is able to latch and suck a bit but due to the palate issues I either have to express milk into his mouth or use a special external feeder to help him. Most times it is more about the skin to skin contact than true "feeding". However depending on when his surgery is and how long it takes to heal there is a hope he will get some true feeding in down the road. For now he is getting pumped milk in the special bottle. The fantastic thing about the Haberman feeder is that it is the same motion as breast feeding but instead of Ben creating the suction the bottle does it for him. Both Ashley and I are becoming more familiar with it and it feels more normal.

Sleeping--For years we have been told to put our babies BACK to bed. Ben has to be in the prone position to maintain his airway so he has to sleep that way as well. This means tummy sleeping. Trust me he can sleep with the best of them!!! This is normal for him...but not what most would consider normal I guess?

This brings us to the next issue. The drive home. Due to the fact that Ben has to be kept tummy down or on his side a regular car seat isn't going to work for him. We have been lucky enough that the NICU has a car seat educator who worked with Occupational therapy to get us a car bed. Yup that's right a car BED, and yes it looks like the things our parents had for us and brought us home in during the 60s and 70s!!! In fact I am sure the one sitting in my parents basement looks EXACTLY like the one that was given to us to use for Ben! So he can go in the car but it has to be done differently and I think most would agree not in a normal way at all.

Even diaper changes and baths have to be done slightly modified. A swaddled and side laying for a bath. As for a diaper change very brief periods on his back and frequently being moved to his side to minimize his struggle to breath.

Life isn't normal like it was before but it is becoming a new kind of normal. While the medical stuff is still scary and overwhelming, being his parents and looking after him in this modified way has become normal. I am no longer terrified to pick him up or feed him. I feel just as comfortable with him as I do with the other two....we just have a different sense of normal with him. Ben can do ANYTHING...it just might not be the way you think of it as being normal.

The hospital LIVES!!

It's Monday and the parade of people has once again resumed. Occupational Therapy had given me a special needs feeder or Haberman feeder to try and I LOVE it for Ben. He can control the milk flow himself and not choke or get milk coming through his cleft palate. The bottles are expensive (38ish dollars EACH +tax) but so worth it. The OT lady gave us one and it is a must we get more before going home.

The lactation consultant was here to help me develop a plan for pumping and storing milk as well as trialing skin to skin and latching prior to Ben's feeds and pumping.

Consults have been arranged for several departments this week so hopefully we will start getting some answers.

Ben did so well feeding we are looking at loosing the NG tube!!! Such good news! His IV was discontinued last night as well!!

Victoria and Harrison were down today as well and it was nice to have some normal family time. I miss them and can't wait until we can all be home!

Sunglasses

We are still in the NICU and on top of everything else today Ben's bilirubin was elevated so the doctors started photo therapy. Hence the very stylish eye wear!!

Until now I never really noticed exactly how much a hospital slows down over the weekend. Time seems to have all but stopped. I just want to start getting some answers!

Lets hope Monday brings great things.

NG Tube

One of the major issues Ben is facing is with feeding. Due to his airway and cleft palate it is hard for him to feed. We tried a special squeeze feeder but he wasn't that interested. To make sure he is getting what he needs he has been given an NG to to supplement his feeds.

Ronald MacDonald

Today I have been discharged. Benjamin is still in the NICU. Thankfully Ronald MacDonald house have rooms outside the NICU and we were lucky enough to get one. Being able to stay so close to him is an absolute sanity saver!

As I am sure anyone who has had an experience with Ronald MacDonald house or Ronald MacDonald Family Rooms will tell you it brings a little bit of normal back to a very abnormal situation.

Please buy a happy meal and/or make a donation to Ronald MacDonald children's charity. Honestly we are very thankful as it is allowing us to stay close to Ben when he needs us and gives Victoria and Harrison a place they can be with us and have it feel somewhat normal.

Benjamin Alvin Floyd~ Our Pierre Robin Sequence Story

Benjamin Alvin Floyd arrived at 0037 Thursday December 15 2011. He was perfect, 8 pounds 12 ounces, term and a head of hair to die for! But something wasn't quite right. You could tell within a few minutes he was struggling to breathe. He was turning blue and looked so small. That's when everything changed.

Ben was taken to the warmer and the nurses and Ashley started trying to help him however they could. Paediatrics, and Respiratory came in. They managed to get his airway opened and whisked him to the nursery to be looked after. All I could do was watch. It was the worst feeling. Xray saw him too and then Ben was airlifted to the IWK hospital for sick children in Halifax and Ashley and I were transferred by ground.

The next 24 hours were almost incomprehensible. We were able to see Ben for a few minutes in the NICU once the nurses and doctors had him settled. We were told to get some rest but that seemed impossible. We met with doctors from what seemed liked everywhere. Plastics, Genetics, Pediatrics and ENTs. We were told that Ben had some thing called Pierre Robin Sequence and that the prognosis was dependent on if it was an isolated event or part of a bigger problem or syndrome.

For the moment we are in NICU 1 which is a pretty overwhelming place. We are trying to take things one day at a time but knowing that some of the testing will take weeks or months to come back seems unreal.

I will try to update as best I can but life in the NICU is overwhelming...I am posting some pictures of Ben and I in the NICU a few hours after we arrived.

Nutcracker 2011 Cadance Mother Ginger